History

Sunday, May 6, 2012 0:04 AM CDT

Hey buddy...

I wanted to talk to you tonight. I miss your voice. When I want to see your smile...I look at your photos. When I want to hear your voice, I have my cancer Build-A-Bear that we made that one day. Remember how mad you were when I made you and Riley record, "we love you mommy!" And remember when it never sounded sincere to me, so I made you two record it like four times before I gave up. I laughed cause I wanted it to be so sweet and loving, yet you and Riley were more ticked off with each recording. I remember after you died, I was in my room crying and I just wanted to hear your voice and there on top of the shelf in my closet was the bear. I slept with it for awhile after that.

I know I have all of those crazy home videos too, yet I am too afraid to watch those just yet. I will in my own time. I often think about how I watch movies, and when a loved one dies in the movie, their loved ones pull out the home movies and watch them right away. I laugh to myself...that isn't me! I do know some parents who have done that, but not me...can't do it!

Riley and I look at photo albums from time to time. I do admit that they make me smile when I do.

I miss you...I miss every single thing! Thankfully the terrible flashbacks have subsided for the most part. Now I just live each day without you to the best of my ability. Some are good days, some not so good.

ML wrote some great words on your guestbook, cause I do seem to be struggling with the whole concept of having a purpose. I don't believe it's to wake up, take a shower, get Riley to school, work, come home, eat, go to bed, and start over. And that's what I feel like I am doing right now. I feel like I am just squeaking by most days. Maybe ML is right and I will find that purpose later in life, I just have to be patient. I used to believe my purpose was to get you better...to fix you....

Riley and I have gotten closer lately, so that makes my heart happy. Yup, she's still kinda mean to me sometimes but I guess that's what kids are. The other day she almost made me cry cause she kept biting my head off about how my yogurt "stinks" while I was trying to drive her to school and get some food in my tummy. I thought, "wow she is mean sometimes!" Then I wondered what she would do if I actually did cry some time.

Ty is drifting apart, maybe becoming his own man so to speak. I get sad cause I miss him. I remember when you died and I told him, "I don't know what to say or do to make this easier for you. I struggle at 40 years old, I can even imagine being 16. Yet one thing I know is that we will get through this together!" And today, I feel like "together" never happened..."together" is everyone in our family kind of pretending it didn't happen and we all mvoe on. Silence. Nobody truly talks about the pain, the hurt, the saddness...how each of us are truly doing.

I joke that Riley never seems to want to talk about any of it, and she will be the one who grows up and get's into therapy because of her unresolved issues, ones that I could help her fix. Well, and Ty is full of some bad choices...I can't even decide if they are lazy teenager issues or issues because he lost his brother. Probably somewhere in the middle I am sure.

I feel kind of helpless actually...and I feel sad quite a bit, yet as history shows, I put on my happy face and chug along. I certainly don't want anyone to feel sorry for me. And from all of the loving guestbook entries, I appreciate that so many view me as a good mom, and in such a positive light. I think we did touch a lot of lives in your long journey. I think we did impact people and probably did change a few lives, maybe even many! I know we raised awareness like crazy...I mean heck, I have CCKMA on my license plates for goodness sakes.

Well I could type for hours on end to you...I miss you. I want your wise beyond your years words to ring in my ears. I want to cuddle up and watch Deadliest Catch with you. I want to spoon and fall asleep rubbing your back. I want to touch your warm soft hands.

Someday we will be together. In the meantime, I will continue to focus on life here without you. Riley needs me still...and in a weird way, I know Ty does too! I'm sure life will fall into place at some point, or so I hope. I will continue to dig deep for my famous positive attitude. And I will continue to talk to you like you are still by my side...sometimes your answer and sometimes, I know you are busy checking in on everyone else that misses you like crazy. I love hearing the Kyle stories from them!

Now I am famously rambling and need to get some sleep! I miss you buddy...more than words could ever say!

xoxo,
Mommy

Thursday, March 22, 2012 10:30 pm

Wow, I sure stink at updating...! I am not even sure many of you still visit us. I guess time is supposed to heal all wounds, and I'd like to hope many have not forgotten. We continue to trudge through life without Kyle. It's so surreal still, Kyle died, Kyle passed away, Kyle is gone...maybe the more I type it, my brain may process it. I think I once heard that in therapy...or maybe it was my victim advocate training. Regardless, it still sucks!

Tyler is finishing up his first semester at our local community college. I know he hopes to become an x-ray technician, and possibly someday at a Children's Hospital. He would be fantastic working with the children, that's as long as he doesn't have to see blood. He never was very good at that with his brother. He lives with my parents and continues to date Megan, I can't keep track of how long it's been however I think it's in the two year range!

Riley and I are living in a condo in Broomfield still. She is a Middle Schooler, in the 6th grade, and doing fantastic. She's a very smart girl...I am super proud of her and how she has continued to excel in life. I guess resilient comes to mind when I think of her.

Me? Well, I started managing at Eddie Bauer. I really do enjoy it and the people...well most of the time anyway. I just celebrated my one year there actually. I guess it helps me pass my time, keep my mind off life a bit, and well it does manage to pay the bills. I still am torn about what to do with my life...I had a plan, God had other plans, at least that's how I view it.

One would think that after nearly three years, that I'd be on the road to a positive, successful, productive future yet for some reason I feel as though I continue to wander around this world uncertain of everything. I don't know which way to turn most of the time, so I continue to put one foot in front of the other, breathe in and out, and take each day as it comes. I wouldn't I come across as depressed, and I'm sure those that meet me would never guess my life experiences are what they are. I wear my smile and continue to laugh, however those that truly know me can see pass the crap I try to show. Those that do know me can see the hurt and pain deep within my eyes.

Yesterday, I stopped off to buy flowers for Kyle's headstone...as usual, I wandered for 45 minutes picking certain flowers and putting them back because they weren't right. Trying to choose which color he would like, "maybe he wants blue" "would he be mad if there were pink and purple in them" and then "I cannot believe I am standing here picking out flowers for my little boy's headstone!" Finally I settle on some blue and yellow ones, and add a few Easter decorations within the arrangement and leave.

I head to the cemetary and remind myself that I am not the only mom in this world to lose their child. Kyle is buried around many children...one little girl murdered, one little boy a victim of a hit and run, one beautiful girl died in a car accident, one baby was stillborn, and so on and so on. Not that any of it makes me feel the least bit better about my loss, yet it often puts a reality check into my pity party...this is life, it's not fair, people die, children die, we all eventually die. It's the cycle of life and there is not a single thing anyone of us can do no matter how much we wish we could change that.

I recently saw on good old Facebook something like this, "do not dwell on the times we wish we could have had, yet celebrate the ones we did have!" So I continue to remind myself to celebrate the 12 years I was blessed with Kyle, I remember the good times with him (and there were so many). I miss his smile, his touch, his cuddles, his laugh, his witty comments, his love...yet I am grateful for those 12 wonderful years that I got to be his mommy! God picked me...and I thank Him each and every single day.

Dang it, I wasn't going to cry...and now I am going to put on my happy face and kiss Riley goodnight!

I know this update is scattered, and honestly I almost forgot how to sign in to this site. I will do a better job, just wanted to update because...well just because!

Much hugs and love....
Denise

Tuesday, November 1, 2011

Happy Halloween a day late...I sure missed the heck out of you, as always! My favorite Halloween memory was when we lived in the Broadlands and we decorated the porch like crazy! We had that fog machine you wanted, remember that? We hadn't realized the cord was so short and that we had to sit close to the darn thing and push a button to make fog. I remember practicing with it so we could time the fog for the little kids. I remember you didn't really ever want to trick or treat because you always wanted to stay by my side because I always had the job of handing out the candy. That Halloween was awesome, until we both ended up with lung congestion for weeks because of that fog machine. We inhaled that stuff all night long!!! I wish I had a way of organizing my photos and pulling them up. I'd post them to share with everyone! Those were the days!

I don't remember much about your very last Halloween, you were diagnosed with your second relapse just weeks before it. I remember handing out candy to the kids, you must have been hanging around, playing video games with Ty.

I'd give anything in this world to have you back! I am not doing any better, it's not really easier, and days are simply not the same. Every day, memories of you flood my head! On the exterior, wow am I doing good! On the inside, I am very broken and tattered, sad and heartbroken. I keep the tears deep within me as often it seems I am alone! ALone in my grief, hurt and pain! I try to make things better, I guess I just don't know how. I often believe this is going to be a very long life without you...it's not the same without you and it never will be. Your unconditional love is irreplaceable! I try...God knows, I try!

I miss you buddy...as the holidays approach and your would be 15th birthday approaches, I know things will not be easy. But you know, I'll put on that happy face, that brave smile, and continue to tredge along this thing we call "life"!

I did start a facebook page for you, your frineds miss you! Their words bring small tears to the corners of my eyes and a smile to my face, it warms me to know that you are not forgotten!

Continue to guide Ty...and watch over Riley and I. We need that!

xoxoxoxoxoxoxoxo....

Mommy

Monday, August 22, 2011

Hi Buddy...

Well let's see here, life still goes on! I can't believe it's been just over two years now that you have left this crazy world. I still think of you every minute of every hour of every day. I am still a bit shocked you are truly gone and it's been forever since I held your soft, warm body. The mere thought of it brings me to tears. I talk about you every single day to complete strangers though. I see their eyes fill with tears as I share YOU with them. I met an older couple at Eddie Bauer today. They were rushing through to their cell phone store. They had a photo they needed to retrieve from their phone. Much to my surprise they wanted me to see their photo as they were passing back through the store. It was a photo of their 14 year old granddaughter laying peacefully in her casket, she died from a car accident. They said even at 80 years old, they do not understand life either and why things happen that do. As they sadly walked hand and hand to the exit I though to myself, "this really is going to be a long life!"

On a happier note, Tyler passed his GED a few weeks ago...I know you aren't surprised in the least that he aced it. Now we are working on his license in the next few weeks and then school. I think he is truly interested in being an x-ray technician. I told him he'd be fantastic at it, and could probably work at Children's Hospital. I recall the times you had scans, xrays, MRI's, ultrasounds, etc...it was the young, cool guys that always made it a little easier for you...I could see Ty doing that as well. I know his heart aches for you so much. I can see his hurt and sadness still...I feel it too!

Riley started Middle School and I could only think of the day we started you out at Westlake Middle School. I remember sitting on the floor outside of your locker and organizing everything for you. I remember teaching you how to use a lock on your locker, and walking from class to class with you to ensure you wouldn't get lost later. I remember when the 6th graders were supposed to go to Outdoor Ed and you chose not to go. I thought you were scared to go because it was a few night away, little did I know you didn't want to go because your mom "needed you" to be home. I remember your teacher, Jamie, telling me that story after you passed away. I can't imagine what you were thinking those last few weeks of your life. I bet you were so terribly worried about me and if I was going to survive without you. I don't think you worried about yourself at all. Every thought was probably about me, Tyler and Riley. Oh how I wish things had turned out so differently.

Life is an interesting thing...I don't understand it, I don't get it...yet, I feel like there is so much more for me in the future. I don't know what it is, but I can feel it. I think I can go on to do great things...I just haven't figure it out yet. It's like it's on the tip of my tongue. I will get it...someday.

I miss you buddy...more that there are stars in the sky!

Mom

Saturday, July 9, 2011 11:28 AM CDT

Hi buddy...

The 4th of July came and went and we finally watched some fireworks. 2 years ago, you were in PICU, just placed on that nasty vent. We all said, "if Kyle can't watch the fireworks, well then neither will we!" We closed all of the blinds and gathered around you with so much love, hugs, and kisses. Last year, I know you thought it was too soon for me to see them without you and it poured rain, the event here was cancelled. I was relieved! This year, we gathered around Nan's pool and indeed my heart ached for you. I kept thinking, "I can't believe I am sitting here watching this and my little man is buried a few thousand feet away from me!"

The 3rd was equally hard as I recalled that being the last time I was able to talk to you (2 years ago). I recall our last conversation ever, lots of "I love you's", "I am so proud of you" and even the dreaded, "if it EVER get's too hard for you, it's OK with me to let go!" Phew...I never thought I would have to deliver those words to you. Tears pour down my cheeks as I saw your little head shake, "ok"! We never mentioned death or dying, not once did we hold that discussion, I think we agreed it wasn't an option. Sometimes now, I wish we had talked about it. The only saving grace I have now is that I know you didn't leave me and we will see eachother again. We will know where to meet up when my journey here on Earth is over too!

Until that day, Ty, Riley and I are here doing the best we can. Riley has her 11th birthday approaching. We make every attempt not to associate it as "the day before Kyle died!" She's making her birthday list and emailing it out. I don't like what's on it...boring stuff, yet I am torn between buying here what she wants and what I want her to have. Again, she wants to celebrate over at Nan's house with a pool party. Amanda's mom is coming, I'm sure you and Amanda will make an appearance too.

Ty just passed his driving permit test. I was was nervous for him as he refused to even look at the booklet. And just like Ty, he only missed two questions on the test. I am hoping he will get his license next month. He has been doing quite a bit better. As we approach two years without you, the reality has really set in that you are gone and there is absolutely nothing we can do about it. No matter how hard I wish, beg, pray and plead...the reality is you are no longer gracing this Earth with your love, caring, giggles, hugs, and kisses. I still believe you give the worlds best hugs and I sure miss them!

I am still working at Eddie Bauer here in town. It's just part time but I like the escape and talking with people. I mention your name often and share your life with them. I'm not looking for kudo's or words of encouragement, I just feel like your life is worth sharing over and over and over again.

I miss you...I smiled yesterday when Ty drove us to the grocery store and I saw pinwheels there. I asked Ty what color to get you and he just shrugged his shoulders. I almost grabbed a green one when you told me "red"! Those little "whispers" make me smile...I hope they never stop. I think we were way too connected for that to happen. You will always be a HUGE part of me. I often say that it's going to be a LONG life without you here but I have chosen to live it none the less. I will live it for you, in honor of you, and only do what I know makes you proud of me. There is no other way to be, you deserve that much (and more)!

Keep the "whispers" coming buddy...I need them!

I love you and miss the heck out of you, as do all of us!

Your forever mommy
xoxoxo

Monday, May 2, 2011

Hi Little Buddy...

First of all, I am sure you knew before me that Osama Bin Laden is dead! I thought of you right away because we would always find a way to talk about him. Weird I know, but that's what I remember. I think you actually found his name rather catchy for being such a BAD BAD man! LOL!

I miss you terribly! I think I mention your name daily sometimes many times a day. I started working part time at Eddie Bauer and find that I have to share our story and my "little boy that died from cancer!" I do good for the most part, however my eyes swell with tears when I tell everyone that you weren't just my little boy, but you were my total and complete best friend! Life is no fun without you Kyle. Every day is a challenge and a struggle. I often feel as though we have been given such a crappy go at life and that survivng the worse loss of my life would somehow entitle me to good things. However, that's just not the case. My road is not meant to be easy or fun. I have since determined that for some reason my life is filled with challenges and hardship. Which often surprises me because I typically remain so positive and faithful. I often find myself saying, "ahhh things will work out, no big deal!" AND...they don't!

So after many months of interviewing for Victim Advocate jobs within police departments and courts...I have placed second nearly every single time. Leading me to work 15 to 20 hours a week at Eddie Bauer. I can say that while the pay is not what I was hoping to achieve, I do like the job tremendously. I adore people and being out in the world once again. The money will certainly not pay the bills once my spousal support ceases in a few months.

To make matters a little more challenging. Due to my upcoming financial change, my landlord has opted to sell the home once my lease is up on May 31st. Hmmm...no idea where we are going at this point in time. Today, I rented a storage unit to hold all our posessions (yours too buddy) as I attempt to figure out what to do. One option is to move to Missouri as my parents have a small, furnished home that we could stay in. The good news is it's close to my brothers and I could be surrounded by family. Bad news, no Eddie Bauer there so I'd have to search for employment there.

Ty is doing alright. He is hoping to take his GED in May sometime. He still fights with "father" often and has little to no relationship with him. He has his wonderful girlfriend still, she just left from an Easter visit as a matter of fact. She's good for him! I am going to start counseling for him this week or next week for sure. I know his heart is so terribly broken still. We take turns allowing one another to grieve. When I am broken down, he stands up and vice versa. I now believe that time does not heal all wounds and we will forever be lost without you!

Riley is doing well. I often say she will probably have some issues later in life as she never really expressed her grief and continues to fail doing so. I know she misses you and oddly enough, I see you in her more and more every single day! She's starting middle school in August and it hurts to know that's what you were starting to do when your cancer returned. I stare at each of your school photos that grace my entry way and realize soon enough, Riley will surpass your last remaining school photo (6th grade)! You took a fantastic picture and I remember that day so vividly. You took an amazing last school picture and I often look at it and think, "we had no idea this would be your last one!"

I will say it again, I have no idea how to live without you! It's no fun and I don't like it! I try to put on my brave face (aka my strong face, you know the one all too well) yet inside my spirit and my soul is broken. Not many talk about you or reminisce with me...however, you will forever live on through me and through your brother and sister. Not a day goes by that the hurt doesn't tear at my heart.

I will continue to put on my "happy" face and I will continue to live...I know through all of my struggles and difficult times, that you are always wrapping your little angel wings around me and cheering me on with that great big, handsome smile!

I miss you...so very much!

Mommy

Tuesday, March 22, 2011

Hi Buddy...

Not too much going on here...same ol' same ol'! I'm still searching and interviewing for jobs. I can't believe what a pain in the butt that is. I just had another interview on Monday and have two jobs in the air with two different police departments. I am hoping something pops up in the next few weeks so I can stop worrying myself about the finances, "where will we live", will I have to get rid of the pets, etc.

I talked to Nan the other day, she was totally upset that she put those beautiful lights by your headstone and someone had the nerve to steal them. They were pretty nice and yes, I too am appalled that someone would actually take TWO lights from a handsome devils gravesite. I know Michelle was saying someone took the one light at Amanda's a few weeks back. My neighbor works on the committee for the cemetery and you bet I will have to say something to him...I guess my end thought is karma!

Ty and Pop are heading back to Missouri this weekend for a week. He seems pretty excited to get away again. Riley is on Spring Break and yet she has been sick most of it. That stinkin' nasty croup cough!

I have a loaf of banana bread in the oven, sure wish you were here to have a bit. Funny enough, I feel you baby boy...every single day, you are with me and it brings a smile to my face when I pause to think about it. I wish I could see your face, hug your warm body, and kiss your face off though!

Wish I had more to say...other than I miss you, as always! It's not easier, just different. I've come to accept that you are not coming home. Someday, I will get through all of your things. I know the tears will flow yet I look forward to recalling all of the memories that are tied to each piece of clothing, each letter you wrote or picture you drew. I am thankful for your presence Kyle. You are forever with me....it's just in a different way than I had planned!

Big kisses....xoxoxo!

Mommy

Tuesday, February 22, 2011

Hi Kyle...

I sure miss the heck out of you little boy...not a day goes by that my thoughts aren't with you! I often close my eyes to see you, feel you, and breathe you in. I miss every ounce of your little body. At night, I lay in bed and immediately flash back to laying with you in that twin sized hospital bed. The railing jabbing me in the back but I don't care as long as I can "spoon" you! I recall the comfort of feeling your warm body so close to mine, feeling your back rise and fall as you breathe in and out so deeply and rested! The comfort of rubbing your soft back until you fell asleep, and the times I would fall asleep first! I close my eyes and I can smell you and hear your soft voice wishing me a "good night, sleep tight, see ya in the morning!"

Church was hard Sunday...the first time I cried in church since returning. The subject: if there is a God, why do bad things happen. I can't figure it all out, as tears streamed down my cheeks, I can only think that God let you rest finally. He saw after 10 years that you had simply had enough, you needed to rest...free from pain.

Then when I was tossing and turning last night, it came to me that God also had the ability to cure you and take that all away once and for all while keeping you here with me so now I'm confused again...yes, I gather that wasn't the plan! I know all too well that you are no longer here with me on this Earth...and for some reason God needed you more than I did (although I'm unclear how that is possible as I continue to do my best to live here without you!)!

The anniversary of your transplant came and went, no comments, no celebrations, no remembering...while the transplant took and we celebrated you being 100 percent donor cells, the cure took you away where you were needed!

My heart hurts, and I am certain it always will! Some days are easier than others but as a whole, this plain ol' sucks! I crave your voice, your hugs, and your laughter! I close my eyes and search for those memories of jokes, witty comments, and even "mean" comments under your breath, intended for only me to hear!

I miss you little buddy...I never dreamed I'd be walking this road and yet here I am, proud to say I'm still functioning without my best friend, my little buddy, my little boy...proof it can be done!

Your mommy forever!
xoxo

Tuesday, January 18, 2011 6:48 PM CST

Kyle...

I sure miss you...LOTS! The holidays were almost tolerable this year. Tyler's girlfriend was here so it sure helped to have the extra company. Of course, things will NEVER be the same without you. I cannot believe you are gone, truly gone...I think I just let each day pass, I survive it and it's over until the next one. I don't stop to think about it, let it really fill my mind as it's just too hard to comprehend. I don't ever think I took for granted your life while you were here at all. I really cherised every moment we had together. I often try to think back to what I would change about you and I, honestly...there isn't a single thing. Sometimes I find myself thinking, "what if I did this differently, would Kyle still be here" and honestly, the answer is always "no"! You had cancer...you were diagnosed with leukemia just after your third birthday. You were ill and it kept invading your body no matter what we did. We tried everything and in my heart, I really believe had you survived the transplant and the complications from it, it would never have been the end of your battles. I feel in my heart that no matter what, it was just never ending...that surely doesn't ease my heartache or pain.

I remember telling you shortly after you died that I would take this hurt, this heartache, this sadness over you having to endure one more second of physical pain. The thought of all that you endured makes me sick and angry. I surely could not have asked any more of you than I did...I couldn't continue to be selfish enough to expect you to keep on fighting, even though my heart really wanted you too. Your strength and desire to live brings me to my knees.

I still cry quite a bit. Not so much in public but those times I am alone in thought, usually curled up in bed with your teddy bear. I still find myself trying to smell you...and those visions of the past still haunt my head. I want the good thoughts but typically it's the hospital thoughts. This I know for certain, my life will never be the same without you!

I started reading Elizabeth Edwards book the other night. I find myself attracted to books that either distract my brain from my life, or books that are about the loss of a child and how they dealt with it, or continue to deal with it. It's comforting to have those moments where I realize I'm not so crazy after all!

Things are quiet around here. Tyler seems to be doing better. He just dropped out of school though and is going to get his GED this Spring. I'm still working on the drivers license and job with him though, funny enough he is just not interested in either of those things. He misses you, I know that every single day you are on his mind!

Riley is still doing good in school. I can't believe she is going to be a middle schooler in the fall. Boy Kyle, we thought she was moody when she was little...I think of you everytime she snaps at me one moment and loves me the next. Remember when we'd fight over who had to wake her up, we were never sure what Riley we would get...the grumpy one that bit our heads off, or the sweet little girl ready for her day!?

I started the job search again. I have been working on my resume as I have an interview on Thursday for a job in Golden. I'm starting to panic about finding a job and having my own income. I talked to my boss at the police department today and she told me that over 200 people applied for the same job I have the interview with. I guess I just keep telling myself the right job will come along when it's time. In the mean time, I will keep on trying and not give up hope!

I don't know where my life is heading most days, typically I am just glad I can wake up and be a mom to Tyler and Riley. I do the best that I can yet I miss you so very much! I look to you each and every day...so thank you for the signs of your presence. Thank you for reminding me to breathe...

I love you...

Mom

Wednesday, December 1, 2010

Oh little Kyle...Happy, happy birthday to you!

I cannot believe you would be 14 today! You'd be an 8th grader with lots of girls hunting you down...you might even be a bit mouthy (which is hard to imagine)! We'd be talking about high school and which one you would want to go to.

I remember when you were born 14 years ago. I remember the first thing I noticed on you was your really long fingers. I was certain you'd be a wide receiver when you got older. You were a perfect 8 lbs and 2 ounces. I remember not wanting to know if you were a boy or a girl, and I was certain you were a girl up until I was ready to deliver you and then I said, "I bet it's a boy." I recall you being nameless until discharge day because we couldn't agree on a name for you, and as Nan was rocking you in the chair wooden chair in the corner she said, "he looks like a Kyle!" That was one of my top three choices and I was so pleased with the name!

I had 12 and a half wonderful years with you. Oh my did you teach me so many lessons in life. I find your letters, journals, cards, and dedications to me. One of my favorites is in 5th grade when you wrote a book for school, and the dedications was, "to my mom, who helped me get through my cancer. I love you!" You taught me to love with my whole heart. You taught me to forgive and move on. You taught me compassion and to live each day to the fullest. You showed me determination and strength. You made me laugh and smile each and every day. You tried to teach me World of Warcraft with no such luck after hours of staring at your laptop. You taught me that the little things do not matter and to choose my battles wisely. You taught me faith and hope. You made me into the best mom that I could possibly imagine being.

I wish this wasn't in the plan...me wishing you a happy birthday through a letter. I wish I was buying you presents (OK I still have bought you a few and have no idea on Earth how the heck I am going to get them to you, but I bought them anyway)! I wish I was hugging you close as you melt into my body like you had on so many occasions. I wish I was smelling your fresh and clean hair and seeing your smile light up your face (and mine)! I wish we were deciding where we wanted to eat tonight and what kind of cake you wanted to celebrate with.

Instead, I am going to dinner with Riley, Nan, Jen, Susie and Michelle. We will probably head to one of your favorite places to eat tonight. I am bringing balloons to your grave site today in honor of your birthday instead of watching your tear open your gifts that were wrapped with care by your little sister! I don't understand, I'll never understand...as the tears pour down my cheeks, I can honestly say that none of this is getting easier...not in the least! My heart is broken and I don't think even the best glue in the world could hold it back together! I miss you...but then again, you already know that!

Happy Birthday Kyle...you are terribly missed!

Mommy

Tuesday, November 9, 2010 6:26 PM CST

Hi Kyle...

Mommy is making one of your favorite meals for dinner tonight...chicken and rice (nope not hot wings)! The weather just turned cold and the snow is starting to fall.

Ty and I spent hours cleaning up the yard yesterday. I think you'd like this place that we rented. It has huge trees and the leaves were all over the place. I filled 15 lawn bags on JUST the backyard alone. Ty did help me though, he did the leaf blowing and then helped me bag towards the end. I was surprised he took the time to help me, I think you might have nudged him to do so...I know you would have for sure!

I started cleaning out more boxes and arranging things as well. Guess what I found? Your bracelet from the hospital, the day you were born. It was so teeny tiny...I had a feeling when I saw it in the bottom of the box that it was going to be yours! I remember the day you were born, you had the longest fingers (all ten of them) and I was certain you would grow up to be a wide receiver. I remember stroking them as I sat in the hospital that December day.

Speaking of which, your birthday is coming up. I can't believe you would be 14 years old. Wow! I sometimes run into your friends and am very guilty of doing the typical, "wow I wonder what my handsome little boy would look like at 14!" Honestly, it breaks my heart but I bet you already knew that.

I sure miss you. I miss your witty sense of twisted humor, your smile and huge dimples, your evil little giggle, your soft skin with all of those moles on your back. I miss your long blonde hair, the way your little pants would "swish" when you walked. I miss buying you clothes and new Nike tennis shoes. I miss you every single time a new video game comes out and I know I would normally be buying it for you. I miss watching movies that I think you would have loved or eating at your favorite restaurants without you. I miss your smell. I found your black and red Nike sweatshirt and you guessed it, I immediately held it up to my nose in hopes of catching your scent! No such luck, just as I figured...but I washed it and hung it up! Life without you is hard. I do my best to keep on keepin' on but wow...it's pretty darn difficult. I think of you all the time baby boy...gosh how I wish you could be here! I don't cry nearly as much, maybe it's because I still feel the need to keep my strong face...but I sure can be found crying when I'm all alone!

I am a strong girl...you made me into who I am today! I thank you for being my son for those amazing 12 and 1/2 years! Someone once asked, "would you still have had him knowing the outcome you were given?" And without one pause or hesitation, "absolutely! Not a doubt in mind!" I was blessed to have you and you are right, I am still here because I have more lessons to learn in life! And although I cannot see you or touch you...I can still feel you, every single day!!!

I love you Kyle...it seems very cruel that we had to be separated from this life here on Earth but I know someday we will be together forever in eternity!!

With so many tears...

Mommy

Wednesday, October 20, 2010 10:03 AM CDT

Oh how I miss my little boy...so very much!

Fall seems to be difficult and I have to say, entering year two without Kyle is harder than the first. I only say that because I truly believe year one was a big fat blur, a state of fog and disbelief...total and complete utter shock! Once the shock starts to dissipate and you pass that one year mark, year two begins and you truly begin to realize what has happened. Kyle died, he's gone and he's not coming back AND there isn't a darn thing I can do about it! That's the reality I face now. So maybe a little anger is settling in at this point. I miss him, I want to see him, I want to touch him, I want to kiss him! I want to hear his giggle and see his adorable face...and there isn't a darn thing I can do about that either! Grrrr....his picture and his memory have to pacify me!

Nobody talks about Kyle. I have to bring him up...and it's usually in the form of sitting on the couch, glancing at his photo across the room and saying, "gosh I miss Kyle!" The kids then realize what has occurred and simply state, "me too!"

Fall stinks...Kyle loved Halloween. He didn't dress up or trick or treat, he wanted to sit with me and pass out candy to all of the kids. He always wanted to be as close as he could be to me...he felt as though he was my protector, he always wanted to take care of me and be with me. After Halloween was Thanksgiving, a time to give "thanks" and then his birthday on December 1st. He'd be 14 this year...oh my goodness! This is the time of year that he'd start telling me what he wanted for his birthday and Christmas. Usually, his list was small as he was more concerned about how much money I'd have to spend than what expensive item he might want. What an amazing little boy he was!

This year Ted is taking the kids and I to California for a week. We are going to enjoy Disneyland for a weekend and celebrate Thanksgiving there. We have no big plans however I think we are going to cook our own Thanksgiving meal and celebrate as our own small family this year. Ted is my source of strength and love...he keeps me going, he has been my rock. I have told him that I think Kyle knew it was OK to go because he knew that Ted would take care of me...and he has. I often tell Ted that he is who Kyle would have grown up to be...they are very similar in so many ways but most importantly their love for me is insurmountable and incredible. They both want to protect me and care for me...and they both have done an incredible job! Kyle is smiling down, this I know for certain! That's doesn't ease the pain but it does allow a small smile to creep across my face!

On another good note, our "family" has been attending church EVERY Sunday for the past two months. Jack and TJ LOVE it and actually make sure every Saturday night that we plan on going in the morning. Even if they have sleep overs they want to be sure we get them before we go! It's great and we love it! God knew I was lost and had patience with me, He knew I'd return to my faith...and now I have everyone on board with me. Amazing enough, I realized that each Sunday I place myself in a spot where there is always an empty seat next to me...then I figured out that the empty seat was no coincidence, it was Kyle's place next to me!

I miss him...oh boy, I miss him! My heart and my soul...Kyle Ray Lindgren, here for a little while...with God forever!

Sunday, September 19, 2010 11:28 PM CDT

Isn't Kyle's headstone amazing? I just love it!!! Crazy enough, it arrived on the same exact day that sweet Amanda was being buried. Her family chose to bury Amanda next to Kyle, I was touched and felt complete honor to know that they wanted to bury their precious child next to me and next to Kyle (I bought the plot next to Kyle and then Amanda was laid to rest next to me)!

His headstone arrived at 11 am that day, it was so crazy to walk up to Kyle's grave as the large, white tent for Amanda's funeral was being placed over the large hole dug for her beautiful little body.

Amanda's passing and enduring the process with her family has forever changed me. It was almost as something clicked in my brain...I am not the only mom to lose her precious baby. Mind you Kyle is buried around many young children ranging from newborn to 17, so I was well aware that I did not walk in these shoes alone.

It's surreal to go sit at the cemetary in front of Kyles resting place and next to Amandas, I don't understand and have realized I never will. I am thankful that they can now be together and roam the pathways of heaven free of cancer. Two very beautiful, caring, angelic little people! I know in my heart they are together once again!

After Amanda passed away, Michelle (her mommy) came over with this pen that Amanda used often. She could record her voice while writing with. On her pen, dated July 23rd 2009, was her soft, sweet voice...it started out with these words, "Dear Kyle..." as she continued on with her letter to him about being a "true friend" and "brave fighter". I will write her letter down and share it with you someday...she knew Kyle was watching over her and she also knew Kyle never wanted to die. Michelle had no idea that letter was on there and we both listened intently with tears in our eyes...what a beautiful gift to have received.

Michelle brought the pen over because by miracle...the pen was in her purse during Kyle's funeral and it recorded the entire service. So for 14 months, I was sad that I did not have any tangible recorded item to recall that day and needless to say...it was being recorded in Amanda's moms purse without even her knowledge!

The bond that Michelle and I share is terribly eery. We cannot believe the similarities in our stories and feel there was certainly a purpose for it all.

We are doing OK I suppose...it's not easier, just different. I miss Kyle terribly and there isn't a single thing I can do about it! I get sad and frustrated. I find things to remind me of him while not a terribly difficult thing to do. His photos are all over the house, his memories in my head, and his entire being in my heart! It literally aches when I realize how much I miss him...!

Ty is now finishing up his high school years taking virtual online classes. It has been working out really well so far. He did struggle terribly the last year he attended high school so we are hoping this will just help him finish it up. Riley is loving 5th grade and has blossomed into such a wonderful little girl. She has decided to learn the violin this year and still has a huge love for horses. I'd love to look into lessons for her again, I just haven't really buckled down and done it.

I started working at a local police department in the victim services unit. Unfortunately for now, it's a volunteer position but I think the training and experience will help me find future employment. Training starts in another week and I'm excited for that, although I cannot believe how many domestic violence calls we receive...my goodness!

We started back at church about a month ago (I think I'm not so mad at God anymore) and it's been good for us! While I will never understand, I do know there are reasons and I have to continue to have faith that God has a much bigger plan than I.

I am thankful for those that continue to check in on us, send us cards and gifts, and pray for our healing. We are doing the best we can, we just have to do it with a very large whole in each of our hearts...

Denise

Tuesday, August 17, 2010 1:45 PM CDT

Amanda Peebles flew to join Kyle in heaven on Saturday, August 14th at 6:45 pm! The following is further information:

Visitation:
Date: Thursday, August 19, 2010
Time: 5 pm - 9 pm
Where: Rundus Funeral Home
1998 West 10th AvenueBroomfield, CO 80020

Memorial Service:
Date: Friday, August 20, 2010
Time: 1 pm
Where: Broomfield United Methodist Church
545 West 10th AvenueBroomfield, CO 80020

Graveside Service:
Date: Friday, August 20, 2010
Time: 2 pm
Where: Broomfield County Commons Cemetary
9th and Sheridan Blvd.Broomfield, CO 80020

Reception: Date:
Friday, August 20, 2010
Time: 3 pm
Where: Broomfield United Methodist Church
545 West 10th AvenueBroomfield, CO 80020

The family requests that in lieu of flowers, donations be made to one of the following organizations. All are 501-(c)3 organizations registered with the IRS wherein donations are tax exempt for the donors. Make payable to and mail to:

"PEEBLES FAMILY FUND / THERE WITH CARE"
c/o There With Care
Attn. Paula DuPre' Pesman
4949 North Broadway
Suite 124
Boulder, CO 80304

www.therewithcare.org303-447-2273

or

"ANGELS FOR AMANDA"
c/o Coors Credit Union
816 Washington Avenue
Golden, CO 80401

The family appreciates your concern and support during these difficult times. Their home address is 377 Oak Lane Broomfield, CO 80020

Saturday, August 14, 2010 2:23 PM CDT

For those Amanda Peebles followers:

http://www.carepages.com/carepages/mandabear/updates/2749846?client_code=tchden&ipc=mcr

Last I heard was around midnight last night that Amanda is expected to earn her beautiful angel wings very soon. She will be pain free, needles free, cancer free, virus free, tube free...free to play with Kyle as a beautiful, healthy little girl that she was robbed of being.

Amanda took a huge turn for the worse this past week as the adno virus and HHV6 consumed every inch of her little, fragile body. Her lungs became too weak and have endured too much as the last healthy organ on her body was also invaded with illness.

I was so blessed to see her a few short days ago. I spent the day with her and it was so good to be by her side. She was fiesty as usual but loved when I would just dish it back to her. She was bossy and sweet at the same time!

Amanda asked me to sit with her and before I could grab the chair and pull it to her bedside she said, "get in my bed!" I was a bit surprised and said, "me?" She quickly and forcely said back, "YES, get in my bed!"

I crawled next to her in her "cold" bed (an attempt by the hospital to help her fevers) and she curled up into me. Her little tiny legs were in the fetal position as she bent them into me in an attempt to stay warm. I gently place my hand on her legs, pulled her into me and rubbed her legs hoping to warm her up from her shivers.

She layed with the blankets over her face because she didn't want anyone looking at her. Her face was very swollen, her left eye nearly closed due to infection and her beautiful curly hair stuck out of the sheets. She then commanded me to "hug me big" so I grabbed her even closer and wrapped as much of my body over her without hurting her or the bi-pap machine that was allowing her to breathe.

"Hug me bigger!" "OK OK" and as I cuddled her as close as I could she demanded, "get out of my bed now!" Wow..! So she said "jump" and I basically said "how high?" I was out of her bed in seconds...smiling of course because really I'm not certain her poor mind is all there. She loves ya one minute, "get out of my room" was the next minute, but don't go too far cause she wants ya back! Oh I love her...I have always said that Amanda is a walking angel here on Earth. Her voice is a soft, consoling whisper with so much wisdom and experience for a 12 year old.

It breaks my heart that she had endured so much pain, hurt, and suffering. I can only wish that she join all of my other little ones in heaven sooner rather than later. Enough is enough...it's time for her to rest!

The report I received last night is she just can't do it anymore...and she was finally told that she didn't have to! Last I knew, she was still fighting the fight during the night...I've received no updates this morning. I pray for Kyle to show her the way, tell her it's OK and just show her the way home. My heart breaks as a constant reminder of our own journey.

I've walked away from this with gratefulness that my little boy doesn't have to do it anymore. I often visit Kyle and tell him, "I would rather live a lifetime missing him than to have to have him live the life he had here!" He is no longer suffering, he is with me every moment of every single day and he is free! That makes my heart happy for him!

Pray for the Peebles family, sadly her sister is 16 and brother is 9...same ages of my kiddo's. I know what is ahead of them and I can only continue to love, support, and pray for them now!

On another note, I keep waiting to hear about Kyle's headstone..."any day now" is what I keep thinking, guess I should pick up the phone and call. It's been well over a week since I finalized the plans.

Enjoy your weekend everyone...hug your kids tight as they prepare to head back to school!

Denise

Thursday, August 5, 2010 10:55 AM CDT

If I didn't really know it before, I now know that Kyle is not still at Children's Hospital...on the 3rd floor...in PICU where I last left him! Yesterday confirmed that for me 100 percent as after nearly 13 months later, I made the walk down that long hallway to visit my sweet Amanda Peebles in the very same room, also currently on a ventilator. How can that be? Who would have ever thought? Not me!

I received a text the night before from Michelle (Amanda's mom) that Amanda was not only in PICU, on a vent, but in the very same room Kyle was in. Yesterday, Jen and I took the stroll down the same hallway that seemed like it went on for eternity. Jen said, "I think I can be ok with this but I will vomit if it's one of Kyle's nurses!" Needless to say, she did not vomit however it was our very favorite PICU nurse leaning over Amanda's bedside...Lauren!

It was weird, it was bizarre and it was theraputic all at the same time. Very eerily similar except different grandparents and I was not the mommy! Jen and I sent Michelle and her parents out to catch their breath and grab some lunch as I pulled up my stool next to Amanda. It was all too familiar as I looked at every monitor, the same drugs hanging from her IV pole, and the same vent tube in her mouth...the same odor from her breath, the same pink tape holding the tubes in place. I reached under her blanket to find her little tiny fingers and I placed my hand in hers. Her eyes opened up and it was then she saw her Denise. She immediately raised her fragile arms to get the big hug she often receives from me upon greeting her. This time, her arms were restrained in order to prevent her from pulling out the tubes that were keeping her breathing. I told her she had too much stuff around her for a big Denise hug but we held hands for five hours as she was awake and asleep and regular intervals. She could shake her head in response to my questions, she smiled at times...she wasn't hurting, she was hungry and wanted me to kidnap her so we could go eat Mexican food, she knew I loved her, she was a bit cold at times, and she was scared. I rubbed the familiar scented PICU lotion along her arm and hand as she complained of itchiness that she couldn't reach due to the restraints.

I saw Dr. Quinones, I saw familiar tranpslant nurses and fellows...we all talked about how I've been surviving the last year. I told them it's certainly not easier, just different. We rehashed a few things, I was told I look much better rested and my 10 pounds back on my body, I was told I was an angel for being able to come back to it all one short year later. I'm not an angel, I do what I do because of my love for Amanda. I told her the day that Kyle passed away that if she EVER needed me to be there, I would be...and I was! Michelle was there with me very single step of the way, and I will return that favor to her...in a heartbeat, no questions asked! I sucked it up and I did it...it helped me in a weird, crazy way!

Please keep this wonderful family in your prayers. Too eerily familiar and very very scary times. Michelle heard them tell me a year ago that these kiddo's never come off the vent, she saw Kyle did not, and now her baby girl is right there...same room, similar problems. I will be there for this family every single step of the way!

As for me, phew...that was a draining day yet helpful for me as if I ever had a doubt in my mind that Kyle was still in PICU, he is not! He's in my heart...

I tried to get photobucket to put up photos from the balloon release however they changed their website and I can't quite figure out how to create a new slide show just yet. It was a wonderful day...I hope Kyle and his buddies caught every single balloon that was sent to heaven.

His headstone is almost done, of course I had to request a couple more changes to it before they start the engraving process. I will let everyone know when it's placed at Kyle's gravesite and of course I will take lots of photos!

I sure miss him...I miss his voice, his jokes, his smiles! I miss his touch, his warm little back, his blonde hair! I miss his laugh, his hugs, his back rubs! I miss making him buttered noodles, corn dogs, and ramen noodles! I miss buying him Izzy drinks, T-shirts with saying about taping up his sister, and all of his video games! I treasure my time with Kyle, each photo I find tucked away, each paper he wrote in school like "How to Make Mean", I miss it all! I smile when I see his things now...I seek out his possessions, and I smell what I can with hopes of catching his scent. I miss him...I've never lost anyone close to me before, I can't believe my first experience was with my son! I've now lived through the worst loss...I feel I can accomplish anything now! I miss Kyle, every single minute of every single day...

Thanks for stopping in! Thanks for walking this journey with me...

Denise

Saturday, July 17, 2010 9:56 AM CDT

Release a balloon at 1:03 MTN time on Sunday, July 18th...!

Send Kyle some love to heaven!

Wednesday, July 14, 2010 3:21 PM CDT

We are quickly approaching the 18th of July, one year ago that my little boy received his angel wings and left us here on Earth. I cannot believe it's been one full year since I've held his soft, gentle hands...heard his wonderful voice...touched his soft and fragile skin...tickled his arms...rubbed his back...snuggled up behind him and held him tight. Unbelievable! Who would have ever thought? I never imagined this as the end result. I cannot believe it's been almost a year, nearly 365 days! Am I still in shock? Somewhat! I'm I glad he no longer has to hurt, endure pain, and suffer? Absolutely! Do I miss him? More than most of you will ever comprehend!

We are surviving. The days of tears are slowing down with some days are harder than others. I can recall the happy times too now, I can look at his photos and smile, I am starting to think about watching some home videos to see him smile again! When I see him smile, I smile too! My heart is forever broken, I'm not sure it will ever be repaired. I learned so much from Kyle though, wow did he teach me so many important lessons in life and I will continue to share them with the world.

The stories of Kyle are fewer now, although I did run into Justin's family (Kyle's best buddy) last week and they told me that Justin often thinks of Kyle and talks about him. I'm happy when people remember my little boy!

Anyway...I'm trying to prepare myself for the anniversary of Kyle's passing. Do we celebrate his life on that day? Send him balloons from his gravesite that day? Do we simply ignore that dreadful day all together? I certainly have no answers that are right or wrong. I sometimes just to struggle to keep my head afloat. I don't understand life sometimes yet I still do believe everything happens for a reason...like it or not!

I continue to pray for Amanda Peebles as she continues to battle each and every single day. She has not a caught a break and I don't understand why. I continue to think of her each and every day though, and I ask that you do too! She is back at Children's Hospital, Michelle said she is having issues with her heart now and she's terribly thin. I haven't mustered up the strength to return to that hospital, I will someday if I need to. I'm unsure as to how I would handle it...most days I think I'd want to head to PICU to find my little man knowing full well that he will not be found...

Kyle's headstone did arrive last Friday. It's in Longmont now as they begin to engrave it. It's PERFECT, so much better than I could have dreamed it to be. I cannot wait for it to be delivered to him, I will be sure to share it with all of you. I know Kyle will love it too!

Thank you for checking in with us...we are still doing the best we can to live our lives without Kyle in it! Phew...tears are filling my eyeballs, let the deep breaths begin...inhale...exhale...inhale...I miss you, Kyle Ray Lindgren...so very much!

Love Mommy

Tuesday, June 22, 2010 10:54 AM CDT

I think this next month might be a bit of a stuggle for me. I will never forget July 3, 2009 as Kyle was wheeled down to the PICU at Denver Children's Hospital. An oxygen mask was on his face and tears rolled down his eyes. He hated PICU (don't know anyone that likes it). His oxygen levels were over 15 and I feared the worse, Kyle being placed on the bi-pap. The faces that once wore smiles were no longer present as fear became the look of many. I can see in everyones eyes that approaced me that they knew something I was unwilling to accept or recognize. My little boy was not going to come out of PICU alive.

I was told in such gentle ways that "nobody comes off the vent" and I still believed that they did not know my little boy! He was a fighter and he WILL survive! I didn't believe my little boy would every not beat the odds and survive. He had so much to offer this world!

Kyle's favorite holiday, the 4th of July, came and went. We all refused to watch the fireworks that night. If Kyle couldn't see them, neither would we. We closed our blinds to our room and continued to focus on Kyle and getting him all better. He loved the 4th of July...I think even more than Christmas!

And as I never wanted to believe, Kyle passed away on July 18th, one day after his sisters birthday.

So you see, July pretty much sucks for me! I have no idea how to get through the month but as always, I will do it! Kyle is resting right next to where the city fireworks are launched. I ensured he was faced in a direction where he could continue to enjoy the display. He will have one of the best views in town.

Thanks to the fundraiser put on by Westlake Middle School, enough money has been raised to pay for Kyle's headstone. With the extra money, I made the decision to purchase the plot next to my little boy. Some of the anxiety has left me as I know for certain that I will rest next to my little boy when God calls me home too!

I could see Kyle's site every day and would panic for the last 11 months when I'd see city workers parked by him. I feared they would be digging a hole next to Kyle and I'd have to throw my body over that spot and stop them from placing someones body next to my little boy! I had visions of going up in the middle of the night and refilling the hole they had just dug to ensure nobody but me was next to Kyle. OK, I am embellishing a slight, little, tiny bit...however, I no longer have to fear any of those scenerios as that space is mine!

I am thankful for those that continue to check in on us. We have moved to our new home and are trying to settle in. Ty has been gone for two weeks, one more to go. He was off to Missouri with my dad and is now with his girlfriend in OK. Riley and I have been having a relaxing time and have unpacked a little bit here and there. We've been busy watching Jack and TJ (Ted's boys) play baseball this summer and getting some swimming in at my parents house. I realize this may be my last summer at home so I am doing my best to enjoy it. I hope you are all enjoying your summer filled days as well!

xoxo -

Denise

Monday, June 7, 2010 11:09 PM CDT

I hope with the end of another school year, that each of you are enjoying your time with the kiddo's. I celebrated my 41st birthday, however did learn over the last year or two that they are "just another day"! I recalled my 40th birthday, all the hopes, dreams, and wishes that I held so closely to my heart. The day was just so sad as we had forced Kyle to get in a wheelchair and head to the parent lounge to celebrate with me. He was in terrible pain and it was a short celebration. My 41st, well my amazing boyfriend surprised me with the Coach person I had eyeballed a few short weeks prior. We then had a romantic dinner at Bonefish. I sure love that guy! Ty had also woke me with breakfast in bed, complete with a bowl of Honeycombs, a bowl of blueberries, and a glass of ice water...I too love that guy!

The kids and I have moved finally. It's a cute little place that we made our own. Ted, Jen, Susie and I painted the majority of the rooms (with one left to go) prior to us moving in here. Then the moving began a week later...can I tell you, I have so much crap!!! I was embarassed at the amount of things that had to be moved. I wouldn't let anyone throw anything away for fear that some small reminder, gift, trinket, or photo of Kyle might be buried within the box! I will get through them all, I promise that, however I can't just throw things away any longer. I am contemplating a hoarders intervention of course! Anyone have connections to TLC? LOL!

The job thing is just not going well. I have had some interviews however I also know in my heart, I really wanted to enjoy the summer with my kids, Ted, and the boys. I'll figure things out for fall, job or returning to school.

My Iphone ended up broken as well. I am using Kyle's cell phone. There are two videos on it from when we were in bone marrow transplant. I see him, I hear his voice, and he is humming background music for my videos! I stroke the screen of the phone and softly smile. That is what I have left of my little boy. There were text messages he sent me too, "when are you coming back" "are you ever coming back" and instructions on exactly which video games he wanted me to pick him up before returning to him. Carrying his phone is bitter sweet but I find myself seeking ways to see him again.

It's nearly 11 months now. Life is weird, my hurt is deep, my heart is sad, yet the reality is that Kyle is not returning to me. I know he is safe now, pain free, and finally resting. My eyes swell with tears though...a do find smiles creeping across my face when I think of him but the pain is deep. I am not selfish though, I do not want him here with the life he was enduring. I will spend the rest of my life missing him rather then see him struggle to survive and kick cancer's ass. Plain and simple...it's a mommys sacrifice.

I have still removed myself from the childhood cancer world though. I remain in touch with Amanda and did recently read of Olivia Culpeppers passing. Reading her mom's words were like reading my own. It's the little things that hurt the most...

I have an appointment at the headstone place again tomorrow. I am going to go over the details of his headstone, not all of them of course. I have the basics down, and then would like to see how much room I have left for words, a poem, or something special that I choose. The granite is to arrive from India to Minnesota on July 2nd. Minnesota will cut the granite to the style I have chosen and then will ship to Longmont. I am hoping by September, Kyle will have his beautiful gift from me, his family, his friends, his classmates, his community, and complete strangers! I am anxious to share photos with you all.

By the way, thanks to those that leave flowers and gifts for Kyle. It warms my heart and makes me smile knowing that people still think of my son. He will never ever be forgotten, this I am sure of.

Thank you for continued donations and gift cards to my family, guestbook entries, thoughts, and prayers. I am still learning to breathe again...still finding the hope and faith that I always held. I continue to focus on the positive and cherish each day as it comes to me....ok and I bury my face in books when the positive is hard to find!

Keep it all coming...

Denise

Sunday, May 2, 2010 12:09 AM CDT

Today I sit here in awe as the Miles for Kyle fundraiser was an event to remember! The National Junior Honor Society at Westlake Middle School, my friends, my family, the community, and God made great things happen for me yesterday as $4500 (and counting) was raised to purchase the headstone for my little boy, Kyle. I am in tears and filled with emotion as this is the greatest gift that I could leave to him and not have to worry about the burden of how to pay for it. The headstone means so much more to me as it was not only a gift from me, but a gift from YOU! My heart if forever grateful!

The fundraiser turned out to be a beautiful day as Kyle's classmates wore Miles For Kyle t-shirts and walked around the school track in hopes of raising money for my family. I was surrounded by media, friends, family, classmates, teachers, and our community for over an hour. Makenzi was so thrilled to report to me by the events end that she has not only made her goal, she surpassed it!!! We released balloons only after I was sure to kiss one for Kyle to catch! Tears filled my eyes and so many feelings filled my heart and soul! Thank you so much....

With the money raised, I told the organizers that they can come with me to the headstone company in Longmont to deliver the check themselves. The headstone is set to arrive hopefully by the end of August or beginning of September, at least that is my hope. The details are still being worked out on what to engrave and what photo to place on his beautiful headstone!

With the remaining money, I am hoping to purchase the plot right next to Kyle. It is very important to me that when I too shall pass, that I can be right next to my little boy until the end of time!

Thank you...I know Kyle is smiling big as he always did! He knows that this is very important to me and his friends!

Thank you Channel 7 and Corey Christiansen for running our story Friday night and once again on Saturday morning! You did a wonderful job sharing our story...

Thank you to the Boulder Camera and Broomfield Enterprise for also sharing the event with our community and helping us raise money for the event.

Thank you to those that donated their time, energy, funds, raffle items, t-shirts, and love!

I am humbled...

Denise

Wednesday, April 21, 2010 5:25 PM CDT

Hello...and so soon, can you believe it?!

Few things with regards to my little man's headstone. Longmont Memorial contacted me today to tell me that the stone I selected will arrive to a company in MN on July 2nd (my goodness, it was ordered in February). It will then take Melrose Company a few weeks to cut the stone into my selected shape and then shipped to Longmont. They will then engrave the headstone and place it here in Broomfield. That is one heck of a long time! I had hoped it would be done by July 18th and it could have probably been done had I not been so selective in my choice. I want it perfect...and exactly the way I wanted it! Of course, I'm still ironing out the specifics of what to engrave. I will be meeting again with Longmont soon to work on those ideas! Can't rush perfection! I'm so anxious to see the completed headstone and share it with you all!

I have the specifics from the fundraiser being put on at Kyle's school. Here is the email I received from Makenzi's mom today:

"Miles for Kyle Walk-A fundraiser to help raise money to purchase a headstone for a fellow classmate who lost his battle to Leukemia last year.
Saturday, May 1st from 12:30-1:30
Westlake Middle School Track
Registration fee to participate is $10 or for $20 you will receive a t-shirt, wristband, bottled water and access to walk.
We will be holding a raffle during the walk with prizes from local businesses.
A fun event for a great cause!
You can register the day of the event or pick up a registration form in the front office of Westlake Middle School."

As for the kids and I, we are continuing to put one foot in front of the other each day. Ty has his good days, bad days, and some bad decisions tossed in there as well. I wish he'd be up for therapy, I think he could really use it.

I recently did some testing for a job in Boulder. I passed the initial testing stages and have another day next week with more testing and interviews. I continue to look for jobs however I seem to be most focused on finding a home for the kids and I. I found two today that I am anxious to see. I get to see one of the places on Friday and it's available June 1st. Keep your fingers crossed that I find something to remove that added stress from my checklist. Wait til I have to remind Jen that she would pack Kyle's room for me...

Sunday was 9 months since Kyle passed away. It was one of the most difficult days for me. I sat at his grave from 2 to 7:30 pm. I just sat with him, took in the sun, the chirping birds who appeared to be gathering things for their nests, and met some nice people. Jen eventually came up to bring me a beer and a coat. We sat and talked, and we are both sure Kyle was tired of listening to us babble like we did in the old days in the hospital.

I miss Kyle...can I say that enough? I have never missed something so much in my life...! I wish he would just let me know how he is doing, and maybe...just maybe that would help me! He visits Tyler in his dreams often so now I try to have Ty relay my messages to him. I've had some Kyle experiences myself...I just miss him! I feel terribly empty inside.

Congratulations to my Uncle Darin who is getting married in Alabama this weekend, wish I could be there!

Hope to see you May 1st!

Denise

Thursday, April 15, 2010 11:27 AM CDT

Phew...it sure takes me awhile to get here. It seems that I often feel the need to update the same day I am heading out to therapy. Nothing like crying before I even walk in her door!

I sure miss Kyle...I don't think I can say that enough! That little boy (as many of you know) had such a way about him...he could steal your heart in a moments notice!

No news on the headstone I ordered back in February. I keep meaning to call them to see if the stone has even arrived from India yet. I really have to nail down some specifics for his headstone just in case they call me first. I just want it perfect.

I received word that a fellow classmate at Westlake Middle School, Makenzi, took on a project with the National Junior Honor Society. She organized an event/fundraiser titled, Miles for Kyle. There will be a raffle, t-shirts, and wristbands at the event. It is her hope to raise lots of money to put towards Kyle's headstone. The event will be held at Westlake Middle School at the track. They are shooting for noon and if that changes, I'll be sure to let you all know. She has worked very hard on this and I truly hope it's a huge success for her...and our family of course. I hope to see MANY of you there! She's also the little girl who drew the infamouse "Kyle" in the sand that happens to sport the main page of my cell phone!

I am still in search of a place for the kids and I to live. My lease is up May 31st, which really isn't much time. I think I'm also going to have a garage sale so those that help me move, don't have to carry too much! Proceeds will also go to Kyle's headstone! If anyone else wants to sell some things, let me know and you can join me at my two day event in May!

I'm doing my best to keep this upbeat...so I better close for now! Thank you everyone for your continued love and support as I try to learn to live my life without my sidekick...

Hugs to you and yours,

Denise

Saturday, April 3, 2010 1:12 PM CDT

Tomorrow is Easter...another one of Kyle's favorite celebrations. I view over in my head the 12 years that he loved to color those Easter eggs. He would grab each one and put so much thought and effort into each egg. He would choose his colors and create a masterpiece and with each one he would plunge into the color of his choice (usually blue). Kyle also had a tendency to just let the egg sit for 10 minutes in one particular color. He would be so proud of how the color became so deep and rich, so perfect in his eyes. Awww...so anal and cute he was.

We created the idea of Easter brunch many years ago. We used to have dinner with my family however it turned to Easter brunch one year when my parents were returning from Hawaii that morning. We came up with the idea of brunch and thus the idea took off.

For brunch, all of the little ones would color their eggs while the adults would get brunch ready. Tyler and Kyle would get paid money by my mom to hide all of the eggs. Each egg had the kids initials on it and they could only find and collect their own eggs. Kyle would grin ear to ear with his assignment, not to mention the fact he received payment for this. He would then help the struggling little ones find their own eggs. He was proud to be a big kid.

Last year, we sat in Children's Hospital bone marrow unit not caring a single bit that it was Easter. We just wanted to focus on his healing and heading home. Ed had given both Kyle and I Easter baskets, we were also given Easter basket donations from the hosital. I clearly remember seeing the baskets sit in the window with some of Kyle's favorite goodies. And there they sat because he had no appetite to eat...nor did I!

I try to focus on the good in life, or at least the good that I can find. I stare at his photos that are placed through out my house and I miss him! I don't know how to live without him, I try each and every single day and yet I just can't find it yet!

Tomorrow is Easter and I am yet to return to church. Tyler doesn't believe in God anymore. I asked if it was because Kyle passed away, and he quickly responded with "yes"! I don't blame him. I struggle to come to terms with there EVER being a reason that my little boy had to die at 12 years old. Such a terrible death, such a struggle, such a battle....I see absolutely nothing to justify this, no reason, no purpose! Life will simply never be the same and nobody can convince me otherwise...

I stare at the pile of grief books that sit upon my dresser, right next to the angels I've received from so many of you. There are three beautiful photos of my little man and the mood ring I had bought him at the gift shop at Children's. Today, I thought to myself that I should just box up those books. I have tried to read a few but I have quickly come to realize that everyone grieves differently, none of the books touch me and continue to sit and collect dust.

Kyle was the greatest thing on Earth to me. My wounds are deep...deeper than every imaginable. I continue to live each day one day at a time. And I appreciate all of compliments of my strength and how I appear to be so happy, and "it's so good to see"! Yet...I am dying inside. I still do my weekly therapy, I still work out, I still love my children and family...yet I'm completely and utterly lost in this world. I have good things, things that I appreciate and cherish...it's just life without my little boy is a very hard life to live!

I feel him, I feel him with me very often. I see signs of him each and every day. He talks to me and I answer. He tells me he is "OK" and he's "happy where he is"...and for those moments with Kyle, I can take a deep breath and know he is no longer in pain, no more scars, no more hurt, no more suffering.

Ty and Riley are doing very well. We are close once again, and each day feel more like a family than the day before. My relationship with them has blossomed and that makes my heart happy!

We look forward to Easter tomorrow...we will continue to take each day as it comes and will always keep Kyle close to our hearts and our minds!

Love...

Denise (Kyle's mom)

Friday, February 26, 2010 10:16 AM CST

The headstone is ordered! Although what a bitter sweet, crazy day...I am keeping it a surprise until Kyle receives his gift from me and the many of you who have donated to the Kyle Lindgren Memorial Fund. We are half way there on the cost of the headstone although I was able to put half down and then set up a payment plan for the remainder.

I will tell you that the granite is from India and could take up to six months to arrive here in the States. The granite will arrive from India and then is shipping to a company here in the States. That particular company will then shape the stone and base to my exact wishes. The headstone will then arrive in Colorado so the company I chose in Longmont can engrave and personalize the stone. I have my ideas on that however I thankfully have plenty of time to get it all just right before this step begins!

Setting the stone is another story, this has to be done when the weather is warm and cooperates. They can do the foundation when Spring and Summer roll around. That way the headstone will be ready to go up when it is completely engraved. I would be happy if it could be done by summers end, however more happy if it were sooner than that (I have visions of a July 18th setting in my head). I just know not to rush it as I want it as perfect as it could possibly be for my little boy! We always went through his journey with no regrets, and I continue to abide by that simple rule!

Yesterday, Ted and I went to Longmont to sign the contract and get the process rolling. I couldn't find it in me to write the basic information for his headstone. It breaks my heart to write it down on a simple piece of paper. I NEVER dreamed I'd have to write not only his birthday but his date of death! Phew...it brings me to my knees each and every time I have to write it, say it or even think it. Thankfully, Ted took over and did this for me. So terribly difficult...

With that piece of bitter sweet news, I thank you all for your continued thoughts, prayers, love and financial donations to help make this all possible for me and my family. I thank those that continue to hold fundraisers for Kyle and our family. It's amazing that in my time of need, "something" always finds it's way to me to help me carry on as my heart is just crumbled into pieces and hope is sometimes lost. Sometimes it's a calendar someone made of Kyle's photos, a piece of jewelry that reminded them of my little boy, a card, a poem, a check, a gift card, or an invitation to dinner....thank you!

Many of you know that my love for Kyle was deep and powerful. Our bond was unbreakable and unique. Kyle was my best friend, my love, my heart, my soul, my son! His unconditional love for me was something so precious, so rare, and completely special. We battled for many years, side by side, hand in hand, from the time he was 3 until his death at 12! Those who had the opportunity to witness Kyle and I, saw a true gift from God first hand! I miss that little boy...every inch of his little body, I ache and I hurt as I try to carry on the way he would want me to! Some days are defintely harder than others...and I don't believe time heals all wounds, for this wound is a life long one that will scar me forever!

I find myself looking for signs from Kyle. Wondering how my little boy is doing in Heaven. Wondering if he thinks about me as much as I think about him. I haven't dreamt about him yet, however Ty says Kyle is often found in his dreams. He says Kyle is healthy and happy...and for that, I too can be happy for him. I know someday he will visit me, only he truly knows when I will be prepared for that speical day. I look forward to it...I want to see him and hear him. I want him to tell me that it's all OK and he is finally at peace and whole again!

For now, I stare at his photos, look in his empty room, and each day as I exit the garage...I see his electric scooter, his bike, his shoes and remember those many days he played with a big smile across his innocent little face. I know now he is pain free and flying high as he always dreamed he would some day be...keep flying baby boy, gosh I miss you!

Friday, February 26, 2010 10:16 AM CST

Thursday, February 18, 2010 6:18 PM CST

I'm back, and so soon...

7 months ago today at this exact time, I was walking out of Children's Hospital Denver without my son, my Kyle...for ever! After he passed away and I spent a few of my last hours with him, I had made a promise to sweet Amanda Peebles that I would visit her before I left the hospital that day. A few were surprised I held true to my promise that day, but I was not leaving without seeing her.

I remember sitting with her frail little body as she kept her head hung low. Her little legs were "pretzel" legs and I could sense her hurt and saddness. I touched her sweet little shoulder and told her that Kyle had passed away. A few short hours prior to that, I had held my cell phone up to Kyle's ear so she could tell him that she loved him, so she could say good-bye to her friend.

7 months later and Amanda is once again in the hospital inpatient unit as she continues to fight for her life as well. My heart aches for her and her family as they battle with cancer, a bone marrow transplant and all of the problems and side effects that can go along with it. Please continue to pray for her, she's such an amazing little girl.

Today, 7 months later, I had my first appointment to choose a headstone for Kyle. Ted, Jen, my mom and I went to a place in Longmont that Ted's family highly recommended. It was a successful meeting and they will be emailing me some of our ideas (and probably prices) this evening or tomorrow. I have another appointment on Saturday with another company in Brighton.

I can say I am grateful that I did not jump to any decisions immediately following his death. I had all of these ideas that were ideas that I liked, or I wanted for Kyle and boy would they have been all wrong!!! I wanted an angel, or an angel holding a heart...I wanted things that were not Kyle at all and today, I would not like for him either.

I went in knowing all of the things that I did not want. I didn't want tear drop shape, I didn't want a heart or an angel, I didn't want this color or that color...I didn't want the emphasis on cancer because that's not what defined my little boy. Now I do know I want his photo (not sure which one yet), I want a vase (I think), I want his birth month and month of death spelled out and not abbreviated. I wanted black but changed my mind after the first 10 minutes of talking. Phew...what a process! I'm anxious to see what they have come up with thus far with what I have chosen. I wanted the headstone early summer but now know I'd rather wait and have it perfect, just right for Kyle.

Now of course upon coming home, Tyler once again told me that Kyle wouldn't like a few of my ideas or the color of granite I was leaning towards. He doesn't want to come to the next appointment to help me either. Jen and I were wondering if he just said that to be difficult. I am taking his thoughts a little bit though and will probably price a few other colors. I feel like I often tend to pick the most expensive anyway, not on purpose though. Kind of like when you look at a page of shoes showing a wide varitey of prices, and it never fails I pick my favorites and they are the most expensive on the page. Is that what we call "champagne taste on a beer budget???" Needless to say, if this granite comes in high (it has to be imported from India) then I will look at a couple others I liked as well.

I miss Kyle! I miss him more today than I have in awhile. Sometimes, I can feel him and hear him within my heart. He continues to make me smile...it's so bitter sweet. My desire to hold him again, to smell him, touch his soft little body and feel his heart melting hugs just tears me up. He was my rock, my side kick, my life. Nothing mattered to me as long as I had Kyle with me. I often gave up everything to ensure he was doing OK and still here fighting the fight. I know he got tired. I know he hated swalling handfuls of medications that made him lose his hair, his eyelashes, his appetite, and sometimes his sense of humor and quick wit. He hated the scars, the surgerys, the tubes, the procedures. I remember him sitting in his hospital bed so upset about the number of scars they were leaving on his body. To cheer him up I'd tell him, "oh just wait, someday you will be digging through your chest hair searching for those scars to show off to the girls." He'd just give me his terribly cute little grin. I also know the pain was unbearable in the end. I recall my dream three days before he passed away, "mom it hurts bad, it hurts so bad. The worst it's ever hurt before!" And it was with that dream, I knew my little boy was letting go. I told him it was OK. Before they put him on the vent, I told him if it ever got to be too much, it was OK to let go and that I would be so proud of him and would love him no matter what.

Kyle didn't let me down, I know he wanted to hold on for me. He feared for how my life would be without him. He feared not being here to take care of me...but without hesitation, I had to tell him that it was OK to let go and be with Jesus. Phew...I can't believe it's been 7 months that I have began this difficult journey without the most amazing, brave, and inspiring hero ever. Kyle taught me more in his short 12 years of life that I had ever learned in the 40 years of my own life! He is terribly missed...

7 months later...and I'm still learning to breathe, still trying to figure out what "normal" really is...and wondering if my life will ever truly be whole without Kyle in it!

Thanks Jen, Ted and mom for standing by my side through this most difficult time in my life...without your love, support, and hope I'm not sure where I'd be today!

Denise

Tuesday, February 9, 2010 9:48 AM CST

Ahhh...where to begin?! Two months later and I struggle to update. I sign into Caringbridge and my heart just races, my hands start to sweat a little, and the tears continue to swell in my eyes as the memories come rushing back in. The memories of updating with great news that "Kyle is 100 percent donor cells" to the numerous requests to "pray for my little boy!"

I miss him more these past few weeks than I did the previous few. I sometimes think that I'm doing pretty darn good and then other times I want to collapse in the reality that Kyle passed away, phew is that a hard pill to swallow...still! I don't understand, I don't get it, and I never EVER thought this would be the end result of all that he endured over those 9 plus years. My little boy is gone...at least physically he is no longer here. Talk about difficult to comprehend.

We are doing alright I suppose. Ty has had his share of bad decisions, great days and not so great moments. He misses Kyle terribly, I can see it in his eyes. Before the Super Bowl started, Ty sat down to watch some pre-game talk. He had to turn the television off as they showed Drew Brees visiting the Children's Hospital in New Orleans. Drew was visitng a child that had a recent bone marrow transplant. Ty turned around and said, "I can't watch that stuff!" I told him I agreed and that it was OK to turn it off, and he did.

Riley has switched elementary schools. After Christmas Break, we jointly made the decision to pull her from the only school she had known. Kyle attended all 5 years there as well. I didn't realize how it even impacted me to go to that school each and every day, to see familiar faces, and feel as thought I'm "the mom who lost her little boy!" Needless to say, the change has been very positive for not only Riley, but myself as well.

I've also recently found out that the house the kids and I are renting is up in May, not to be extended as the owner is placing the house on the market. Now the journey will begin of finding another place to live...which doesn't sound too bad (although it still stinks) except for the fact that I will have the daunting task of packing up my son's bedroom, all his belongings (and there are many), and moving to a home that will not have a bedroom for him. Jen did offer to pack his room for me, which will help.

It's the little things that really take your breath away. The other day at Quiznos, someone asked for a water and the young man behind the counter reached for a stack of cups to hand to the customer. Why? Why did the stack of cups have to be the same white with blue swirls that I had retrieved from the cabinets at Chilren's Hospital? The same cups I had to fill over and over for Kyle as he had to swallow handfuls of medications in hopes to get him better.

My recent panic came when I realized I had three computer towers stashed in an extra room just off the family room. I knew there were pictures on each and every one of them. Pictures of Kyle since he was a little toddler until the day he passed away. What if something happened to all of those memories? So yesterday, Ted and I loaded them up (any my stupid laptop that is completely shot) and took them to a local computer store. I expressed to the gentleman that I did not care about ANYTHING on those computers except the precious photos of my little boy who died last summer.

He told me he would retrieve the photos for me yet couldn't guarentee how much it would cost. He said he'd give me "a deal" and would get back to me today. I again said, "I don't care how much or how long. I just absolutely need all of the photos!" I've had anxiety since dropping off my old, broken computers. Needless to say, my dumb laptop is shot as well. I called HP who refused to help me repair it unless I sent it to them and paid a fortune. I vowed to NEVER buy an HP again!

My lesson on that one: always have my pictures in more than one location at all times, you just never know do you? So that is one of my most recent tasks at hand!

Another task, I am ready to start the search for the perfect headstone for my hero, Kyle. I have three places I need to make appointments with. There is a small amount in the Kyle Lindgren Memorial Fund to get me started. I think I can make a deposit with that and then continue on with monthly payments to ensure Kyle's resting place is perfect. I also know his Middle School is doing another fundraiser to help raise money for it. The Pampered Chef fundraiser helped out by raising over $400, and the BJ's fundraiser raised over $200 in sales.

I told Jen last night that I was thankful we didn't rush out and buy a headstone right away, my ideas and thoughts have totally changed. I want from something I wanted to now something I think Kyle would like. Kyle was a simple little boy, nothing fancy or unique. And, I know Kyle would not want me to go "all out" for him, he was a bit money savvy. I am excited to start the journey of looking for something "perfect" for him. He certainly deserves it.

When I go to visit Kyle, which is a hop, skip and jump from my place (another sad reason to be leaving)...I truly enjoy seeing the gifts and flowers you continue to leave for him. It warms my heart to know that you all continue to think about him and share personal time with my little boy.

I continue on with therapy once a week, Dave Cohens foundation donated the first four sessions and then the therapist is now donating her continued time with me. I often tell her that I am just "all over the board", and there is so much to talk about, cover, and work out. Not only did I lose a part of me...in the whirlwind of chaos, I had divorced, moved, am unemployed and have been since 1995, I lost all control of my other children as I focused on Kyle and lived at the hospital with him, AND I lost Kyle on top of all of that! My poor therapist...

I still haven't figured out what I want to be when I grow up, which leaves me trying to ponder that. I find myself asking Kyle to guide me in the right direction, I can only hear him gently whisper, "not now, it's too soon!" I do have so much to focus on and a girlfriend recently told me to take one task at a time, first and foremost the upcoming move. Probably not a bad idea, otherwise I can just overwhelm myself.

Nearly 7 months later and I still haven't come to grips with much. Kyle is gone, he's not coming back, I can't touch his things, and I talk to him often! I am focusing on photos and his headstone right now, attending therapy once a week, still dating Ted (who has been my rock), learning to be a family of three, and have an upcoming move ahead of me (I'll let you all know when so you can clear your calendars to help right?)! Oh and the Saints won the Super Bowl, way to go guys!

I won't promise that I'll write anytime soon, however I must admit that it's been theraputic for me this cold morning!

Many thanks to everyone who continues to follow our family and has helped us on our journey back to "normal", whatever that is!

Denise

Thursday, December 3, 2009 6:29 PM CST

Happy Birthday my sweet boy Kyle,

On December 1st you turned 13 in Earth years! I'm not sure what you are in Heaven years but I am guessing you are still my sweet precious 12 year old. GOsh, I can't believe you are no longer here to celebrate with us as the adorable, blonde haired, wide smiled little boy that you were. Instead, I just get to feel you inside my heart and soul...I can't touch you or see you any longer and wow does that break my heart!

I hope you liked the balloons that Ty, Jack, TJ, Ted and I sent up to you before dinner on Tuesday. We each picked our special color and sent them up to you, and of course we left a few at your gravesite before heading over to BJ's for dinner.

There was a great turn out for your birthday. Lots of familiar faces to help me get through the difficult day. We raised even more money for your headstone as well. I haven't really picked out what I want on there yet, however the day will come soon that I can order you one and place it where your body is resting.

Phew, rest is probably nice for you. Each day that a fight back the streams of tears, the only thing that keeps me going is knowing that you, my love, are no longer is pain. You no longer have to endure the hell that came with fighting cancer over and over. Granted each day, week, and year...you took it like a champ with grace, dignity, and inspiration to many. I can only wish that I could be half as brave as you my sweet boy!

So many people have so many wonderful things to say about you. The amount of lives you have touched and altered continues to grow. Mrs. Schroder was telling me about last October, before we found out you relapsed yet again, that she was trying to get you to go to Outdoor Ed. It was when you finally told her that you "couldn't leave your mommy" that she truly got it and never asked again. That just tears me up inside as I realized how difficult it must have been for you to leave me here.

I told you recently that I'd rather endure a lifetime of missing you than for you to be here hurting and suffering. I do know in my heart that you are in a much better place now and I can find the time to smile at the wonderful memories and lessons that you have taught me over those 12 years. So my precious boy, I must thank you for all that you have brought to my life!

I continue to struggle, yet that is normal too. You were a HUGE part of this family and almost like the "glue that kept us together". I started back to therapy a few weeks back and continue to go once a week. I have committed myself to the next year. I am going to look into therapy for your big brother soon as well, he seems to be getting into a lot of trouble and is struggling with your loss. Now Riley on the other hand, seems to be OK but she sure misses you too. And Nan, well you know her, she cries at the mere mention of your name...she misses you so much!

We decorated our Christmas tree the other day. I finally convinced Ted that I REALLY wanted a real one this year...and I got it (smile!)! We put all of your precious ornaments on it, those that you made, picked out, and were given to us. I love seeing your photo on the tree and yet again, I still KISS your face every single time I see it!

I often say it's going to be a LONG life without you by my side, and I mean that! We will carry on with grace, dignity, and a positive attitude as you would always want...but I will not deny that my heart aches for you. You got me, you understood me, you loved me unconditionally, you cheered me up and made me smile when I was down, sad or lonely...and although I can feel you within me, I sure miss your touch and your hugs! You always did give the best hugs...the ones that make me melt with each one!

I miss you angel...but then again, I think you already knew that!

Happy 13th Birthday Kyle! I love you!

Love your FOREVER mommy!

Monday, November 16, 2009 10:04 PM CST

Ok Everyone, I finally got the confirmation from BJ's Brewhouse and we are set for Tuesday, December 1st. BJ's will have donate 15f all food sells from guest that come in with a Kyle Flyer. BJ's art dept is in the process of creating our flyer so once we get it we will post a link so you can print yours. The ideal time to go to BJ's on the 1st is 5-9pm, but they will honor the donation as long as you bring in your flyer whenever you go.
Also, please don't forget that we also have a Pampered Chef show scheduled for Thursday the 19th. If you are interested in attending please email me and I will get you the details. For everyone else please feel free to Shop Online to grab whatever you need for yourself or for holiday gifts.To shop online just go to http://www.pamperedchef.biz/dorispchef , click on SHOP ONLINE, next screen - "host first name" type "Kyle" and "FOR THE LOVE OF KYLE" should pop up. Click on that, and begin shopping. All orders will arrive in plenty of time for Christmas and will be shipped straight to you.
Just a reminder, we have made some changes to Kyle's account since Ed's filing. The new account is at Frist Bank North and under the name The Kyle Lindgren Memorial Fund. The reason for the fundraisers is to get Kyle the headstone he deserves.

Recap:
New Account Name, no more A Cure For Kyle.

All donations can be made payable to:
Kyle Lindgren Memorial Fund
First Bank North

Mail your donations to:
Denise Lindgren
1100 Inverness St.
Broomfield, CO 80020

Fundraisers:
1. Pampered Chef Party Nov. 19th show up at Denise's or shop online.
2. Dinner at BJ's Brewhouse in Westminster for Kyle's birthday Dec. 1st. Watch for flyer.

Thank you everyone for your continued love and support!
-Jen

Monday, November 9, 2009 9:42 PM CST

Hi Everyone!
It has been a long time since I last updated Kyle's site. In fact it was July 10th the last time I talked with all of you. On July 10th I got to report that Kyle transitioned from the occilator to a standard vent and that he could squeeze our hands and wiggle his fingers and toes...that makes me sad. Since then it hasn't been the easiest ride for anyone, but we all find a way to get through the day.
The reason I am updating is because we have some new information for everyone. We have changed Kyle's account over to First Bank and it is now known as the Kyle Lindgren Memorial Fund. We are hoping to use that money to purchase Kyle the headstone he deserves. I have done some looking just to get an idea of cost and it is pricey! We are looking at spending upwards of $4500 to purchase and install the headstone. With Ed filing bankrupcty, Denise has been left holding the bag on medical and funeral expenses, so this isn't going to be an easy task. We are hoping to jumpstart this new account with a couple of fundraisers coming up soon, details below.
Denise has scheduled a Pampered Chef Party fundraiser for Thursday, Novemeber 19th. If you are local and would like to join us send me an email and I will get you the details. For those of you that are busy or out of state you can still help out by shopping online. Simply go to http://www.pamperedchef.biz/dorispchef , click on SHOP ONLINE, next screen - "host first name" type "Kyle" and "FOR THE LOVE OF KYLE" should pop up. Click on that, and begin shopping at Pampered Chef. All orders will arrive in time for Christmas so please check it out!
I am in the process of getting confirmation for a fundraiser at the BJ's Brewhouse in Westminster. We hope to celebrate Kyle's 13th birthday there on December 1st. If it is approved we will ask everyone to join us there that day for a meal and 15% of your food total will be donated to Denise and the kids. As of now Save The Date and I will let you know when it is set in stone.

Recap:
New Account Name, no more A Cure For Kyle.

All donations can be made payable to:
Kyle Lindgren Memorial Fund
First Bank North

Mail your donations to:
Denise Lindgren
1100 Inverness St.
Broomfield, CO 80020

Fundraisers:
1. Pampered Chef Party Nov. 19th show up at Denise's or shop online.
2. Save The Date - unconfirmed dinner at BJ's Brewhouse in Westminster for Kyle's birthday Dec. 1st.

Thank you everyone for your continued love and support!
-Jen

Monday, November 9, 2009 8:24 PM CST

Sunday, October 4, 2009 2:31 PM CDT

Almost a full month since I updated, I don't even know where to begin or what to say. I always thought I'd update this site regardless of what the outcome was. Although, I NEVER did believe our outcome would be the loss of Kyle. I sat looking at pictures today and told Ty those exact words. He agreed, we never believed or thought Kyle would have died. My little boy died.

Of course, as others lost their children to cancer, I would think to myself..."if that were me, I'd lay in his bed forever" or "I'd never leave his gravesite" or "I would never be able to carry on without Kyle". Well here I am, I am carrying on but I can tell you this, it is the hardest thing I have had to endure yet. Life without Kyle is so terribly difficult and heartbreaking. Memories are always flooding my head, and I wish I could say they were happy memories yet they seem to be the most recent ones. His battle to live, his struggle to breathe, the loss of his life in PICU at Denver Children's Hospital.

I don't lay in his bed but often straighten it up after Striker has rolled around in it, or Riley has rested in it while watching television. His room is getting used. Riley uses his laptop now, watches his television and lays in his bed. Striker props up on his bed and gazes out the window, usually looking for the squirrels who have become accustomed to teasing him each and every morning.

I visit Kyle's room often. At times, I do smell his presence (that PICU smell I often talk about). I know he is in there when the "smell" lingers around. It is then that I talk to him. I tell him how much I miss him, how hard life is without him, and how I wish I could just touch him one more time.

When I pass a photo of Kyle, you will see me kiss his face each and every time. Sometimes a small smile will come across my face, yet I'm still at the point where you will most likely find a tear leaving the corner of my eye. My heart is broken, yet I continue to wake each day and I manage to get through it. I won't tell you the thought of not carrying on hadn't crossed my mind initially. I think that's normal, completely, 100 percent normal. I must admit that I am lost. I don't know how to carry on without him. I had plans, my plans were to take care of Kyle. To get him through this life that had been given to him, those were my plans. And on that sad day in July, my plans were forced to change. Now, I have no plans. I have none and don't know how to make them. The only thing I wanted to do was raise my 3 children to the best of my ability. To protect them, love them, and care for them. Now I feel confused and empty inside. I don't know where to go, what to do, or how to feel.

I do realize I still have 2 other children who need me, thus the reason I continue to breathe each and every day. Although, I went to a neighborhood gathering last weekend when someone asked me how many children I have. I froze and gave Ted the look of a lost soul, I didn't know how to respond as my eyes pleaded him for help. I had no idea what to say as tears filled my eyes. Ted quickly took over and said, "three, she has three children." The woman looked at me like I was crazy, "how could she not know how many kids she has!" I then explained to her about my hesitation and the loss of Kyle this summer. Phew...it's those day to day things, each and every single day it's something. It could be a small something or a big something but there is always something that will bring tears to my eyes, and sometimes just bring me to my knees all together.

We visit his grave often. I love to see the beautiful flowers and gifts you are all leaving for my little boy. It warms my heart to know others are visiting him when I can't or don't. Riley places some decorative pumpkins out there today (I hope they don't blow away). We saw another grave that was decorated cute so now we have a few more ideas (a scarecrow is one). We also agreed when we go to the pumpkin patch, we will get Kyle his own pumpkin and bring it to him. Oh the memories of him at the pumpkin patch and painting his pumpkin each year. Halloween is one of our favorites, it's a definite event that the kids and I always participate in with so much happiness.

Ty is now involved in a grief counseling group at his high school. I didn't realize others lost their siblings and parents this summer too. However, a friend of his had a sibling commit suicide so they are in the group together. He is doing pretty good, and like me...he has his moments of breakdowns as well. He visits Kyle often!

Riley still bottles her feelings and emotions up however she did resume life a little bit. She is better about storms although she still cries with the wind. She also started going back to one friends home just after the 2 month anniversary of Kyle's passing. I wish she would talk more yet whenever I bring up Kyle, she will quickly change the subject. I know just being in his room brings her closer to him. They were pretty close as well, she too cared for him and watched him struggle in the end.

Thanks to those that continue to love, support and pray for us as we learn to deal with this heartwrenching time in our lives. Thank you to those that continue to send financial donations to me. Jen and I continue to discuss a future fundraiser to help us pay for a headstone for Kyle.

I had a vision for what type of headstone I wanted for Kyle but Ty pooped on it and said "Kyle would hate it" (I think he is right). I don't think we can engrave a photo of Will Ferrell on it either so we are back to square one. I wanted to have one picked out by the time the snow covered up his site, however I am told it will take months before it's complete. Hmpf! Of course, there isn't a HUGE rush because of finances and I want it to be perfect anyway! It will definetly have his photo and a vase on it.

We are hoping to head back to Missouri for Thanksgiving week to spend it with my brothers and their families. As the holidays (Halloween, Thanksgiving, Kyle's birthday, and Christmas) approach, I know things will be very difficult for us to deal with alone. Thanks DaveC for giving us gas cards to make that trip once again come November.

For those I haven't really talked with, please know I read everything that comes my way. I'm just not ready...for a quick moment, I think I'm ready and then just as quickly it all goes away and I want to collapse at the thought. My life is forever changed...right now I'm simply just learning how to breathe again!

Denise

Sunday, September 6, 2009 10:51 AM CDT

I have a story to share with you as it goes to show that not only is mommy grieving day in and day out...the siblings here are too. Riley still has her HUGE fear of rain and storms so last night she stayed with my parents rather than attend a car show with Ted, his boys, Ty and I (mind you it never did rain). We ate, walked around the streets of Golden and admired many cool cars. The boys were all thrilled when they saw a huge lime green hummer at McDonalds. The hood has The Incredible Hulk painted on it and it became even that much "cooler" when they found out that it belonged to a Denver Nuggets player, Anthony Carter. Ted's little boy, Jack, was just star struck to meet the baseketball player.

We walked back to Ted's "high school sweetheart" (1969 Camaro) and all piled in. Everyone had seemed to have a really good time. Kyle even sat with us at Sonic for dinner. We noticed as we sat in the grass to eat, that right by Ty was a perfectly placed feather sticking straight up from the ground. I told him, "look Kyle is eating with us too!" We all smiled and looked at the feather.

After we returned home, Riley went straight to bed. I decided I'd head up to Ted's to hang out with him for a little bit. I went downstairs to tell Tyler I was going to see Ted for a little bit and his room was empty, I looked into his office area and that too was empty. "Hmmmm that's strange"....I looked in his bathroom, lights were off and empty. I went upstairs and looked in that bathroom, once again empty. Went back downstairs and thought maybe somehow I might have missed him. Where would he have gone at 11 pm on a Saturday night without telling me. "Did he actually sneak out of the house, and how often does he do this?" I then grabbed my cell phone and called him. I could tell the second he answered that he was not OK...Tyler was crying his eyes out and had been for a little bit. I asked where he was and he told me between gasps that he was at Kyle's grave. My heart sank...I hurt for Tyler too. I asked if he was OK and he said, "yes, I just really miss him!" I held back some tears and said, "me too baby. Are you talking to him?" He said, "yes" and I said, "please tell him I said "hi""! I asked if he wanted me to come sit with him but he said "no"! I do know that Tyler likes to grieve alone and will seek me out when he wants someone. I gave him his space to grieve and hurt...yet reminded him that I know how he is feeling. He walked home a short time later and passed out.

This morning he crawled into bed with me. We miss Kyle so much. Death is so terribly final here on Earth. We long to touch him, even for just one more moment. I want to whisper in his ear, feel his soft skin, rub his head and feel his hair between my fingers. I want to "kiss his face off" and lay my head on his chest. Please God, just for one more moment...!

Another odd story to share. You see Ted and I live a short 12 houses apart from one another so many people know "of" me here. After my divorce and the sale of the marital home, the kids and I found this house to rent in town that we just love. Needless to say, Ted and I went to high school together and he too was divorced with two amazing little boys, Jack and TJ. We reconnected after Kyle's bone marrow drive (no we didn't date in high school), and we really enjoy hanging out. He has been one of my "rocks" during this entire ordeal and I am forever grateful to have had him by my side. Anyway, Saturday night he was over and had a story to share with me.

He was outside Saturday afternoon when his neighbors came over to his house. They appeared afraid to talk to him about something yet after Ted reassured them that it was OK to say whatever they needed to, the wife started to talk. Apparently, they went to a thrift store in Boulder and were looking for winter coats for their two children. They found a coat that they really liked and brought it home. Once at home (13 houses away from me), she had opened the pocket and there inside was a lift ticket to Eldora Ski resort. As she looked at the ticket further, she saw the name "Kyle Ray Lindgren" and next to that "Age 11". I haven't seen the ticket yet, I could not figure out which coat that would be. Ted had told her that he was certain that I hadn't gotten rid of ANY of Kyle's things but he was also sure that it was my Kyle's coat.

Of course, when Ted told me this story...I couldn't figure out which coat it was. I thought the story was so amazing that Kyle's coat made it so close to home. Ed moved to Eldora and I know the winter before he got sick again, when he was 11, he had taken Riley and Kyle to Eldora Ski School. Ed must have given that coat away and did not check the pockets. I wonder how hard it will be to see that little boy up the street running around in Kyle's jacket this winter. Funny enough, I asked Ted..."I wonder if I can smell it!?!?" I wander around this house like a dog looking for it's food, nose in the air, sniffing around for any traces of my baby boy! The only thing I can truly still smell him on is his ugly hospital slippers. Which break my heart as I remember slipping those flimzy little things onto his feet so we can take a stroll around the BMT unit, we had to get him stronger so we could finally come home...gosh I hate cancer!

Denise

Tuesday, September 1, 2009 10:21 AM CDT

No, it's not your eyes, the funeral slide show is blurry. I did not take photos at the funeral, those are photos others tooks. The bummer is I cannot get them right. I copied them off Snapfish and this is what I got...hmpf! Patience as I work on that for you all, the pictures say it all. It was an AMAZING service and burial of my wonderful little boy. I miss him, there isn't an hour that goes by that I don't think of Kyle. I not only lost my son, I lost my best friend...my side kick! I cry every day for my loss, for the loss of Tyler and Rileys brother and all the emptiness we feel.

I often think of him and wish that I could have traded places with him. I would have had that breathing tube shoved down my esophogus for him. I would have struggled to take each and every breath for him to only live. I would have jumped into that cold hospital bed and lay there swollen with air and cold to the touch only for Kyle to play on his laptop and giggle at funny movies. I would have taken every single needle poke and blood draw for him to have another change to recite every line from Step Brothers until we all laugh. I would have wore every scar and every bruise across my entire body for Kyle to ride his scooter with a smile plastered across his beautiful face. And I certainly would have layed my body into that beautiful white casket for Kyle to only be alive today!

Every thought, every dream, and every single vision I have is of Kyle. I know he is in a better place, I know he is pain free, laughing and playing like he should have been here on Earth. I am comforted to know that God did have a plan for my little boy and that it just no longer included me. Some days I wish that I could join Kyle, I feel "left behind" in this uncertain, unpredictable, unforgiving place to fend for myself now. I know Ty and Riley need me, I see that each and every single day...yet I cannot help but sometimes wish that I could be with Kyle. Although he may no longer need me, I sure the heck need him...more than I ever dreamed possible.

So, enough of my tears for now. Today is September 1st, I know that means different things to each of you however to me it means September is Childhood Cancer Awareness Month. If you haven't yet, join Team Unite to become part of a unified voice against childhood cancer: www.teamunite.net

There are fliers that you can print to distribute or display to help raise awareness on their website. The flyer lists ways you can help this month in the fight against childhood cancer.

No family should EVER have to bury their child due to this disgusting disease. No parent should have to grieve the loss of their baby because of cancer. Nobody should watch their child fight for their life day in and day out when their only wish is to giggle, play, and hug their loved ones. Please, help raise awareness to this heart shattering disease they call childhood cancer!

Denise

Sunday, August 30, 2009 11:31 AM CDT

I just spent the last hour looking over information for the month of September. As many of you know, the entire month of September is Childhood Cancer Awareness month. So many of us are frustrated at the lack of attention it seems to get due to other "more public" cancers however, we MUST get the word out that children are dying from this each and every day. Families are torn apart and struggling with a new diagnosis of childhood cancer at alarming rates. Innocent children are fighting day in and day out for their lives due to many different forms of cancer. And as we know all too well, families are burying their babies each and every day due to cancer. We have to find a cure, we have to raise awareness, we have to put a stop to this!

I just went to the website I recently added and ordered gold ribbon hats for myself and my kiddos to help raise awareness in September. Check out the website and see what you can do to help the cause! I'm anxious to receive our hats in honor of Kyle, and we will wear them with pride! I also printed out the flyers and plan to leave them around town this month in hopes to help raise awareness. Please do the same! We must get the word out...

Denise

Sunday, August 23, 2009 3:36 PM CDT

I just returned from Kyle's grave. It is so quiet and peaceful there. It's a warm day here and his resting place is so beautiful. You can see the beautiful Rocky Mountains from it and there are beautiful flowers and trees. It's a relatively new cemetary yet it is quiet, peaceful and serene. I still can't believe that I see Kyle Ray Lindgren on his green marker sign. I often wonder what type of headstone I'd like to get him. I keep telling myself that I will choose one before winter time. He has many flowers and trinkets there.

Today, I sat and cried as I talked to Kyle about life and his death. I miss him more than I ever dreamed possible. I feel lost, depressed, and a part of me is empty. I tell him I'm sorry I couldn't save him. I tell him that I am glad he is no longer in immense pain as I know he was at the end of his journey. I just wanted to fix him and I couldn't, it was out of my control. I beg him to give me strength to carry on in this life, without him by my side physicallly. I do feel him each and every day, his arm propped over my shoulder and his breathe against my hair. I see his smile and my heart just melts, oh how I miss my boy.

Thursday, after I got the kids to school...I crawled back into bed and cried all day. I only was out long enough to pick them back up. Jen and Susie came to my rescue around dinner time however. That day I layed there wishing Kyle could have taken me with him. I couldn't function, I was hurting. I did a better job Friday and Saturday I suppose. I just know this is so much harder than I thought it ever would be. I miss him. I do often feel as though he is in the house, just in another room...yet the times I enter his room, it's empty. I still try desperately to smell him. This morning Riley came to me and said she smells him. I asked her if she said, "hi" and she said she did.

I hope you all continue to share your Kyle stories with me. I am amazed at how much he continues to touch you all. I received an amazing photo of one his classmates drawing his name in the sand surrounded by a heart. I want to frame those photos! I love the stories of how he enters your lives and touches you. They warm my heart.

I was working on doing another photobucket slideshow of the funeral. It was a beautiful service and the balloon release was so touching. I didn't take photos and I have two sets now from others. One set isn't showing up full size so I'm getting a little frustrated, it will come.

Riley is still struggling with anxiety. She missed school Friday because of it. I did set up some counseling for her next week. I hope it helps her to understand a little better that life will be OK for her.

Ty is doing rather well actually. I don't know if he bottles things up or not, we do talk about Kyle. He often cries when I take him to the gravesite. We've certainly gotten so much closer this past month.

Thank you all for the continued love and support you've showen us during this difficult time. I know we have a long, diffuclt road ahead of us. I don't know how to handle it, I guess I shouldn't expect to know. I do know this, I think I just suffered the greatest loss a mother could ever have to experience!

- Denise

Tuesday, August 18, 2009 3:08 PM MTN

Exactly one month ago at this time, I was in the PICU, laying my head on Kyle's chest...sprawled over his body, wishing I could hear his heart beat. I layed there thinking that once they take my baby boy away, I will never hold his hand again or rest my head against his chest ever again. His body was starting to get cold but I didn't care, I pulled the blanket up over his chest and up to his chin. I was attempting to take in what had just happened while I waited for our nurse to come remove all of the tubes from his skinny, bruised, scarred, and now lifeless body. I didn't want them to take him away so I could just sit with Kyle a little longer.

The social worker had just left the room, leaving behind a red packet of information for families who have lost their child. I remember her first question to me, not 15 mintues after he passed away, "have you thought about a burial or cremation?" I looked at her puzzled and shocked that she was asking me this question, "ummm, didn't think I would have to. Yes, I plan on burying my son!"

I remember doctors coming in to ask me if I would want them to biopsy Kyle's lungs...not just once, but three times! "No...I would love to be able to help other families who cross this bridge in the future...but no. I would never be able to live with myself if you found out it was something that could have been treated! I'm sorry but my answer is no!" I knew in my mind that for 9 and a half years, we HAVE already helped out many other families.

Jen quickly chimed in. "no, just leave Kyle alone...he's been poked and proded for far too long, just let him finally rest!" And with that, the questions to biopsy my sons lungs finally ceased.

We continued to sit in the room with Kyle. My mom, Jen, Susie, Carrie, and Lynn. The nurse came with her bucket and adhesive remover as she gently washed up Kyle as I had requested. I watched every move they made as I broken heartedly looked at his beaten and battered body. My baby will no longer be in pain. I kissed him over and over until the nurse finally told me it was time for them to take him. I knew it was, and it was so hard to walk out of that room one month ago...yet I did have a calm over me knowing that he wasn't in there anymore. He's spirit, his soul, his livlihood was now with me and in me. I knew that from that day forward, I would have one heck of a guardian angel. One month ago today, my little boy earned his angel wings!

Tonight, I am going to take Riley to her back to school night and then take the kids to dinner. Tomorrow, they start school once again and it will be a very trying year for all of us as we struggle to live without Kyle.

Thank you for the continued love, support, donations, gifts, cards, etc. I especially love the Kyle stories I have been receiving. Gosh, they make me smile to read them and know that Kyle continues to touch you all. I still yearn for him to come to me, and I'm sure he will when it's time. Until then, I continue to kiss his pictures, touch his "stuff", smell for traces of him, and lay on his bed talking to him.

We will be OK but right now, we are not and that's OK too!

Denise

Sunday, August 16, 2009 5:30 PM CDT

Well, I am nearing the one month mark since Kyle has passed away. It's not getting easier by any means. I've cried more this past week than I did the previous two. I'm realizing he isn't coming back and I'm dying inside. My heart is so terribly broken and as I stand in my kitchen and let the tears fall from my cheeks, I just beg and plead to go back in time and fix him. Why can't we just go back and fix him, this wasn't supposed to happen. Why? Why? Why? Kyle was my life, my heart and soul, my everything. I miss him more than I've ever missed anything in my entire life. I need him!

I've spent most of today crying. I want him back! I walk around the house taking deep breaths through my nose hoping to catch his smell. I enter his room and fall to my knees as I see the room that I promised to bring him home too. How many times were we so close to just coming home? Why couldn't I have given him one more visit at home, the only place he wanted to ever be? His new bed, his laptop sits on his desk, his teddy bears on his pillow, his clothes hanging the way we left them. He just wanted to come home! I feel as though I disappointed him, let him down. It's my job as his mommy to protect him and I couldn't, God knows I tried...but I just couldn't save him.

I know the night I had that dream of him on the beach, telling me he was in pain, "the worst pain I've ever been in" and "it hurts so bad mommy!" that night, he left me. I knew when I entered the PICU that morning, went straight to his bed, held his hand and whispered in his ear..."hey baby it's mommy, I love you!' and he didn't respond, that he had left me that night. I knew it! I felt it! And I feared it! His body held on a few more days, just long enough for Riley to celebrate her 9th birthday.

Even though the morning of the 18th, I had to make that horrible decision that it was time to let him go...I knew his soul had already left! I feel him and he talks to me, sweet whispers that I have to stand silent enough to hear what he is telling me.

While in Missouri, my nephew (Dalton) had wanted an IPod. His MP3 player broke after the funeral so he wanted to use his money to buy an IPod. We went to WalMart and I met him over at the electronics section. He was just having the clerk ring up some Sony gadget when I stopped him to ask why he wasn't getting an IPod. "I only have $73.00 and they are $150." I said, "well don't buy that thing, you should get an IPod!" The clerk stopped ringing him up and I turned around to face the IPods. I could feel everyone staring at me (Jen, my neice Bailey, the clerk, Dalton and another sales person) yet I was focused on the case. I kept looking at the IPods when suddenly tears came streaming down my cheeks, I turned to face everyone and said..."you can have Kyle's IPod." I knew Kyle wanted him to have it. It just sits on his desk now and I look at it everyday, waiting for Kyle to come back and use it...only this time, it hit me that he isn't coming back to use it. Dalton asked me if I was sure and as I continued to cry I told him, "Kyle just whispered to me that it was. It was his idea! But you have to take care of it cause Kyle took good care of his things!" He promised me that he would and as I walked through WalMart with the realization that once again my baby isn't coming back to use his IPod, I told Dalton I'd ship it to him Monday.

It's the small things that I often say bring me to my knees. The reminders that Kyle and I had plans, plans for the future. He had promised me that when I got old he would take care of me and I could live with him, "after all mom, you spent all of these years taking care of me!" What about those plans that we made? Who will take care of me now?

I remember worrying about pretransplant when we had to weigh the infertility option, do we want to attempt to retrieve and save sperm for Kyle? Do we want to give him the option to have kids later? Forget about the "future kids" what about just giving Kyle the opportunity to grow up? I never thought he'd die...call me naive, call me silly! Kyle had a talent for pulling out of every situation thrown his way, no matter how difficult or scary - Kyle beat it, so why now? Why couldn't he do that this time too?

I have so much guilt inside of me, so much hurt and pain. I feel lost, broken, and sad. I feel like I have let him down, like I couldn't protect him and that was my job. Why can't we just go back and fix this??? Get it right cause this wasn't supposed to happen! It may have been God's plan but it sure wasn't mine!

I found this while in Missouri, it's a beautiful ceramic plaque with blue butterflies on it. I knew when I read it...that I had to share it with you and hang it in his room! Keep flying high Kyle! I miss you more than I ever imagined possible...

I'm Still With You

Please don't grieve now that I've left your side
There's a peaceful place where I now reside

My life on Earth is gone it's true
But always know I'm still with you

The joys I've had, the love-filled days
The happy moments, in many countless ways

Friendships so special, happiness and sorrows
Make memories last and bring sunshine tomorrows

God called me sooner and though why, we don't know
There's a peace in knowing it was my time to go

When the winds gently blow and the sun shines through
Remember I'm free and still with you!

Tuesday, August 11, 2009 9:30 AM CDT

Hello from Pleasant Hope, Missouri...

The drive out here was OK, although I can say that now since we drove on Sunday...arrived safely...and we are now relaxing a bit. We brought Striker and Jazz with us. They did awesome and most of the time, we forgot they were in the truck.

It has been determined that little Riley will be getting some couseling upon our arrival home. I remind myself that as a 40 year old woman, I struggle to grieve and wrap my head around what happened a few short weeks ago, so how do I expect a 9 year old to process what has happened to her and her family.

She not only refuses to leave the house (we had to drag her to the vehicle to leave) but she has developed and incredible fear of rain, thunder, lightening, darkness, being alone...etc! She's clearly not herself and I want to get everything processed in a healthy manner for her.

I am hoping this week will help her overcome some of her anxiety and fear, I worry about her!

And of course, upon our arrival, it rained and thundered ALL DAY yesterday...today looks sunny!

I have been working on the thank you cards, they turned out cute and are difficult to believe. We stopped and saw Kyle on our way out, our first trip without him...although he is present in our hearts and minds, I sure wanted to watch him tool around on the 4 Wheelers with a smile plastered across his face! Ty took me on the 4 Wheeler last night and I laughed so hard. I was laughing and screaming, I realized I don't know the last time I did that! It felt good!

Thanks for the continued thoughts, prayers, and contributions to our family as we continue on without my best friend and hero!

Denise

Friday, August 7, 2009 10:01 AM CDT

I'm beginning to think that journaling again will help me during this difficult time. I lay in bed awake thinking about how it helps my mind and heart so here I am. I know I should do this more often as so many of you have battled right along side of us, cheered us on, and welcomed Kyle and my family into your hearts. I often relate it to a novel, where I read the entire book in two night, get attached to each character, and then become sad that my book is over and wonder what each person is doing now! Have I ever told you that I'm not a good person to read novels because of my emotional attachment to people - LOL!?

Ty is in Missouri with my mom. Riley, Jen and I are driving out on Sunday to join them. I'm guessing we will stay for the week yet we are playing it by ear. I'm also trying to decide if I should take Stiker and Jasmine (the dogs) with us.

This week has been so very hard for me emotionally. Last night, Jen and I sat on the couch and cried together as we shared our emotional moments this week. I look at the CCKMA picture plastered on the side of my fridge and I get so angry. I remember that day, I felt in my heart we would come out of this together. I remember promising him we could do this and we will. I used to cherish promises and now I feel as though I've failed, not only myself but my amazing sweet boy Kyle.

And as I cleaned this house, I'd often run across things from our life at Children's. His hand written notes to me kill me, the tears instantly flow extreme amounts. It's not the single tear that drips from my eye and you can simply wipe away...it's the hard core crying and shaking as sadness rips through every inch of my body. I miss him, I miss him so darn much. I miss his smell, his touch, his laughter, his hair, his skin and gosh how I miss the hugs from the worlds best hug giver!

I think about his hugs and I remember helping his frail body in and out of the shower each and every day. He's get out of the shower and he would hurt, he would be cold, and I'd wrap him in those little tiny white hosptial towels as he tried to stand alone for a few short moments. He'd then lean into me and we'd just hug...I'd kiss his soft head and we'd cherish that very moment of being able to stand and hug! His arms wrapped around me was the greatest place on Earth. I'd give anything to have those moments back!

I lay in bed in the middle of the night last night, and think to myself, "OK the joke is over, I now see what life would be like without Kyle. I don't like it, can I have him back please!" I yearn for a rewind button...take me back in time I beg of You!

I visit Kyle's gravesite often. I smile when I see the gifts, flowers, and love that surrounds him. Jen brought over another awesome stone saying for his grave that we will place before we head out of town. I ran into Kelsey's mom at the cemetary. Kelsey was a 13 year old girl from our old neighborhood that went missing at the time Kyle relapsed in October. They searched and searched for her, they had been hoping she simply ran away, they distributed missing person flyers all over the city, took out an ad in the local paper begging her to return...only to find out her boyfriend took her life and left her in a ditch in the Broadlands. We talked at the cemetary and shared a few tears. I told her I had walked by Kelsey days before and asked her to look for Kyle. I think Dottie and I will meet sometime soon to grieve a bit together. Two totally different circumstances yet the same sad end result, the loss of our babies!

I have begun working on the thank you cards, they turned out amazing! I'm sad that I don't have some of your addresses as in the mist of everything, I didn't keep them all. I may have to seek some of you out to ensure you get a beautiful card.

I have so much to do before this trip so I must get moving along! Thank you to everyone for everything...I need you all, probably more now than ever. Even if it means simply praying for myself and my kids during this terribly difficult time!

Much love and thanks -

Denise

Monday, August 3, 2009 10:40 AM CDT

How are we doing? Hmmm...Tyler is doing OK really. He is going to Missouri with my mom tomorrow for some rest and relaxing with the cousins, Aunts and Uncles. He starts school on the 18th of August and will be starting his junior year. He has had a bad week with his father. They continue to fight over Striker, which seems crazy to me. We let my ex-husband borrow the dog after Kyle's funeral services so that he could take him up to Steamboat for the weekend and he refused to return him to Ty. The battle has since been resolved, we have Striker back at home...swollen, bloody wound and all (who knows what happened to him, poor puppy). Ty is happy to have him back though and we cleaned up his face and he is resting (the dog that is).

Riley is doing alright too. She was broken from sleeping with me but has returned to my bed. At night, we lay and talk a little about Kyle. She has told me she doesn't like to do that often because it makes her sad. She and I cleaned my closet out and were thrilled when we found the cancer Build-A-Bear from years ago. You push it's hand and it has Riley and Kyle's voice recorded, "we love you mommy!" Awwww...I get to hear his voice!!!

Kyle's gravesite looks beautiful although I must confess it's so terribly strange sitting upon the newly replaced sod and seeing the name plate, "Kyle Ray Lindgren". I am still shocked and my heart races at the whole concept. Kyle always pulled himself out of jams, how could it be that he wasn't able to this time?! I can't fathom the fact that my son lay underground in his little CCKMA shirt, his Bronco hat, his XBOX controller, Stepbrothers DVD, letters, favorite blanket, and favorite stuffed animal from his toddler years, "AH AH"! I go to his room and I smell him often, I know he is in there at those times. His laptop is set back up on his desk and his bed lay made and empty. How in the world did this craziness happen?

It's the small things that trigger the tears for me. Ted and I saw my neighbors having a garage sale the other day and he pointed out a Razor scooter for sale. Oh how the tears swelled in my eyes as I said, "Kyle has scooters in my garage!" And then I thought of the joy he has across his face as he road his electric scooter up and down the street, not a care in the world and the wind blowing through his beach blonde hair. Each time he would pass me, he'd wave and say, "Hi mommy!" And I would sit and worry that he would hit a bump in the road and take a tumble (only once did that happen)!

Although we feel Kyle here with us at all times, I feel terribly lost. I yearn for him to come rest his hand on my shoulder while I type and ask, "what ya doin'?" I sometimes find myself wishing that I could even lay with him longer at the hospital, holding his hand, and telling him how proud I am to be his mommy, and that I am so lucky to have him in my life.

I continue to tuck him in each night as I did the past 12 and a half years. I close his blinds as he crawls into his bed, I walk over, kiss his face, stroke his hair with my hand and smile, "I love you baby boy!" I go to the door, turn off the lights, smile again and say, "night, sweet dreams, love you, see ya in the morning!" and shut the door. I still smell him, that scent of the hospital PICU, the smell that came from every pore of his body as he lay there on a vent. I know when he is in his room because of that very identifiable smell. It is then that I say, "hi Kyle, I know you are here, and gosh how I miss you!"

I'm doing OK. I find myself trying to keep busy, which seems to be easy to do as I continue to deal with financial grief during this difficult time. I won't go into details here as this is not the place, but I sure have thought about writing a whole 'nother book on that one...control and after divorce!

I also want to thank all of you for the continued love and support the kids and I have been given. The numerous cards and contributions have been overwhelming for us. My parents have paid for the funeral and I anticipate paying them what I can in the coming weeks. I have started looking at headstones as well and have a few in mind that I really like.

Thank you for the food and gift cards as well. I'm sort of a lost soul right now, trying to find our "new normal" and still having a few Kyle "triggers" each and every day! Sometimes I remember to eat, and sometimes...well one meal a day is what I have settled for.

I did order some beautiful and amazing thank you cards that are on their way to my mailbox. I can't wait to see how they turned out, and certainly look for them in your mailbox in the coming week or two as well.

With that, Riley and I are going to head to my mom's house to swim and relax. Michelle (Amanda's mom) and Jayden (Amanda's brother) are going to meet us over there.

I'm sorry if I've been unable to reach out to those that have reached for me right now. I'm struggling...I know I will regroup myself and get back on my feet, it's just going to take some time. How much time? I have no idea!

Denise

Thursday, July 30, 2009 11:11 PM CDT

Hmmmm...I know you all continue to check each day for something from me, maybe anything from me would be good. We are doing OK I suppose. I am lost! I cannot believe the rollercoaster of feeling and emotions I can experience in just one hour...I can be mad, shocked, sad, angry, happy, depressed, frustrated, and alone in such a short time.

I haven't really been able to sleep well. I keep having terrible dreams that wake me, and then I want to stay awake for over an hour until I'm sure the dream has left me and I won't pick up where it left off.

I know there are stages of grieving, and I just told Jen that I probably need to find a book to read (suggestions welcome) becauase I have no idea what is "normal" given this horrible situation. I have so much guilt upon me and yet I KNOW I did everything I could to save Kyle.

The funeral services and burial were beautiful. I am so thankful to have so much love and support from my amazing family, wonderful friends and awesome community. You all certainly are holding me up right now...you and my two beautiful children, Ty and Riley.

Someday, I will share the events of Kyle's passing. This I know...it wasn't peaceful or beautiful or any of those things I've read about. It was the most horrible day of my life and it haunts me over and over again. I want that memory to go away and all of the wonderful times to we shared to take over and erase that. I'm not sure that's possible.

Thank you for all of the contributions, sympathy cards, emails, guestbook entries, facebook notes, gifts, phone calls and text messages. I get everything, I just am having a hard time responding, writing and sometimes even thinking.

I visit Kyle's grave daily, sometimes to clean the area up or to place new flowers on it. I am in shock that I stand there at all...I remember Dr. Q telling me that kids "never come off the vent" and I thought to myself, "ha, Kyle will show you!" He always pulled himself out of horrible situations and yet not this time, it breaks my heart and I feel as though I may have failed him in some way.

I miss him...I miss him terribly. The only thing that keeps me going is the mere fact that I now know that he is no longer fighting to live and he is free of pain from stupid cancer and all that it entails.

I just wanted to shoot out a quick note of thanks, and yes...I will continue to journal and share the ups and downs of surviving the loss of Kyle. I am so proud to have been his mommy and so proud to know that he touched so many lives in his short life.

Off to snuggle with Riley and pray for some rest...

Denise

I received this today and wanted to share it as well:

"Cancer Moms"
I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven�t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran, bald heads
Are always parts of our conversations,
As well as roid rage, tears, and meltdowns�
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you,
With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day.
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep.
Make up , hair styling, skirts are words of the past.
We have become addicted to texting,
hospital, clinic, home, wherever�
We talk sometimes at all hours of the night,
We know we can count on someone to be up.
Then for one of us, the world stops.
She has to walk away, broken. The job is over, but the fight is on.
Remember, I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win , sometimes we lose,
But never are we defeated.
We are not nurses
We are not doctors,
We are cancer moms�

Sunday, July 26, 2009 9:03 PM CDT

Oh how I miss my baby boy...! This is what I read at his very beautiful funeral on Friday:

"I want to thank each and every person here for coming out today to pay tribute to my beautiful and amazing son, I am so proud to be his mom. I knew when we went to Rundus Funeral Home on Monday that that facility would not be large enough to accommodate those that have been touched by Kyle in some way, with or without ever actually meeting him. I know he has touched so many lives, millions of lives and probably more than I could EVER begin to comprehend.

I also told some of you that I was planning on standing up here today to talk and you couldn�t quite understand how I could do that. I got replies such as, �you�re brave� or �I couldn�t do that� but I will tell you this, I know in my heart that Kyle wanted me to speak today and I said, �OK baby, if you want me to do this, you better give me the strength to do it!�

You see, I am not a �superwoman� as I often read about myself. Not a hero nor amazing, I am a single mom of three amazing and beautiful children who has learned so many things about herself through out our journey with childhood cancer. My children teach me each and every single day what really matters the most in life. And I can stand before you today and tell you that it isn�t about driving fancy cars, wearing expensive clothing, or worrying about material possessions. It�s that each and every single night, I can tuck my children safely into their own beds, �kiss their faces off� as I like to say, crawl into my own bed and think to myself, �wow, that was a good day, and gosh how I love my children.�

Love. Wow did Kyle teach me about love. Such a powerful word that can create such a tremendous feeling yet we are often so afraid to say, �I love you!� Those three simple words, such wonderful words, feel good words and yet words we take for granted or fear saying because of what someone else might think of us if we do say them.

Why is it that we can �love� certain flavors of ice cream? Or we can �love� that song or �love� that color yet we can�t say we �love� each other? Such a powerful four letter word that can touch someone�s heart at any given moment and yet it�s so hard to say. Why, because it makes a vulnerable? We have to understand, there are no second chances in life, no guarantees that tomorrow will be there. Something so many of us tend to take for granted and sometimes realize before it�s too late. Kyle has taught me to love, and to love with all of my heart.

He has taught me that we have to live each day, each and every single day to the fullest for tomorrow may never come. Kyle was known for that smile of his and his love for life. Boy did his smile light up the room; he had a smile that filled his face each and every single day of his life. He took each day as it was given to him and he had the most positive and amazing attitude. This is the same child that endured so much physical pain and hurt over and over again in his short life. Kyle had every single reason in the world to complain and yet failed to do so. We joked with him the day of his passing that we wish just once he would have said a bad word. One of the nurses said, �Surely he has said a bad word at some point in time?� Everyone in the room at the same time shook their heads and said, �no way! Not Kyle� She said again, �OK Tyler when mom wasn�t around?� Ty again shook his head and said, �Nope!� We often wished he would have while enduring so much pain because honestly sometimes it just makes ya feel better.

Kyle has taught me that to live with no regrets. My gosh, life is way too short and it�s so crazy how quickly it passes you by. We have to make the best of it, enjoy it and for goodness sakes stop exerting so much time and energy on worry, fear and resentment, it all burns up way too much energy that I would much rather spend on loving and living. Let things go because you can�t change them or make them go away. Just be sure you live your own life to the fullest and the best that YOU can each and every day, with no regrets, no doubts, and no what-ifs. Tomorrow is not promised to any of us, live in the moment .

I could go on and on for hours and maybe even days about all of the amazing things that Kyle has taught me, yet I can say this�I am so lucky to have been his mom. I am the luckiest person in the world. Kyle had a heart of gold, a love for life, a care for others; he was sensitive, giving, loving, loyal, faithful, trusting, strong, brave, determined, smart, and witty. He was quiet if you didn�t know him but wait a few minutes and some of the funniest things would come out of his mouth. Most of the times it was something he just blurted out and sometimes it was a line from his favorite movies.

Standing here, I can tell you�I was lucky to be his mom, I am so proud of my baby boy. He has touched the lives of so many people in his short time here on Earth. He has left a lasting impression and I know in my heart, he is not done here as he will continue to use me to make a BIG difference. While I certainly had my own plans for him here with me in this life, God has bigger plans for him now. You just wait; we have not seen the last of Kyle.

We prayed for a miracle for Kyle, boy did we pray for weeks, months and years, �please heal Kyle, and give us this miracle�. We all begged God to heal Kyle here on Earth and it was on Saturday, July 18th of 2009 that I realized, the true miracle as I held his warm soft hand, the true miracle was being HIS mom for those 12 years, 7 months and 18 days. What a true gift from God Kyle was.

Baby boy, I love you, not a day will go by for the rest of my life that I won�t think about you. For I realized all of those years that I held your hand to comfort you�you, my love, were also comforting me. You, Kyle Lindgren are the true definition of a hero! Fly high baby!"

Monday, July 20, 2009 10:23 PM CDT

The following arrangements have been made for our precious boy, Kyle:

Visitation:

Thursday, July 23rd from 5:00 to 8:00 pm

Rundus Funeral Home
1998 W. 10th Ave
Broomfield, CO 80020.

Funeral:

Friday, July 24th at 10:00 am

Broomfield United Methodist Church
545 W. 10th Ave
Broomfield, CO 80020.

Burial

Friday immediately following the service

Broomfield County Commons on Sheridan Blvd

Family and friends are invited to return to the Church after the burial for lunch as we all share wonderful stories about our amazing Kyle, give lots of hugs and shed many tears.

In lieu of flowers and/or plants the family is asking financial donations be made to:

A Cure For Kyle
1100 Inverness St
Broomfield, CO 80020

The local paper, The Broomfield Enterprise, will also be running a story about Kyle's journey on Thursday.

Questions can be directed to Jennifer Jones at jenjoturtle@yahoo.com.

Thank you so much for helping us get through this so very difficult time...

Saturday, July 18, 2009 8:06 PM CDT

My sweet and amazing baby boy passed away today at 1:07 pm this afternoon. I am so proud to have been his mommy!

More soon as I grieve such a tremendous lost today...

Denise

Thursday, July 16, 2009 11:26 AM CDT

Yesterday, I was called out of PICU by a very special and amazing little 11 year old girl. Her eyes have a sparkle and her voice is so soft and sweet. She was in a little red hospital wagon as her momma came with her. She lights up the room, she warms your heart. She has the strength and determination of a true hero and I am proud to have her in my life as it is through this horrible thing called cancer that I have been blessed to meet Amanda Peebles.

Amanda wanted to pray for Kyle. She had wanted me to come, lay my hands on her special angel her grandma gave her, and listen to her prayer for Kyle. "Dear God, please heal Kyle and let him walk out of the ICU very soon, AMEN!" We all opened our eyes, she layed her frail little hand on my shoulder and told me that Kyle will be OK. She then said to me, "Dr. Q doesn't know anything. Look at me he told me a number of times that I might not be OK and here I am. Don't listen to Dr. Q, he doesn't know anything...this is between God and Kyle!" Such wise words from a special little girl. She then proceeded to give me her angel pin that she wears each and every day. She said, "right now, Kyle and you need this more than I do!" I immediately put it on my shirt and there it stays!

Please add Amanda to your prayers as well. I've mentioned her over and over. She is also from our hometown. She came in with aplastic anemia last year. Endured two cord blood transplants and is now faced with battling lymphoma from her cord blood transplant. www.carepages.com mandabear.

Kyle continues to stay on the vent, honestly...it appears nothing is changing. His medications have been upped to keep him comfortable and pain free. He did get his 7th shot of Enbrel yesterday. I sit in the room, hold his soft warm hands, and kiss his face off! I love kissing him...whispering that I love him. I asked him this morning if he and God were playing video games while discussing what should happen next.

I have to be honest that I am afaid as his sisters birthday approaches tomorrow. The docs and nurses know this and hope to not "rock the boat" to ensure Rileys birthday comes and goes without, well you know what I mean and I don't want to type it....!!!

I have received beautiful notes, cards and emails...and to all of you, I read each and every one although I can't respond right now. If you choose to email me, please put "Kyle" in the subject so I do not delete it. My sweet pal Natalie...thank you for the inspirational emails last night. You are an amazing writer and I know your words come straight from your heart. I did tell Kyle that he is your hero...

I have to leave with this poem on Taylor Jones website as Kyle is upset and I must go hold his hand and comfort him:

"I have always been a skeptic, but today Lord hear my prayer.
There are two special Angels here on Earth that need to know you care.
Please today my special day grant me just one wish.
Please come down from the clouds and give Tay and Kyle a kiss.
A kiss that brings them healing and lets them run and play
and be a normal child and start a brand new day!"

Keep praying for that miracle...please!

Denise

Wednesday, July 15, 2009 11:23 AM CDT

Wow is this going to be a hard update...! Last night after dinner, Dr Q was waiting for me. Not a good sign at the late hours when your bone marrow transplant doc is waiting for you.

Jen, Susie, my mom, Ty and Riley were all here last night. We had pizza and drinks out in the courtyard for dinner. Jen and Susie came for a visit and were going to take Ty home to sleep. I knew that Dr. Q wanted to talk to me so I drug the adults over with me.

Deep breath...Dr. Q's eyes were filled with tears as he talked to me. He asked me about signing a DNR on Kyle. The tube to the vent is leaking in his airways, they want to replace it yet feel Kyle will not survive the procedure. They didn't want to do it last night nor did they want to have to do it as an emergency so they want to wait. Last I knew, they were talking about trying to do it today. There is a huge risk and I will probably not have my child afterwards. He feels it would be cruel and unusal punishment if I were to ask the doctors to pump on his chest should his heart fail. They feel with the amount of medications he is on, his heart is on the brink of failure as it is. Without hesitation, I did say that I was ok with a DNR should his heart fail. Dr. Q feels that in the next 24 to 48 hours, it is a strong chance that Kyle will earn his little angel wings.

I didn't cry until after he left and I had to pull Ty and Riley aside and explain to them why we were all in tears and what was told to me. I held Ty for a long time as he shook and cried. He is truly broken. He went to Kyle's bedside, held his hand, and layed his head on Kyle's as he broke down. I gave him a moment to talk to his little brother, I gave him a moment to cry....oh it was tearing me apart to see.

I finally walked over and held him (forgive me for typos as the tears are clouding my eyes). We both talked to Kyle and continued to tell him how much we love him. Tyler and I cannot imagine a life without Kyle, can't even begin to imagine it!

Jen, Susie, Tyler, Riley and I all went to the motorhome to sleep as a group. My mom stayed in the room with Kyle last night, she is now in the motorhome sleeping or at least trying to. Rounds are going on right now, I chose not to listen but Jen and Susie are out there now. My heart is broken...I cannot see nor imagine a life without Kyle!

I awoke this morning after a dream I had. We were at the ocean, so many random friends and family were there. Friends from high school (Deb and Gretchen) were there, I remember them specifically. We were all swimming in the ocean, but not Kyle. Kyle was sick. In my dream we kept saying his cancer was back yet he looked just like he does now...laying in this PICU bed. He wasn't in sight in my dream for quite some time we just all knew he was sick. Suddenly, huge waves started coming in and we all swam back to the beach in fear of them. As we all left the beach, people were going to stand in a line for lunch. As people were leaving the beach, I found myself looking for Kyle in a panic. I found him laying down a ways on the beach, he was on a beach towel, just laying there he. He looked just as he does today, puffy and not really like my sweet boy that I recall a short 9 months ago. He looked like he layed throught he waves, residue of sand was strewed upon his body in the cracks of his arms and his neck. He hadn't moved through the waves, he couldn't. I fell upon him and told him I need to move him, I didn't want the waves pulling him in. He then told me, "I am in so much pain mommy, it hurts, it hurts really bad!" I started grabbing his towel and things around him, I kept saying, "I have to get you out of here but I can't carry you! I have to get help Kyle!"

So I ran, I ran frantically to get Debbie (I remembered she was a life guard). I found her in line for breakfast and asked her for help. We ran down the beach looking for Kyle but he was gone. He wasn't on his sand covered beach towel. Where was he? Oh my gosh, I lost him! I looked into the ocean and there he was, swimming away from me...his legs were kicking away. My heart sank as Deb and I jumped in to save him and it was then that I woke up in the motorhome with tears rolling down my cheeks.

As tears continue to fall down my swollen eyes, I am broken. I cannot imagine life without Kyle. I feel like he has so much to offer, so much to do here. Yet I was also told by a pastor that he might have so much to do with God.

I am angry. I am angry that this little boy fought through that transplant. He engrafted 100 percent. He fought through so much pain and hurt. He battled every obstacle thrown his way. He is strong, he is sweet and he is amazing. There is no other Kyle...and I am so proud to be his mother. Kyle has been a true gift from God!

Rounds have finished, they are not going to replace the tube. They upped his versad and dilaudid to ensure he is comfortable. I just stroke his hair, kiss his face over and over and tell him how much I love him and that I know he loves me too. I often wonder what he is thinking, I wonder if he is scared. I know he wants to live...I know he wants to go home and play video games. He wants to sleep in his new bed and hug his mommy. Have I told you all he gives the worldest best hugs? He loves me...our bond is one in a million.

I cannot stop crying...I can't see through the tears. I haven't given up, I want you all to know that!!! I'm not naive to the severity of what is going on, I am well aware of what this outcome might be. I can see in everyones eyes around here that they fear my son will not survive. The outpouring of love for Kyle is amazing. It warms me to know that they truly love my little boy and care. Our nurse yesterday would touch his photo that hangs outside his door each time she walked into his room. I feel how much Kyle has touched so many lives. Honestly, I think he is tired...I can see he is tired but I know he wants to live and it ticks me off!

I could go on and on but feel I need to get some breakfast and continue to whisper to my little boy that I love him with all of my heart and soul...and that will never, ever go away!

- Denise

Tuesday, July 14, 2009 8:22 PM CDT

Kyle continues to keep everyone on their toes around here. There is no rest, no relaxing, no lunch breaks...this boy is not happy unless someone is doing something to him, for him or on him.

Yesterday, we had another scare. The team had decided to shut off the vent and bag him as they try to retrieve more out of his lungs. They had barely begun the process, his blood pressure was 140 over 90 and had been hanging there after the holistic healing lady had paid him a visit. In a matter of two minutes, his stats took a huge nose dive and as Jen and I stared at the monitor...it wasn't stopping.

I kept looking at Jen telling her "you better not cry" and "don't you cry". Respiratory was in here, a sweet nurse named Kim who had just met Kyle, and the fellows. His stats kept dropping as we stared and stared at the monitor. I kept thinking to myself, "it's not time buddy, it's not time!" When his blood pressure hit 50 over 30, I looked at Jen and said, "if he hits 29, I am going to barf!" Luckily for all of us, he didn't.

Today was another busy day. The holistic woman came back and spent another 1/2 hour with him. I truly believe she makes a difference, even if it's for a short while. He seems to mellow out and relax. She told me today that she had a vision of Kyle early this morning of him playing soccer. I told her he did play soccer when he was younger and he was quite good at it. She will return on Thursday.

I reminded myself the other day that, "oh my gosh Riley's birthday is Friday." Boy, that one snuck up on me. I had not done a thing for her and started to feel pretty sad. I hoped online and ordered her some things and was praying it would arrive by the 17th. I did just get a confirmation that it shipped, phew! I'm also trying to plan an inpromptu get together for her. I'm just now thinking about birthday parties and cakes...yikes!

I often forget that life continues on while we are in here. Sometimes I find myself pulling away from the "normal" as to not depress myself any further. I am doing very well considering all that is happening. I'm not sure how...God must be carrying me!

I hope you all continue to pray for my sweet boy as he continues to battle here in PICU. He's so strong and amazing. I just keep holding on to a turn for the better. I have visions of him sitting up and playing his laptop and calling us all "buttholes" again. Oh how I yearn for the day!

So as you pray for Kyle, I've gotten very specific in praying for "complete healing of Kyle, here on Earth!"
Pray with me!!!!

Denise

Sunday, July 12, 2009 11:16 PM CDT

Why am I surprised every single time we have one step forward and ten steps back? I should know the drill by now right? Yet...each time it tears me up and sends me into a HUGE tailspin. I feel like I am suffocating, like I can't breathe and I am gasping for air. So let me rewind for you all.

Kyle was doing pretty well on the regular vent. We were so happy to see his eyes open and his nod in response to our many questions. His hands were getting stronger and his lungs were looking clearer...AMEN, thank you for the tremendous amount prayers.

Saturday afternoon, Kyle's oxygen levels were on the decline, he couldn't get enough oxygen moving in his lungs. The nurses, doctors and respiratory therapists would come in and bag him in attempt to suction all the crud, this mystery junk, out of his lungs. They were pleased with the amount of yuck they were getting from him. Later that afternoon, they worked on him for a long time getting "plugs" out of him. However, this time...his lungs couldn't recouperate from all of their work.

Kyle couldn't get over 80 on his oxygen for hours. They started to question if he was fighting the vent a little bit, however his afternoon xray looked terrible. I could no longer count ribs, I could no longer see any normal spots...everything was cloudy in his lungs, and soon coudy in my head. My knees just caved in and my heart rate increased dramatically. "Don't cry now", I kept telling myself. We were all on pins and needles.

The doctors decided that they would try to put him back under sedation and see if he could recover without fighting the vent. Well Mr. Fighting Kyle did NOT want to go back to sleep. He fought with everything he had. The doctors kept ordering more bolus' of sedations, more drugs, more medications, more bags of this and that and the entire time Kyle was fighting it. His eyes would pop open with every breath yet I could tell he wasn't truly awake. His hands would both twitch like he was questioning what they were trying to do to him. My heart was breaking inside, I wanted to throw up, I wanted to run, I wanted to cry, gosh it was killing me to see him fight sedation so terribly.

We were in PICU lockdown, every morning and every night from 6:45 to 7:45 you cannot leave the room or enter due to rounds. It was 7 pm Saturday night...I couldn't run, I just stood by him and rubbed his feet like he always wants me to do. I couldn't cry, I wanted to throw up...I kept watching the time as my baby fought with everything in him to stay awake. The doctors were amazed at the amount of drugs they gave him to finally sedate him. I about collapsed every time they ordered more drugs be put in little man. They did get him to "sleep" with propfol right at 7:45 pm.

I left the room to sit out in the courtyard here in PICU. I sat with a glass of wine (OK two or three), took in many deep breaths of fresh air, and wondered why in the world this is our life. I felt so much saddness for my other two children. Ty is 16 and living alone in a rental home that I visit once a week to do his laundry, buy his groceries and clean his dishes. Riley is being shuffled around. Kyle is fighting with everything he has to live. And I am simply put..."lost"!

People see me and often say I look "tired" yet I realized, I'm not so much tired...I'm just lost. I have no idea what the future holds for me or my beautiful children. I thought after my divorce that I was heading in such a wonderful direction. I lined up student loans to return to school, I rented a decent home for my children and pets, I was confident and learning to be independent again, I was hopeful...and BAM, all torn away in such a short time. Maybe it's not taken away, maybe it's a detour...the hard part is, we just don't know.

I was told by Dr. Q to expect to be here well into August, not just here...but here in PICU. Where I see not only my own child fight for his life...but so many other children suffer. Some heal, some go home, some go up to another floor to hopefully recover, and some pass away. We are in the end room so I make that long walk down the hall many times a day...worried about each child and family as I pass their fish bowl room, I pray that they will be OK.

Tonight, Kyle is back on the occilator vent. My son is paralyzed and sedated once again. Not only do I not get to hear his sweet voice still...I don't get to feel his hand squeeze mine. I don't get to see his beautiful eyes as I reassure him that I am "right here" over and over again. I am broken, I am sad, I am terrified, and I am lost. There is no other way to explain it!

Please, please continue to pray for my baby boy. He wants to live, this I know!

Denise

Friday, July 10, 2009 3:16 PM CDT

Hi Everyone,
Sorry we didn't update yesteday, I know it's annoying because Denise and I have ranted and raved at people for not updating their sites.

Yesterday the docs decided that they would bag him for a prolonged time and see how he did. They bagged him for about 15 minutes and he was stable, actually better than on the occilator. He transitioned onto the regular ventilator just fine. He looks so much more peaceful.

When they turned the occilator off it was so horribly quiet in the room I think all of our hearts just about stopped. There were 5 doctors, 1 nurse, 2 respitory staff, Denise, Uncle Mike, Nan, Uncle Brandon, Ed, and myself all crammed in Kyle's room. It was awesome and scary.

Kyle has done really well on the vent and his lungs are the tiniest bit clearer. The docs said his xrays will look horrible for some time even though his lungs are healing. Kyle has been able to respond to questions by nodding or shaking his head. Docs are surprised because he has been given meds to paralyize him so he won't fight the machines.

This morning (Friday) the docs decided to drop his paralytic to see how Kyle reacted. The nurse started out really slow so it won't shock his body. We have been reminding Kyle that he is on a med to make him not move (he is also on a amnesia med too). we told Kyle that the docs are going to start taking away that paralytic so he will be able to move more and it might feel weird. He nodded.

Now it has been about 2 hrs since he has been off the paralytic completely. He can wiggle his toes, fingers, raise his eye brows, open his eyes and look around. It has been really nice because the doctors can adjust his ventilator and Kyle can "tell" them if it feels better or worse. He can also "tell" us if he is cold or hurting. It's amazing how much comfort a nod can give you.

We still have a long ways to go to get off the vent and back upstairs to BMT, so please continue to pray and send out all those happy thoughts.
Thank you to all of you that have brought us food, starbucks, adult beverages, and misc. goodies...you have been a blessing. Also,thank you to Becky for making sure Ty is eatting something other than Totinos:)

-Jen

Wednesday, July 8, 2009 1:32 PM CDT

Rounds came and went today. Jen slept with Kyle last night and she said it was a pretty decent night, minus the respiratory girl talking on her phone all night about her sisters crappy husband and what a loser he is...! OK, and she awoke once to a pretty cute doctor standing over her...she didn't seem to have a problem with that one!

Kyle is doing really good today...consider he is sedated, paralyzed, and on a vent, but he is doing good. Jen and Nurse Beth washed his body and hair and Kyle smells wonderful too.

He will get his fifth shot today, c'mon medicine work!!! They are going to attempt to bag him again this afternoon and then probably attempt to put him on a conventional vent, a step in the right direction as well.

My baby has more pokes and prods, tubes and hoses coming out of every inch of his body. I can manage to continue to massage his feet, hold his hand and kiss his soft forehead. I love to stroke his hair and whisper in his warm ears. He is in there...I know he is. I hear him talking to me on occassion, he tells me he is Ok and he is fighting. I know he doesn't want me to give up on him, and I will NEVER give up on him.

Right now my mom just arrived, Mike is helping the nurse turn Kyle and reposition him, Jen is showering, Susie just delivered Starbucks breakfast and coffee, Riley is up in Amanda Peebles room (carepages.com/mandabear) playing with Amanda and waiting for her little brother to come visit.

Thank you for your continued thoughts and prayers, the Starbucks gift cards, the card mailed to our room, the guestbook entries, the love...we are currently in PICU Room 14, and anticipate we will be here for quite awhile.

- Denise

Tuesday, July 7, 2009 9:52 PM CDT

Sorry for the late update...between taking care of Kyle and Riley using my laptop, I don't often get much time. I know how important it is to keep you all updated because you care! I realize I need to update when my cell phone becomes filled with voicemails and text messages.

Today was mostly filled with blood pressure issues. His blood pressure was high and the alarm was ringing from 11 to almost 4. We weren't sure if he was in pain or what was going on. I think our nurse got behind on controlling the pain and had to spend 4 hours catching up.

I was very sad to hear that early this morning he was crying. He had tears and they were being wiped. Too me, he was in pain and that breaks my heart. We do have some amazing nurses here who know and love Kyle. Today, we had someone unfamiliar with him but she sure talked to him non-stop with lots of love.

At one point they turned off the oscillator vent and bagged him to see what he would do. He responded amazingly well, actually did better being bagged than on this vent. It is also their hope that he will be off the oscillator and moved to a conventional vent as early as tomorrow.

Kyle also had another procedure to redo his pic line. The one they placed yesterday hit some scare tissue from his previous two mediports and curled back. The docs didn't like "the curl" and wanted it fixed. My brother Mike (aka Uncle Mike around here), stood in for the procedure and has been amazing. In PICU, all procedures are done right in his room and we are asked to step out. Mike has been a blessing. He is by Kyle's side, he attends rounds, he talks with the doctors and nurses, he asks questions, he has been wonderful.

I have had my mom, my brother Mike, Ty, Riley, Jen, and Susie by my side non-stop and I can't thank them enough. They take turns sleeping with Kyle so I can do my best to try to rest...most nights I can. Thanks Tammy, Lynn, Nikki and Julie for the food, "beverages", desserts, and goodies that have helped us so tremendously down here at Children's. Thanks to everyone who visits, brings goodies, the financial donations, thoughts, prayers, gift cards, and everything. I know without a doubt, I could NEVER do this without you!

We are continuing to march on...you all know the drill, one hour at a time, one minute at a time, one deep breath at a time! Please keep praying...

Denise

Monday, July 6, 2009 12:24 AM CDT

When I close my eyes and start to pray this is what I see each and every time - I am walking along the beach, it's a sunny day and the waves are crashing. I'm not walking where my feet are actually getting wet at all, my toes are melting into the warm sand as it seeps between my each toe with every step. I'm wearing jean capris and they are rolled at the ends and a soft white linen tank top. I feel the warm breeze and the smell is what I often yearn for, the ocean. To my right is Jesus by my side and in His arms, He is carrying my sweet baby boy, Kyle. We aren't talking at all, we are just walking silently along the beach, it's safe...we are safe. Kyle is sleeping of course, he is resting and healing. As we silently walk along the beach...I find myself wondering at what point Jesus will turn to me and either hand me back my son, or if He will turn, let me know it's OK, that Kyle is safe, and continue on without me, Kyle in His arms.

I have this visual every time I pray, every time I rest, every time I close my eyes...!

Yesterday, Kyle's right lung was collapsing and leaking. They put a small drain in to let the air out. Several hours later, it was determined that a larger drain needed to be put in place. So last night we sat in the waiting area at 11 pm as they put a larger drain into his lung. I also signed a consent to do the left side just in case they needed to in the middle of the night. Luckily, as I awoke this morning, they did not need to do that. They are working so hard on Kyle. Kyle is fighting like crazy...he is keeping these people on their toes just as he always does. There is never a dull moment in this place.

Kyle's oxygen requirements are coming down, which is positive. My baby is fighting...it's amazing to see that he is totally sedated and resting, I then approach him, talk to him, kiss him, rub his soft dark hair, and whisper in his ear, "I love you baby" and his heart rate shoots up to 150, blood pressure rises. He hears me...I tell him to continue to sleep and rest, to heal. I know he wants to tell me he loves me, we ALWAYS have this deal where I say "I love you" and he says back "I love you too!" Now, as I know he wants to wake and say he loves me too, I have to say, "I love you baby, and I know you love me too...you don't have to tell me! Just rest and heal!" He often tries to open his eyes while I talk to him, I rub his little head and try to close his eyes back up...he is doing his job, and doing it well!

I am so proud to be his mother. He is a true gift from God!

Thank you to everyone for the thoughts and prayers. I thank you to those who bring us food, come visit Kyle to talk to him and let them know they care, and I thank you all for the hugs and kisses. This is so terriblyl difficult and yet I know it's completely out of my hands!

Continue to pray for my baby boy, for continued strength and healing. Me? I'm a wreck...they are coming to boot me out of the room. They have to adjust the drainage tube...

Denise

Sunday, July 5, 2009 3:43 PM CDT

Just wanted to send a quick update to everyone. Kyle had a very rough night however he is doing better right now. It's no longer taking things one day at a time, it seems to be about one hour at a time at this point (sometimes less than that).

I went up to bed last night after arousing Kyle twice by the sound of my voice. I felt bad as I left to go to bed, he shook his head no and wouldn't go back to rest. I'm wondering if that was part of his rough night. I think I made the mistake in telling him I was "going" to sleep. I now am just telling him that I am here and that he needs to rest and heal.

I tried to stay rested and finally came back to PICU around noon. Thank you Tammy and Pat for bringing Olive Garden to my family for lunch. I also arrived to the news that Kyle scared the heck out of my brother Mike at 4 am. They won't tell me what happened because it's irrelevant at this point cause he is doing well again. My assumption is that we almost lost him early this morning.

Please keep praying for my baby boy...! He is fighting like hell!!!

Denise

Saturday, July 4, 2009 11:39 AM CDT

Happy 4th of July, Kyle's favorite holiday and he is unable to truly enjoy it...that breaks my heart!

One sign that my baby is a BIG, HUGE fighter...I went upstairs to sleep for the night. When I came down this morning for rounds, I came into Kyle's room to kiss him good morning. I kissed his soft warm head, kissed his steroid/chubby cheek, and whisperd "I love you baby, I am so proud of you!" With Jen on his other side, I hear "holy s*&^, his eyes opened!" I pulled my head up and his eyes were indeed open. I continued to talk to him and told him I loved him, I could see him trying to mouth it back to me. I kept telling him to rest and heal, go back to sleep. Jen said, "I don't think that's good!" Kyle ever so slightly shrugged his shoulders in the "I don't know either" way and we got the nurse.

She looked and his blood pressure indeed went up and he woke to be with his mommy. Of course, the nurse said that's good for me but made her job harder. It took awhile to sedate him once again...she said he is on huge sedation now. I teased that I hope they don't kick me out of his room. My baby heard me, he loves me, and he is fighting...this I know!!!

Rounds went pretty well. He will get his next dose of emborol (sp?) today, that is dose 4. My brother Mike sat up with him all night. "They" played video poker and "talked" together. Mike also led us in prayer before they put him on the ventilator. He is a baptist minister and am thankful for that. They had a very good night together, I know Mike is now exhausted. He made a promise to Kyle before he went into sedation that he was not leaving Kyle's side, and he is holding true to his words.

My sister in law Colleen spent an hour alone with him yesterday. She prayed, meditated, and told him stories. She came out and said, "I know when he wakes up from this, he will have some stories to tell!" I laughed and reminded everyone that sitting with Kyle and talking to him doesn't have to be confession. LOL! I just can't wait til he wakes up and does tell me all the stories. I keep thinking he is going to say, "nobody ever shuts up!"

So although he is paralyzed, sedated, and on a ventilator...he can hear us. He needs all of you...please feel free to come down and have some Kyle time if you would like. I want him to know we are all pulling for him. Tell him jokes, tell him stories, remember with him the good times...tell him to fight his little butt off!

We are at the Denver Children's Hospital, on the 3rd floor, PICU. You are most likely not all on the visitor list but they will call me to see if it's Ok for you to visit. They do not let children under 13 in the unit.

I'm going to try to rest some more, I'm afraid to talk with him anymore because I might wake him. I usually sit and touch his legs, he has so much stuff surrounding him that I can no longer lay with him and hold him. I tried to take a nap yesterday upstairs (they have a room for me) and I just couldn't. I have spent the last 4 months straight holding Kyle in my arms, smelling his soft hair, and holding his warm delicate hand...every single time I slept. And I just layed upstairs and cried in the bed, all by myself...hoping and praying that once again, I will be able to rub his soft head, whisper I love him, and fall asleep holding his hand in mine...

Denise

Friday, July 3, 2009 2:34 PM CDT

Day +114 (I think)

Hi everyone, sorry we haven't given an update in a while...It has been a long, hard few days for us here.

Kyle went back down to PICU yesterday. He was struggling to keep his oxygen levels up even though he was on the BiPap all day and night with 100% oxygen blowing at him.

His uncle's Ron and Mike came in from Missouri to visit with him last night, as did Ed and Mark. Nan stayed in the room with him, while Denise and Riley slept upstairs in the sleeproom. During the night and again this morning Kyle's levels dropped again.

My mom and I got here early this morning and things just were not looking good. When I showed up to rounds and the docs insisted that Denise come down because it was time to start making decisions. So I had to make a long walk up to the 7th floor sleeproom to tell Denise it's time to start talking to the doctors about the next step.

During rounds we were told that Kyle has slowly been dropping and it is time to do something else because the BiPap was not working. Our options were to control Kyle's pain and do nothing else, which would leave us with Kyle unconscience and maybe 24-48 hrs. Or give him on a vent to breath for him, which is uncomfortable so he would be kept unconscience and would not be able to speak with the pipe in throat. That option gives him a chance to fight through this, however, there is a huge risk that his lungs could be damaged even more and we could lose him.

After lots of tears from everyone and talking to the respitory docots, picu doctors, and Dr. Q we came to the decision that Kyle is a fighter and we will give him his chance. We had Dr. Q help Denise talkm to Ty and Riley so they can understand what will be happening, that was very hard. We had an hour before they vented him to spend time in the room to talk to him before he no longer can, have Denise's brother Mike lead us in prayer, and explain to him what the doctors are going to do. We all told him that we love him and to fight like hell...he said he wasn't scared.

So here we sit in the Nurse/Dr lounge across from Kyle's room. The vent went in just fine and we are waiting for him to be stablized before we go back in. I guess it takes a lot of tweaking to determine pressures, levels, and what type of vent works best for Kyle. We are all drained and exhausted but we are here to help Kyle fight this.

I never, never, never thought we would be here. It has been the longest 4 months of my life, so I can only imagine what Kyle, Denise, Ty, Riley, and the rest of the family are going through right now. I don't know what to say or do to make anything better, I just know that I am here for all of them. It doesn't seem fair that such a sweet, kind, caring, funny little kid has to go through so much garbage. He has fought one hell of a fight for the last 9 years and we pray to god that he continues to do so.

Thank all of you for your support, prayers, and love....Keep it up 'cause I think we need a miracle.

-Jen

Wednesday, July 1, 2009 6:14 PM CDT

Today, I am a cry baby...I am so over this. I keep asking my son to do more and more and more. As he showered, I apologized because we believed after transplant we would recover and go on with our lives and here we are...four long months later. It's July, we came in March 6th! We've made trips to CT, MRI, xray, surgery, day surgery, clinic, night surgery, PICU, BMT, oncology, back to PICU, more surgery, more PICU, more scans, more tests and heck now we have more shots of "experimental drugs" on random parts of his body. We are going home, we're not going home but to PICU, we are going back upstairs, oh wait, you are going home, not so fast...back to PICU. Approximately 120 days of this.

I am sad...I feel alone, I know you all are here but I feel like this is my burden to carry. I feel like at this point, I am putting everyone out. I'm tired, I'm sick, I'm frustrated and I feel so terribly alone. I know those that come try to help with that, I appreciate that with everything I have...yet this feeling as a single mom, fighting for my son, I feel this is my battle and this is Kyle's battle. We don't know why we drew the "poop" card but we did and now we have to do our best to get out of this mess. I feel depressed, I've asked more of Kyle than I ever dreamed I would have to ask.

He sits here with bi-pap for 3 hours as he tries to play his video games. He has to have shots every Wednesday and Saturday in "hopes" it will resolve the issues in his lungs. The doctors aren't even sure what the heck is going on within him, they just guess and search. While half of America is praying for God to heal my son, who just wants to get the heck out of here and lead a "normal" life, once and for all.

This morning sucked, did you gather that yet? We slept well but had to head to CT to check out his lungs. No improvement but not worse is what I have been told. Yet when we got back to the room...everything went to crap. Yes, I know the past few days that mornings are hard on his oxygen levels but this morning was REALLY hard. They ended up putting him on 100 percent oxygen with the bipap and started tossing around lung biopsy terminology. I cried...I still am crying.

He did get his third shot today. I want that to work...I want it to start working, even though I know the average is 8 doses...whoever said Kyle is average anyway right? Once could only hope it works quicker!

His oxygen requirements are down right now, as usual in the afternoon and evening. He is down to 60 percent on the bipap, four hours on and two hours off. The doctors have stopped rushing in the room and stopped scaring me, they do make random visits to see how he is doing. They seem pleased looking at him, pleased he is eating, overall surprised how good he looks considering all that is happening. I agree...I'm just scared. I'm scared to the core for him. I feel like we are just sitting and waiting for the unknown to happen. I know God has a plan...I have faith and I believe, yet that doesn't take away the pain I feel watching Kyle endure this over and over.

My heart breaks today...it's just one of those days. I have them about once a every few weeks, I feel entitled! I don't want people to think I want their lives to stop just because ours have. I'm just sad we don't get to do the things everyone else seems to be doing. I know, someday...I just don't understand why?

- Denise

Tuesday, June 30, 2009 8:21 PM MTN

Today was a pretty good day for Kyle, although it didn't start out that way. We didn't go to sleep until 2 am due to several little problems. The first was last night when Kyle stood to pee in his urinal and something large and red came out and literally "thunked" into the urinal which I was holding. I looked down and it was a HUGE blood clot. The rest of the evening, each time he stood to pee..."thunk" went another large blood clot or two. It was disgusting but luckily they each came and went without pain for Kyle. Dr. Q did remind us that due to the steroid dosages, that BK virus could flair up...which it has. Luckily today, he is not having any clots. He is having some pain during urination.

Also, late last night, Kyle became sick to his stomach upon almost completing his swallowing of nightly pills. We were not quick enough with the Zofran and out came his NJ tube along with his pepperoni he attempted to eat for dinner. Note to self, pepperoni does not agree with his tummy just yet. Today, he is without a NJ or NG tube.

We did finally fall asleep around 2 am. Woke a few times during the night to potty and took his bipap off around 7 am. Much to my sadness and dislike, Kyle awoke to not only his nasal oxygen up to 6 liters, they also had the face mask blowing oxygen on him. When he woke to have his morning pee, he coughed uncontrollably and his oxygen levels began to destat rapidly. My gut sank...I'm scared!

This morning was tough to watch, I was terribly scared that he was plummeting back down. Respiratory came up and informed us that Kyle will need to use the bi-pap machine more frequently, more like two hours on and one off.

He took an afternoon shower and did great with it. His oxygen levels were doing better with more bi-pap and some movement. We did attempt a walk outside for about 45 minutes. I typically wheel him in the wheelchair, then at some point he will hold my hand and take a walk. I was saddened to see how quickly he became winded and requested his chair back. When we returned to the room, his oxygen requirements again plummeted and we put him back on the bi-pap.

Tonight, his oxygen is still at 5 liters yet he is playing his video games, eating candy and cracking Kyle-like jokes. He has some anxiety about tomorrow as it will be his 3rd dose of the emboro (trial drug). His first injection was in his tummy, second injection was in his right thigh, so I am guessing tomorrows will be in his left thigh. It's so difficult to watch him endure this yet I know it's our only hope.

Riley left tonight to sleep at home. She spent the last week here and I already miss her. She was awesome while here and is terribly concerned about her brother. She does have a playdate tomorrow, I want her to have a good summer. Thanks Jen and Gary for taking Ty to see a movie and to dinner tonight. I appreciate that so much! My heart is breaking that we just can't be a normal little family. Kyle said last night, "I wish we could be a normal family!" And I said, "baby we are a normal family!" His reply was, "a kid with cancer isn't normal" and I said, "first of all, you don't have cancer anymore and second of all, this is our normal!"

I can tell you this, I will spend as many days here that is required of me to leave with my son! I will fight as long as Kyle continues to fight. While it is difficult and painful to do...it is what we must do! I try over and over to explain how this journey has been for us, yet I come up empty. While the world goes on around us, we feel stuck in time...we make no plans, we live from one day to the next and sometimes one hour to the next. We are tired of it, all of us are tired of it...yet for some reason this is our path right now. We didn't choose it, we'd never choose this, yet we will continue on as long as required.

Please pray for our dear Broomfield friends, Amanda and her family. Amanda was leaving in March from transplant when we were arriving. She had to have a transplant due to aplastic anemia. They arrived back here not too long ago, thinking they were battling GVH...they were told today she has developed lymphoma. They will begin chemotherapy tomorrow. My heart is breaking for them...which leaves mom Michelle and I in tears as we struggle to understand any of this nonsense.

Also continue to pray for Taylor and her family. They are back once again with fevers and tummy pain. Thank you Lord for nothing being found in the CT today. Hopefully the doctors can get to the root of it all and send them on their way soon!

As always, please pray for my baby boy to fully heal. We are now approaching 4 months of living here at Children's Hospital...he deserves to get on with his life and enjoy being a 12 year old boy!

Thank you for stopping in...we are in need of rest, so hopefully that will come tonight. Although, I already know with 8 hours of bi-pap and several potty breaks...I might be asking too much for right now!

Denise

Monday, June 29, 2009 2:36 PM CDT

Thanks for checking in on us again today. I wish I could update more often yet I have no idea where my head is at from one minute to the next.

Morning rounds were pretty quick here. I did ask about this trial drug and how quickly we might see some results. I, of course, want immediate results however was told typical results start showing around the 8th dose, and of course they had one child take 16 doeses. I am hoping for the 8th dose which is another three weeks away.

This morning, it seemed his oxygen requirements seemed to be more. He stood to use the potty and another time to get weighed and it took everything out of him. He had coughing fits and destated to around 80. My heart drops each time I see him struggle to catch his breath.

Respiratory came by as well. They found an article that showed the benefits of wearing the bipap for hour increments throughout the day. If he just wears it at night, it's almost like his lungs have to retrain each time because of the length of time between treatments. So now, Kyle agreed to wear the bipap from 11 to 12 and again from 4 to 5, as well as all night long. He's so amazing, his desire to fight continues on.

Thanks to Nurse Mike last night, he not only played Kyle's new XBOX game with him for 2 hours before his shift even started but he brought Terminator 3 for us to watch. He says we are now all caught up so we can watch the new one when it hits the movie theaters. Kyle just loves Mike and was very happy to have him take care of us last night.

Kyle is still dabbling in food, another positive sign. He said his taste buds are starting to come back, as well his full head of dark hair. He does look great...

Thanks Jen for living with us throughout our PICU stay. We so owe you! I keep asking her if she gets fired from her job, if it's just her car payment I have to cover?! I'm not kidding either...her love for Kyle is amazing!

Thank you all for your encouraging words, your research on this IPS/IPD and the trial drug, your thoughts, and many prayers!

- Denise

Sunday, June 28, 2009 7:53 PM CDT

We made the move from PICU to 7th floor again.

After rounds in PICU, it was determined he was OK to move back up to the oncology unit. We arrived around 3 pm. Kyle immediately took a shower and I changed his bedding. I then got him settled back into bed for a head to toe lotion massage. I also got Riley to jump in the shower as well, she's been here a good 4 days with us.

His xrays show small improvement in the left lung, the right is still pretty cloudy. He is on the bipap machine at night, although I think he might benefit if he'd wear it more...he just hates it. He is on TPN again and they started slow NJ feeds again today. He is on steroids still and an antibiotic as well. So far, word is nothing has grown from his biopsy last Sunday. He is still testing positive for CMV as well, therefore he also continues to be on Foscarnet.

He received his second shot of emberol (the trial drug) in his thigh yesterday. I guess I was hoping for it to kick in quickly, maybe it just takes time or at least that's what I keep telling myself. I am still terribly nervous and very scared.

His oxygen requirements are just over 4 still, although that's better than the 9 is was when we went down to PICU.

Good news is Kyle is starting to eat here and there. He has dabbled with pickles, peaches, twix candy bars, doritos, Wendy's spicy chicken sandwich and fries, and now M and M's. I am so happy to see him attempt food.

My mom brought in an XBOX game for Kyle this afternoon so he's been playing it every since. Nurse Mike came in two hours early to watch a movie with Kyle and they ended up playing this game. He also ran to get me a Starbucks before he punched in to take care of Kyle tonight...thanks Mike.

We had some great nurses down in PICU, I am grateful to each and every one of them. It always makes being there just a little more comfortable. Love you guys but don't really want to visit again!

Kyle is thrilled to be back up on the 7th floor. I just pray we stay put and he continues to heal. Please continue to pray for Kyle...he is scheduled for a heart echo tomorrow and will probably continue to have morning xrays. I want this medicine to kick in, I want him to heal. He is amazing...he has done everything expected of him, asked of him, demanded of him...he's fighting hard!

- Denise

Friday, June 26, 2009 6:49 PM CDT

I am going to type a quick update as Kyle is trying to rest but usually wants my full attention when he is awake.

Kyle continues to be on the bipap machine the majority of the time. He does have breaks where he is on the nasal oxygen.

The new drug emerol (sp?) was given yesterday, a shot in his tummy. It should start kiciking in soon, or at least that is our hope. His xrays today showed a little improvement and I will take it. We are really just sitting and waiting in PICU. Waiting for this new drug to work and heal my baby boy...

I am scared. I am a wreck. I am very lost at this moment. The doctors tore my heart out yesterday and I am trying to pick myself back up. I'm trying to stay hopeful and positive but I am terrified! It's hard to update so I am going to leave it at that. He is not worse and actually is a little, tiny bit better!

I am grateful to have so many wonderful people in my life. I am blessed to have such amazing support and love! I don't know what to do, think or feel...I am broken. I drove home for a nap and shower, as I drove I told God that He cannot take my son. I need him here! Not sure if anyone has ever told God what to do, but hey...there is always a first!

Please keep praying, and hoping...! Kyle is a tough boy and has so much more to do here, so much more!

Denise

Wednesday, June 24, 2009 7:56 PM CDT

Day +107...

Hi everyone, it's Jen again. Denise is taking a little break during shift change to go breath. Denise got a talk from the doctors this morning that they are "running out of options" if what they are doing now doesn't work, so it has been a scary day here at Childrens. Today around noon they moved Kyle back down to PICU to watch his lungs more closely. As Denise said yesterday, the doctors think Kyle has IPS, Idiopathic pneumonia syndrome (IPS). The idiopathic means "unknown origin", so it basically means they can't figure out what is causing the lung problems...not a bacteria or fungus. There isn't a ton of information out there on IPS, but we know it IS NOT a good thing to have. It's frustrating as hell that the docs can't tell us anything concrete except lets wait, see, and hope for the best.
Denise did enroll Kyle in the clinical trial for a new medication to treat IPS and he received his first treatment today, but we were told it will take a while for it to have any affect. The docs have also upped his steriods and put him on a BiPap machine. The BiPap forces air deep into your lungs and is the machine people use to fight Sleep Apnea. He is pissed that he has to wear it but we have already seen some results. The pulmunary doctor was surprised to see such a difference in x-rays after just 1hr of BiPap, apparently they don't expect that much change until 24hrs has passed. Denise always says "Kyle gets everything" and my answer has always been "but he ALWAYS gets out of it" and I am sticking to it!
Kyle had a good visit today with Ty, Riley, Pop, and Uncle Brandon. Nan and I are staying tonight with Denise and Kyle. Don't know if Kyle will let Denise go upstairs to get some sleep but we are crossing our fingures as she is wiped out.
Thanks for the prayers and good vibes, keep'em coming 'cause we still have a lot of healing to do.
Trying our best to stay positive in PICU!
-Jen

Tuesday, June 23, 2009 10:03 PM CDT

Day +106...

I can't really type, nor do I want to talk. I'm trying to remain strong and positive. The doctors think Kyle has IPS, Idiopathic pneumonia syndrome (IPS). I am going to sign some papers to enroll him in a COG (Children's Oncology Group) Study tomorrow. They are going to up his steroids and start a new drug tomorrow. We are doing our best to avoid PICU again...I am trying so desperately not to fall apart in front of him. Please continue to pray for Kyle and his lungs to heal...

Denise

Monday, June 22, 2009 7:04 PM CDT

Day +105

Let's see, do you want the bad news, or the bad news today!? Well the bad news is we aren't going home tomorrow. The other bad news is remember when I told you all that this journey is very much one step forward and like ten steps back??? Well we are about 8 steps back right now.

The move went smoothly to Room 712 however Kyle immediately appeared to be heading down hill upon settling in. As he was sleeping, his chest was moving up and down quite a bit, it was clear he was working very hard to breathe. I called the nurse and resident in to take a look. The resident thought maybe it was the way he was positioned chin to chest while he was sleeping. She moved some pillows around to see what would happen.

I was so convinced and neither was nurse Mike at 7 pm when he arrived. What was concerning was his oxygen had went up from 1 liter to 3 liters over hte night Friday night and now he was really working hard to breathe. Mike ordered an xray and my instinct was right there with him.

The xray came back and didn't look good at all. Very surprising since Thursday's xray had looked better. Of course, I also ran into Dr.Q who gave me his thoughts that it's a post transplant lung disease that Kyle might have. Which seems to be very possible because as soon as we reduce his steroids, his lungs have issues.

The next morning, Kyle had another xray and a CT of his chest ordered. The docs were concerned enough to send us to the operating room Sunday afternoon (Father's Day) to have a lung scope done. Mom and I sat and waited for well over an hour for him when they finally came to get us.

Kyle didn't need to stay on the breathing tube, that was a great sign, however we earned a stay in PICU. Not only was Kyle in tears about this, I was as well. We dislike PICU a lot, Kyle was crying he wanted Nurse Mike again that night, and we had plans to watch a movie together in the room. None of which could happen in PICU.

Needless to say, we spent the long night in PICU and returned up to our room around 2 this afternoon. At one point, Kyle was on 5 liters of oxygen but I am working really hard to keep him down to 3 right now. We do still have the threat of being sent back to PICU.

Dr. Q made a quick visit this morning. He told me that so far all tests have come back negative on the broncoscopy. They saw some swelling in the airways, a little bit of blood, yet most of the fluids were clear. So far, good news. I am hoping it's just the fluid from the heart window that was done a few weeks back. Of course, that's really grasping isn't it?

Once we were back in our room, an Echo of his heart was ordered. The tech reassured me there wasn't fluid collecting around the heart again. He did see the fluid around the lungs but said it didn't look too bad to him. I haven't heard the official reading yet.

Shortly after the Echo was done, we were whisked downstairs to switch Kyle's NG tube to an NJ tube. The NJ tube goes further into his body, down to his intestines. This allows the food to bypass the stomach and hopefully will cause less vomiting and nausea for Kyle. It was pretty painful for him to endure, however I have high hopes that it will help with his feedings! This little man needs to plump up a bit.

Finally, Kyle and I were both able to get a shower in. It had been since Saturday morning and we both needed it. He is currently sleeping so peacefully and I figured I better catch up on a few things. I'm not sure we will get to our movie tonight but that's OK too, I am pretty wiped out myself. These last few days have been another whirlwind. We've digested the set back and are ready to keep on swimming forward...one darn day at a time!

Please keep Kyle in your prayers, please pray his lungs can finally heal, his body can heal and we can close this chapter1 Please pray for continued strength as we face these setbacks that frustrate us both terribly.

Thanks for visiting...I'm going to crawl in with Kyle for a little nap!

Denise

Saturday, June 20, 2009 5:44 PM CDT

Ahhhh....today was moving day, so welcome from Room 712. We are out of the BMT unit yet just across from the unit, scrub stations, and sleep room for families. I have to admit, I think I need therapy for this transition. So many rules and restrictions for the past 107 days and now we are free (well sort of). We can eat in the room, we can eat fruits and veggies, we can shower in the room, potty in the room, no more scrubbing in, we have a new view...this is crazy. One down side, no more Wii in the room however we can bring ours from home if we really want it.

It took two wagons full of stuff and then loading up his bed with more stuff to get moved. I had to make a trip from the BMT family kitchen to the onocolgy kitchen as well. I didn't decorate this room as nicely as the last but we don't anticipate staying too long.

I went home last night and had an awesome dinner on my new grill...fresh veggies, fish, steak, baked potato and a glass or two of wine. Ted and I then watched a movie and relaxed. This morning I had a few errands to run, including filling up the kitchen for Ty. I called on my way back in to hear Kyle had a rough night last night, he threw up his NG tube and had tummy pains. When I returned to the hospital, Kyle said he threw up six times. He hasn't done that since I've been here though. He does need to get that darn NG tube put back in soon though.

Please continue to pray for Amanda Peebles (www.carepages.com/mandabear. The MRI results show two viruses EBV and HHV6, which are testing also in the spinal cord and brain. The EBV in the brain has a high mortality rate and they are working desperately to heal her with a few new drugs and some chemotherapy. Amanda is also from Broomfield, has aplastic anemia, and transplanted just prior to Kyle. I know they can get through this, the power of prayer, faith and also believing!

Ty is getting ready to head home for dog duty, Kyle is snoring, and I am going to finish settling us in. I still can't believe I can eat, shower and pee in the room. Maybe I'll gain back some of my lost weight AND maybe I'll shower more than once every two days...

Denise

Friday, June 19, 2009 2:46 PM CDT

Day +101

Well let's see here, good news and not so good news...where shall I start!?

Good news:

We are leaving the BMT unit tomorrow and moving to the regular oncology floor. They need our room and since he is over 100 days, we are out of here. This means no more scrubbing in - however, I will require everyone continue to wash when they come in. We have NO food restrictions, welcome salads, fresh fruits and veggies!!! We even get to eat in our rooms again, shower in our rooms, use the potty in our room...what a treat! Kyle has already requested I bring him fresh organic fruit tomorrow!!

Kyle will also get a 4 hour pass on Sunday to return home, this as long as he is still fever free and pain is managed.

Supposedly, we are still on target to go home Tuesday, June 23 however, I am not holding my breath at all! I think that will be a last minute decision if it does happen. I also think Sunday will be a good indicator if he is truly ready to go home.

Not so good news:

His CMV once again has resurfaced in his blood work. He is on prehydration and Foscarnet to treat it.

His BK virus is rearing it's ugly head, causing lots of pain urinating and the passing of blood.

With all of that, Ty is coming in soon to spend the afternoon and evening with his brother, which allows me a nice 24 hour break at home! My to-do list is growing by the minute. I have two huge tubs of things to bring home with me because I don't want to move them tomorrow to our new room either. Moving does not sound fun after 107 days here, we've accumulated lots! Riley is to spend the weekend with her father so I think I can tackle some things and still enjoy a nice dinner at home tonight! I am looking forward to the down time, once a week is simply not enough!

Please continue to keep Amanda Peebles (our Broomfield transplant friends) in your prayers. Her MRI of her brain showed and unknown "spot". It has not been seen by the doctors here before and they should have some results in the next 24 hours as to what it is. My heart is sad for them! I think you can find them at (you have to register with carepages to visit):

www.carepages.com/mandabear

Thanks for checking in on us, please pray this CMV and BK virus hit the road soon and Kyle can continue to heal. I can't wait to hit Sprouts for fresh fruit for him, and I can't wait to see him eat it!!!

- Denise

Thursday, June 18, 2009 3:14 PM CDT

Welcome to DAY 100

I am so thankful we have made it this far. All of the ups and downs for the past 105 days have driven me to the edge and back numerous times yet we are standing on our two feet today (some a little better than others, sorry Kyle).

The anticipated discharge date (as we've all heard before) is now Tuesday, June 23rd. Of course, we know those can come and go yet we are a little excited anyway. If all goes well, Kyle can also have a four hour home pass on Sunday.

He is off of the pain pump (PCA pump) once again and taking all oral medications. The only thing not oral at this point is the NG tube (feeding tube) however he will be going home on that. Amazingly, he did some serious barfing last night in the shower but the tube managed to stay in this time. Phew! That thing has been a major pain for us, however, he is slowly gaining some weight back so I see the benefits and it's hard to fight that.

Physical therapy has been going very well. We just love Rose our therapist. She has a way of getting Kyle to push forward and has made great strides with him. He is slowly working on step ups so that he can do stairs at home. I still think stairs are a huge challenge at this point but that too will come.

On the down side, Kyle started having painful urination last night. I asked to have a urine culture done so that was sent off last night. It's progressively getting worse and he is passing blood in in urine a little bit again. I'm not sure if it's a BK flair-up or something more. The initial test does say there are red blood cells in the urine and I too see them today. Not good! The results can take 24 to 48 hours and I keep hounding them to check.

This tummy pain is just terrible, it hasn't stopped at all so we are around the clock on two oral pain medications. The newest one added is really causing sleepiness with him so it's hard to balance out. We are also thinking the methadone is causing low blood pressure issues for him. He is currently taking 5 mgs in the morning and night, and 2.5 in the afternoon. I'm hoping by Sunday we can create a good balance of pain control and alertness so he can enjoy some of his time at home.

Thanks Jen and Susie for the Starbucks coffee and yummy breakfast sandwiches this morning, they were delicious. I hope you guys enjoy your vacation and we will see you again on Tuesday! Thanks to Dave Cohen for dropping off some more gas coupons for myself and Jen today. It was awesome finally meeting you and Kyle surely lit up when he heard you offer up some XBOX paraphernalia for him! Thanks mom for coming to get Riley after three days and two nights with us, it was great having that much time with her. Also thanks for bringing in some DVD's to watch as we have run out of all options here! I think we will watch Terminator tonight. Ty is coming in tomorrow afternoon and staying until Saturday afternoon so I can have some much needed time at home. I have a to-do list to tackle in preparations for a possible return home. The last thing is grooming the dogs, which The Dirty Dog thankfully will do on Monday for me.

Please pray for Amanda (our fellow Broomfield transplanter) as they just got some results for her MRI back in. There is apparently a spot that the doctors are not certain as to what it is. Please pray for some good news for them. Also little Taylor Jones is back in (link below), she's having some random fevers and looks like something is brewing for her, pray for them as they will be here until that is resolved.

Thanks for checking in...we are trying so hard to control this belly pain so we can go home. Pray for good urine results, even though with blood and pain...it's obvious something is going on!

In honor of Kyle's 100 day post transplant celebrations, I want to remind you to JOIN THE BONE MARROW REGISTRY online for FREE by June 22nd! It says it takes 30 minutes to order your kit online however Ted did it this morning and said it's more like 15. After filling out the online form, a swab kit will be mailed to you. The swab involves 4 cheek swabs with giant q-tips and mailing it back in. What an amazing opportunity to help save a life!!! You could be that one person that someone is looking for, why not give the gift of life!?

There is also a link on Facebook - Be The Match!

Thanks for checking in, we are so happy to hit marker Day 100!!! I couldn't have made it through this journey without you, your thoughts, your prayers, your generosity...I am forever grateful!

Denise

Wednesday, June 17, 2009 12:49 AM CDT

Day +99

Let's see...I will type this with the best attitude that I can as I am extremely tired of being here!

Yesterday, he had a routine MRI to see how the brain damage is resolving from his siezures. The results came in this morning and it looks better, of course there are still some cloudy areas. Dr. Q did warn us that could take up to 6 months to resolve. They are going to do routine MRI's once a month until all is clear and normal.

We woke this morning to Kyle needing to go potty, as he was getting up...he threw up his formula and NG tube EVERYWHERE. It was a total mess! I felt terrible that he lost another NG tube, those darn things will not stay in. His belly pain is HUGE!!! It is just non-stop and is driving us crazy.

We fell back to sleep an awoke to the Echo tech coming in. I didn't realize we were doing an echo however Nurse Jenny said she heard a "rub" or "murmur" this morning.

Echo results came back normal. Phew!

He is still on the PCA pump but it's really limited and therefore the pain seems that much worse. They are going to try oral pain medications (liquid morphine) when he requests pain medications loads.

His physical therapist Rose is in right now working on back stretches for him. His back is tight and he is complaining. Usually he is laying on a tennis ball in bed!
She's trying to get him to play Wii, however Riley stayed the night and is playing as I type.

We are tired of this place, totally tired of it. It feels never ending and frustrating beyond words.

Todays counts -

WBC - 4.3
HGB - 10.5
PLT - 60,000
ANC - 2838

They are now only drawing labs on Monday, Wednesday and Fridays.

Ty stayed the night the other night and that was great for Kyle's spirits. We went for a nice walk outside and the boys played video games. Ty also sat with Kyle through the MRI. He is very protective of Kyle and did a nice job taking care of him. Riley stayed last night and was also good at taking care of her brother.

Just heard the Rockies are here to visit...I think I better at least get out of my pajamas!

Keep those prayers coming, we want to go home!

Denise

Monday, June 15, 2009 5:42 PM CDT

Day +97

This morning started out with, "Kyle had a little bit of fever early this morning so I just drew cultures and gave him a tylenol," says Nurse Jenny. One big deep breath and then a sigh from mom.

Rounds came just after 11 am. We are still lowering his pain pump to wean him off of that. He is taking his methadone and that helps. His lungs sound good with a little lower rattling. And...that darn fever. "Well you won't be going home this week if he gets another one that's for sure!" straight from the docs mouth. So far, Kyle is cooperating and not getting another one. I do hold my breath each time they come in to check his temperature.

His blood pressure has been pretty low, right now they are running a bolus of fluids through to get that back up. At a rate of 999 mls, I keep waiting for him to wake up and have to pee as I can hear the fluids rushing into him. He's been sleeping most of the day, I too curled up next to him and took a nap for a few hours.

I laughed when Jenny walked in with the bag of fluids, "we doing a quick bolus to increase his blood pressure?" I asked. "Denise, when are you going to become a nurse?" LOL, thats the running questions about here and actually I have thought about it off and on since this 9 year experience. Sometimes I think I could do it and sometimes I want out of here and to get on with our lives. I do know, I have lots more time to think about it!

I don't have counts today...I just know it's day +97...my goodness!!!

Mom and Ty are on their way in with BJ's dinner, YUM! Riley is at her fathers for the night and Jen is tackling some of her to-do's as she is heading out of town on Thursday. The house was cleaned today for our return home and tomorrow the carpets will be cleaned. Wish we were there to enjoy it!

That about wraps it up from here, sweet Taylor and her parents broke free from this place this morning. Kyle still has to shower and walk. And I guess we will continue to pass time.

Thanks for checking in...yup, we are still here in Room 708!

Denise

Sunday, June 14, 2009

Day 96

Happy Flag Day!

All is quiet, went down for xrays first thing this morning to check out his lungs. I didn't think they had changed since Fridays set of xrays. His xrays are the same. His oxygen requirements have increased so they wanted to check things out.

Our goal today is to walk, exercise, sit in the chair, and shower.

Thanks Gina (Taylors mom) for picking up pizza and having dinner with me last night. I'm sorry you guys are back but hopefully it's a short stay. I did enjoy sharing dinner and conversation last night!

Heres to hoping for a quiet day...I did change photos on the transplant slideshow. I'm a little sad I didn't take more photos during our journey!

- Denise

Saturday, June 13, 2009

Day 95

"No molecular evidence of residual host pre-transplantation cells is detectable by PCR in the bone marrow specimens from 06-09-09. This finding is consistent with the prior bone marrow specimen from 04-06-09 indicating continued complete donor cell engraftment." Final result 6/12/09 at 11:47 am

AKA - Kyle is still 100 percent donor cells!!!

Kyle is doing tremendous overall. His surgery site still hurts (I did take a photo of it and will post it soon). His tummy still hurts a lot, he has non-stop belly issues although I do hear that is very common with transplant patients. I just want it to go away...and I'm sure he does too.

Bad news for the day, that darn NG tube was barfed out once again. I'm finding a pattern when we have Nurse Katie, glad she doesn't have this website...LOL!

The tube will be placed again within the hour and he is less than thrilled.

I was home last night and this morning, I had a great time with Riley and we got a lot accomplished. I wasn't sure we would because last night we chose to have dinner and eat s'mores with Ted and the boys rather than get things done. We too need to relax and unwind. However, that did cause her and I to do a lot of running around today. As I left, Jen was mowing the lawn and I stopped to pull some weeds, I really do miss yard work. Jen just text me to tell me our stupid lawn mower just broke, she got a few strips in the back yard mowed so it's looking good, oops! Guess we better start looking for lawn mower sales. Ty get's home today I think, I'm sure he will be happy it's broken as that's his job.

I'm still praying we can break free by Thursday, even though I said I'd stop posting and hoping for home. I figure I will put it out there to the universe, that whole "The Secret" the thing right!?!?

Congratulations to Stephanie and Michael on the birth of their sweet baby girl Addie. I hope they come visit soon as I cannot wait to meet her!

I hope you all have a wonderful weekend...it sure is nice out!

Denise

Friday, June 12, 2009 11:14 AM CDT

Day +94

BE THE MATCH - Join the Registry

Take the first step to become a bone marrow donor � join the registry. It's FREE June 8 � 22. You could be the one to save a life...what an awesome gift, the gift of life!

JOIN THE BONE MARROW REGISTRY HERE

The link above will also help if you have ANY questions regarding cord blood donation. If you are pregnant or someone you know is, please have them look into donating the cord blood. Kyle had a cord blood transplant from a baby in Houston, TX...it was his only chance of survival as we didn't have a donor marrow match. Please share our story.

As for Kyle, he is doing well. He is still pretty sore from his surgery but recovering well. They just whisked us away for follow up xrays with no results yet. We are also going to work on taking the PCA (pain pump) away again and working on the oral methadone once again.

I am going to escape home today for the night, I have some things to do before the cleaners hit our home on Monday AND I want to see Riley. Ty is still in Missouri but should be returning home soon. Ahhhh, the day we can be together again!

Today's counts:

WBC - 2.1
HGB - 10.5
PLT - 85,000
ANC - 1384

Thanks for the prayers guys...we appreciate everything you do to keep us swimming!

- Denise

Wednesday, June 10, 2009 6:01 PM CDT

Day +92

Hello from Room 708 and once again it feels good. Cardiac Intensive Care is good and of course I would always recommend those that need it, come here...however, we ALWAYS feel better back on our floor.

Last night was LOOOONG as I suspected it would be. They really had a hard time managing Kyle's pain level. I felt like he was in way too much pain, especially knowing we have many options around here. I did know they were busy with a little baby that came via Flight for Life as well. We were up until nearly 1 am with pain and I awoke at 4:15 am to, "please help me mommy!" Kyle was just in terrible pain so I had to hold his hand an comfort him. I then heard him mumbling something about a "deer" and thought either he was delirious or I was. Finally I asked, what are you saying and he repeated back to me, "Dear God, please take my pain away now. Amen!" He just tears me up inside...! This is the first time I heard him initiate the prayers.

We went back to bed around 5 or so and arose again at 7:30 am. Rounds were just finishing and we were told the chest tube would come out soon. Soon was real soon as they came in by 8:30 am, had pulled it out, stitched the hole up, and sent us back to our floor.

I have to admit I was quite shocked by the size of the incision they made on him. It's just under his right breast bone and it's a good 2 and a half to three inches long. Just underneath that very sore, swollen and bruised incision is a hole where the drainage tube came out. My last glance at the drainage container there was just under 300 cc's of fluid. Wow, that's a lot of fluid.

CICU is a wonderful and clean place, nothing but high praises. I think we've hit all areas of this hospital, minus NICU and I think we can cross that off as not happening.

Kyle has been sleeping pretty comfortably all day today. The PCA pump (pain pump) is back on and giving him a basal rate of medications. He is terribly sore and well...he looks like he was in a train wreck. Right now he fell asleep with the XBOX controller in his hand, pressed against his face like he is kissing it, and his head cocked to the right side...so right now, he looks cute.

His oxygen levels are at 3/4 liters right now. His lungs are cloudy once again so we are working on getting them moving with the spirometer. It's hard to take those deep breaths when a garden hose was just pulled from his chest, however, he is trying! As always, Kyle continues to impress me.

He also started developing fevers last night but they appear to be going down and away, phew! He is getting platelets as I type due to his surgery. The docs just want to ensure he is over 75,000 while he heals.

Thank goodness on the going home to do list that we must repeat. The hospital organized a company to come out and clean our home for us as well as have all carpets cleaned. The Wave Car Wash gave us a huge discount on a complete detail of the vehicle Kyle will be riding in, and we are going back to Dirty Dog to have all dogs cleaned and groomed. Next step is to go over all the medications and fill what is new. He currently takes 16 pills in the morning between 9 and 10 am. More pills at 2 pm and then another 16 pills between 9 and 10 pm. YIKES!

Thanks Taylor Jones and mommy Gina for lunch the other day and for Kyle's HUGE jug of pink lemonade. He did have a small glass and two bits of mac and cheese that day! The NG tube is still in (he did throw up last night in CICU however it stayed down for once, phew). He isn't getting any feeds through the tube right now however they did have to resort to shoving some medications down it last night.

Thanks mom for breakfast today as I really needed it and by the way I inhaled it, I think you knew that. Thanks Jen for the HUGE Starbucks, needed that too. Love you both!

Thank you everyone for all of the thoughts and prayers, I'm at a loss on how I feel right now...frustrated doesn't cut it. We should have the preliminary results from the bone marrow biopsy yesterday with final results next week. GULP...! Keep those positive thoughts and prayers rolling!

One last note, the charge nurse last night from CICU said she heard of Kyle through her church in Westminster...that was so awesome to hear that so many have Kyle on your prayer lists, thank you!

One heck of a sleepy mommy and a way sleepy and sore Kyle

Tuesday, June 9, 2009 6:59 PM CDT

Day +91

Hello from Cardiac ICU...what a busy day we have had here at Children's.

8 am we were off to CT for the chest scans. 11 am off to clinic for his bone marrow aspiration and biopsy. Fluids were easily pulled and looked good. Should have a preliminary tomorrow with actual percent donor cells next week. Please pray we are still 100 percent donor cells.

As we were scrubbing back into the bone marrow unit, Dr. Giller caught me and wanted to let me know that cardiac wants Kyle to refrain from eating or drinking (NPO) just in case we can do surgery this afternoon.

Within the hour Kyle was whisked down to the cardiac operating room for his surgery. He was so terribly upset however I was glad it happened quickly. He has so much anxiety that the waiting would have been 10 times worse.

Surgery for a pericardium window was two hours long. They enter through an incision in his chest and put a "window" in the pericardium sac to drain the excess fluids. The surgeon said there was A LOT of fluid and the surgery was certainly necessary. He felt the fluid was definetly affecting his heart function, particularly the right atrium.

We are now sitting in the cardiac ICU for the evening. They left a drain in his chest and I am watching it slowly fill up with bloody fluid. They told me they were pleased the fluid was clear and will have some results in the next week.

Kyle is in TONS of pain right now! We pray this is our last big obstacle before heading home...which is....who knows when. There is a great debate however, I'm staying out of it once again. Just tell me when to pack our crap so we can go.

Please keep Kyle in your prayers as we have so many tests pending right now...positive thoughts, positive energy!

Have to run...

Denise

Monday, June 8, 2009 1:53 PM CDT

+90

The idea of home was so very short lived...just had our first of several tests, the Echo of his heart, and already not such great news. The fluid has reaccumulated around his heart and he is requiring surgery. They plan on cutting a one to two inch incision in his chest and putting a "window" into the fluid sac to enable it to drain. This surgery has a high success rate and will set us back at least 2 to 3 days for recovery. I do not have a surgery date or time yet.

Kyle also threw up his NG tube AGAIN this morning...it needs to be placed again this afternoon. I hear Kytril is a great solution however Denver Children's does not have a contract with that manufacturer therefore we can't get our hands on it! Nice...

Tomorrow is the CT's and bone marrow biopsy...please pray for great news with those set of tests!!!

- Denise

Sunday, June 7, 2009 11:31 PM CDT

Day +89

Thank you to Jen for staying another night with Kyle. It sounds like they had another good night and allowed me quite a bit of time at home again. It was nice to have a real lunch and enjoy myself today.

The NG tube went back in around 6 pm tonight and it went rather smoothly, I wonder if it gets easier the more times they do it. Of course, Katie asked how comfortable I would be doing one at home if I had to. I told her I could do it but am glad we live close enough to get back here if need be. I know I could place it, I'd just prefer not to.

He is back to getting feeds at a rate of 60 mls so we shall see how he handles it. His biggest complaint is that darn tummy ache.

Todays counts:

WBC - 3.0
HGB - 11.6
PLT - 64,000
ANC - 1902

I was walking in the hall a few hours ago and the buzz is certainly "home" around here. The charge nurse said, "heard you guys are going home this week, aren't you so excited?" Now I knew they talked about it last week however we also have nurses that warn you not to get your hopes up, "could be a few weeks too!" Which we totally can relate to as we were going home TWO MONTHS ago as well. The buzz is clearly we are going home this week!

We have things to get done prior to that happening of course, clean the house AGAIN, clean the dogs AGAIN, clean the carpets AGAIN, clean the truck AGAIN, fill all medications AGAIN...! Jen, my mom and I are scrambling to organize the whole process AGAIN. I'm confident we can do this.

Of course, I do have that fear of "oh my gosh, scary!" It reminds me of the first time I had my baby (Ty) and you are getting discharged and they hand you the baby and send you off. I remember thinking, "Seriously? This is mine? What am I going to do with this thing?" It was a very scary time but you learn to fly...and I am confident I will learn to do this on my own.

He will be going home on oxygen of course, that's what scares me the most, ummm hello...we need oxygen to LIVE!

The game plan I got tonight from our night nurse Julie is tomorrow is the Echo to check out his heart. Tuesday will be the CT scan of chest (lungs and tummy) and his bone marrow test to ensure he is 100 percent donor cells. His brain MRI will not be until the 18th.

Please pray for all good news and a one way ticket home...Kyle is doing amazing and looks amazing. I am so proud of the strides Kyle is making and his effort is not going unnoticed. He is ready to go home, he wants to be in his own bed, he wants to recover on his terms...and I know he will. During our visits to PICU, I was scared the fight was out of Kyle, I was scared he was tired and was going to give up...today, he is determined!

Please also pray for our neighbors here in BMT, they just received the news that their 14 year old son, Julians, bone marrow transplant did not take. The family is gathering tonight to tell Julian the devastating news as they battle with what their options are at this point. My heart breaks for them as they have such difficult news to give their oldest son.

Thank you for checking in with us...Kyle continues to heal each and every day!

Denise

Saturday, June 6, 2009 12:52 AM CDT

Day +88 (somehow we were off a day)

Thank you Jen for staying with Kyle last night, I really needed the time. I am/was hoping to go back home tonight for more sleep, and I should, however that mom in me thinks one night was enough. If I were truly smart, I'd go get another night of sleep.

Jen said the night went excellent. I left around 6:30 pm last night and returned at 10 this morning. When I returned, my poor baby was sitting in the chair, puffy cheeked and sad. He had just thrown up his NG tube again, had to take a shower and get his bed changed. His blanket needs to be washed and his hot pack had to be thrown away. He saw me and just cried. I gave him a giant hug...I feel bad for him. I'm not sure what happened there but he's been throwing up ever since. Can't keep his meds down at all. Katie just gave him some ativan in hopes to relax him so we shall see. He looks pretty puffy to me today...I am a bit worried. I hate to see him have to get the NG tube back in as well. It's helping him in so many ways but it's not fun to watch going in...of course, I've certainly seen much worse!

His counts have been dropping:

WBC: yesterday was 3.6 today is 2.7
HGB: yesterday was 10.1 today is 9.4
PLT: yesterday were 59 today are 57
ANC: yesterday was 2473 today is 1717

He simply doesn't look like he is feeling well today. I pray it's just a tough day and that tomorrow will be much better...pray with me!

Denise and barfing Kyle

Friday, June 5, 2009 12:32 AM CDT

Day +86

Oh my gosh am I tired...I am beyond tired and working on dementia. This every hour to two hours up to pee is really taking a toll on me. I'd put him in that category too however he sleeps during the days too...smart boy!

The latest is they are weaning him off the pca pump. They have stopped the constant flow of delodid to his little boy, he now only has the button to push or can request to have a loading dose. They've added a low dose pill of methadone to start him off and help wean the pump away. This is causing more pain than usual right now however I must say he is handling it well.

He had his last infusion of TPN last night and he is now running 60 mls of nutrition through the NG tube. The specialist actually just came in. Their goal is 80 mls of formula with only night feedings for 10 hours. Then he can be free to eat or drink during the days. His appetite is not back so if he needs to, he can drink a Boost or two during the day. Sounds like a good plan.

I talked with Katie (our nurse) this morning a little bit. We are going to ONCE AGAIN go over discharge stuff this weekend. My home has to be deep cleaned AGAIN as well as the vehicle. So far that's all I have gotten out of her. I am certain the air ducts do not have to be done again. We will also have to go over the medications for home. I have a nice NEW bottle of cyclosporin (which caused his seizures and blindness) that I have no use for now. I'm sure I will have to pick up many more before we go home.

Kyle started methadone yesterday and we will probably up that starting Monday. That is his oral pain medication for home. He also started the Zoloft yet we are slowly upping that one as well. Hopefully by Monday we can be on all oral medications. He is battling quite a bit of nausea, gas and belly pain however his bowels are finally moving along.

Dr. Q has reminded me once again that some kids do breeze through transplant and some take the long and hard route. He said Kyle is taking the long and hard route, really?! Who knew? He warned me that Kyle will require well over a year to recover from all of this, yet Dr. Q does continue to give me hope. He won't sugar coat anything and often tells me this is going to be hard and he is a lot of healing to do. I do have faith in Kyle, he is very determined to get better and walk out of here.

I'm hoping to spend some time at home again this weekend. I am reminded that I NEED to attempt to catch up on some rest and sleep because IF we do go home end of next week, it's just me. No doctors, nurses, or spouse will be there to help me through...! I just have to tell Kyle my plan to get out and breathe this weekend...the nurses are awesome and will do everything in their power to ensure me time at home. Katie is his nurse through Sunday during the day and they are requesting Mike have Kyle the next three nights...this will help tremendously!

Thanks Mom for bringing Outback in again last night, it was delicious. I got to see Ty for a little bit again before he heads to Missouri. Thanks Nicole Enderle for the Starbucks this morning...it's tasting great! And a huge thank you to those that continue to send gifts cards and financial donations. I can't mention enough how such donations have allowed me to focus all of my time and energy on Kyle getting well enough to get home without having to worry about the financial end of things. You guys all help me in ways you probably don't even realize, so thank you!!! And I know Kyle would say thank you as well, he needs his mommy here all the time!

With that, enjoy your weekend and thank you for checking in. Please continue to hold us close in your positive thoughts and prayers...we want to go home so bad (91 days here, and still counting)!!!

- Denise

Wednesday, June 3, 2009 10:47 AM CDT

Day +84

Todays counts:

WBC - 3.9 (low)
HGB - 11.3 (low)
PLT - 48,000 (low)
ANC - 2823

Segmented Neutrophils - 72.4 (high)
BUN - 26.6 (high)
Calcium - 8.4 (low)

We had another long night of frequent pee requests and a few poops. I'm not sure how much longer we can go with no real sleep around his place. Even going home for a quick 24 hours is not enough, we are functioning on nothing around here. I think if I slept for a week straight, it still would not be enough.

Kyle's best sleep is when he has a loading dose of pain medications, which then plummet his oxygen and requires the mask next to his face. His tummy hurts, his boy parts hurt from the BK flair up, had a headache this morning, and his lower back is hurting him terribly. I have to pick up a new tennis ball for him to lay on today, he is currently laying on a lotion container wrapped in a wash cloth to help him.

He is terribly skinny, we watch Animal Planet often and he reminds me of those emaciated dogs and horses you often see. Almost every bone protrudes from his little tiny body. He is determined though, I can see he is driven to get better and walk out of here. Each day, he continues to prove to me that he is a fighter...this boy has more fight in him than anyone I have seen, so very proud to be his mom. I've seen things that would have probably driven me to give up and yet Kyle continues to work through each and every obstacle thrown his way. He is truly my hero!

It's almost time for rounds so I will see what they are up to with Kyle. I know they are working on oral pain management and I need to research a little bit. I am no expert but am unsure how I feel about the combination of Zolofot and Methadone. They upped his NG feeding rate and formula last night, they continue Miralax to attempt to empty his tummy, and we need to work on Physical Therapy.

I am heading home again for the day but returning tonight. I have so many "to do's" that just never seem to get done, although how could they when I leave once a week, sometimes twice?! I'm hoping to bring Ry back with me tonight so she can sleep with me here...and I better make sure Ty packs up for his trip to Missouri. I'm so thankful he has my dad in his life, thank you dad! And thanks mom for coming to sit with Kyle today so I can try to get more things done.

With that, I need to get things in order around here so I can head out around noon! Enjoy your day, hug your loved ones, and keep the faith!

Denise

Tuesday, June 2, 2009 2:04 PM CDT

Day +83

Well, the word "home" is abuzz around here. The doctors are setting up a game plan to get us there.

1. Control the pain without the PCA - they are currently working with the chronic pain management team to come up with a long acting pill form that we can go home on.

2. Wean off of the Ativan every 6 hours and add the anti-depressant Zoloft. Not only helps with depression but also with pain management.

3. Wean off the TPN and hopefully only go home with NG feedings during the night and allowing the days to eat and drink at his pleasure.

4. Continue the physical therapy to strengthen his muscles.

With that, we will have testing done on Tuesday of next week and his bone marrow aspiration on Wednesday to ensure he is still 100 percent donor cells!

Today, the so-so news would be that Kyle is going to have the NG tube placed back in within the next few hours. The intake of Boost drinks is just too much for him while he battles the belly pains. He didn't meet the needs required yesterday which caused a huge flair up of the BK virus (bloody pee, painful pee, bladder spasms)! While Kyle is a bit discouraged he also knows it's necessary...he knows he can't keep up drinking to meet his requirements.

We were up a lot last night with the bathroom issues - BK flair ups. This morning it was noted that he was dehydrated from not meeting his feeding needs and therefore it caused the symptoms of the BK to arise. Kyle has been in quite a bit of pain today.

Yesterday, he did great with physical therapy. He walked the halls twice, took his shower standing, sat in the chair and even offered to go to the parent room to watch us eat pizza. He is trying, with every ounce of his being...he is trying!

I was so glad to spend the day with Riley and Ty yesterday. I miss my kiddos terribly. Riley ended up staying the night with me again...she's a great help to Kyle as well, that little motherly instinct kicks in. She went home with Jen today and hopefully will return soon. Ty is off to Missouri with my dad on Friday...and us, well we just want to focus on HOME!

Thanks for stopping in, time to tend to Kyle...sometimes I wish he would just sleep through the pain!

Denise

Monday, June 1, 2009 11:02 AM CDT

Day +82 - I cannot believe it's JUNE!!!

Kyle had to head down for xrays last night, his tummy is just a constant problem. Once again, the results were he is full of poop...no pun intended! We started him on Miralax today, it is our goal to empty the kid out and quickly.

Yesterday was a good day minus that terrible pain, does that appear to be such an oxymoron or what? He showered, got dressed, sat in the chair for an extended period of time, he took a very short walk, and we took a wheelchair ride to the outside world. It appeared nice out however as soon as we stepped outside, the rain drops started. Although Kyle won't admit to how nice it was to be outside, I could see he enjoyed it.

No NG tube yet! I say yet because we are battling it a little bit. He had to drink 4 Boost shakes yesterday to avoid the tube and he did just that. And he did have a bite or two of a banana anyway. His morning Boost has poop medicine in it (Miralax) so hopefully we can get things out of him and he can feel better soon. Pray for poop!

Todays counts:

WBC - 4.5
HGB - 11.2 (received blood yesterday)
PLT - 48,000 (dropping)
ANC - 3505

On a MUCH more serious and sad note, I discovered this morning that Seth Harris earned his angel wings yesterday morning. The VOD was just too much and the special drug friends, family, and complete strangers searched for and finally got was given a too late. Seth was their only child, a 12 year old boy who just endured his transplant a short time ago for his relapsed ALL. My heart aches for them and once again leaves me wondering "why?" Pray for his family during this very difficult time. Fly high Seth Harris!

Denise

Saturday, May 30, 2009 7:49 PM CDT

Day +80

I just returned from a 24 hour home visit this afternoon. Kyle did really well while I was gone. My mom said he finally had numerous trips to the potty and his bellyaches are getting better. Unfortunately, while I was away...he also threw up, which means his NG tube also came out. They called me this afternoon and I could hear him crying in the background because he did not want to have to get a new one in. The nurses said they would wait until I came back before they did it.

They also had a few concerns with the heart monitor and the constant increases in his heart rate. They did an EKG and found everything to be normal. I did talk with Dr. Giller upon my return and he did say one concern is as the steroids decrease that we just have to watch his heart a bit more.

I also returned to have a beg and plea session with the nurses. I didn't realize that the NG tube didn't have to be a "for sure" thing if Kyle could begin to eat or drink on his own. I went to them and begged that if Kyle were to drink a Boost Breeze and continue to do so, could we please not do the NG tube. They agreed that if he could drink and continue to drink the Breeze, that they would forgo it. However, if he stops then the NG tube would have to go back into place. So far, he has finished the entire Breeze one full hour early than they wanted. So for now, no NG tube. I hope he can continue to drink because I know how much he dislikes the tube!

Yesterday before I left, Dr. Q did say that he anticipates us staying until our Day 100. Day 100 is when we will do much of his post transplant testing and scans. We will also find out if he is still 100 percent donor cells. While I am sad that it's another 20 days away, I think we will probably need most of it to get prepared for home. Dr. Q did say he would consider doing Day 100 at Day 95. While it seems like a long time, after being here 85 days now, what's another 20 right??? Now is the time to strengthen Kyle, fatten him back up, and really encourage him that he can and will do this!

Each day is a day of improvements...let's keep them going! The thought of bringing Kyle back home means so much to me. Especially given this journey and the so many obstacles we have endured. I miss home, I miss my kids, the birds chirping, the dogs, the yardwork, the sunshine...yet it's just not the same until Kyle is there with us.

A huge thank you to all of my wonderful friends and family who made my birthday special. Thank you all for the continued love and support...please, keep those prayers flowing for physical and emotional healing for my boy! We can feel them and we can see them....

Denise and Kyle

Thursday, May 28, 2009 2:31 PM CDT

Day +78

Thank you so much for the birthday wishes each and everyone of you...Facebook is full of them, the text messages, phone calls and this guestbook!

My morning started with Ted bringing me a birthday Starbucks coffee and breakfast sandwich. That was an awesome way to start my special day so thanks a bunch!

Kyle had physical therapy again this morning, he did really well but wow does he HATE it. He also has a special boot used to stretch his leg muscles so he wore that for an hour as well. Poor guy! He knows it's to help him walk out these doors in the near future!

He has had constant belly pain, which we assume is still associated with gas and poop. They are giving him Senna to get things moving again. Once again, poor guy! I gave him another foot massage in hopes of getting things moving along for him.

Later, my mom, Jen, Susie, and Riley are coming in so we can have a birthday party. I haven't found out if Kyle is off isolation yet but we should know soon, I want him to have the opportunity to join the party. We can't eat in the rooms so he would have to make it down the hallway to eat with us. Maybe he will even have a bite of cake. Last night he tried an oreo but again it didn't taste good...not sure how an oreo could not taste good but it didn't. I did finish it for him, I thought it tasted great!

Ty can't come in, I just talked to him and he sounds terrible. He thinks its all sinus or allergies but we just can't take that risk at this point. He agreed with me and I will miss him!

Kyle's counts are as follows:

WBC - 5.5 (normal!)
HGB - 11
PLT - 75,000 (still dropping)
ANC - 4532

That's it for now...please keep praying for his belly pain to resolve, he is in so much pain! Thanks again for all of the birthday wishes and well wishes, today is a good day!

Denise the 40 year old ummmm mom!

Wednesday, May 27, 2009 8:42 PM CDT

Day +77 (my goodness)

Kyle was on a regular schedule last night. He was up every hour on the hour. It went like this, Kyle would say, "mommy pee" and I would jump out of bed to grab the urinal. He would pee, I'd push his pain button, set the urinal back down and whisper, "see ya in an hour!" Kyle would whisper back, "ok!" I will take every hour instead of every 15 minutes...that was painful.

He never whimpered or winced with belly pain, all night long, however first thing this morning I heard him call his nurse for a loading dose of medicine.

Thanks mom for bringing in a hot pack for his tummy, that truly seems to help him and it appears this place is still out of them.

Kyle's white count is back in the normal range, which was great news. They also made a few changes in his medications and NG feeds, which appear to be helping.

Kyle also started out doing physical therapy and he sure did a tremendous job. I found out that the more ticked off he got, the better he did. I am very proud of the strides he is making.

After physical therapy, his nurse did another nasal wash on him. It was more rushed than usual because I did make a statement in rounds that I would love for Kyle to be able to leave his room tomorrow so we can have a birthday party for me in the parent room. He is on isolation still with that rhino virus. He tested negative last week and needs to negatives to be taken off of isolation. They wanted to get the test in so we could have a result early afternoon tomorrow...just in case he wants to come to my party!

Kyle then took a short nap before heading to the shower. He did a great job, with my assistance, making it to the shower. He has stood up the last two showers, which is impressive. It also takes all of his energy so he has been sleeping most of the day.

I noticed that his urine output is now at 100 cc's each time and he is speading out of just over an hour now. I can see his bladder lining "shedding" which is allowing more room in his bladder to hold urine (all good things)!

It was music to my ears to hear Dr. Q say that "Kyle is healing"! I too believe he is healing each and every day. It's amazing that after a nice long nap, I still see improvements. Today, we played some Wii games and he also played a little bit of XBOX. He isn't where he was yet it's the little things that make me smile and give me so much hope!

I'm going to catch the second half of the Nuggets game while Kyle continues to sleep...

keep those positive thoughts and prayers coming our way!

Denise and Kyle

Tuesday, May 26, 2009 7:09 PM CDT

Day 76

Today started with physical therapy and xrays of Kyle's belly. His tummy has been hurting quite a bit yet we have been assuming it's gas and restarting the digestive system. Xrays were ordered once again and Kyle was less than pleased to take the field trip.

By the time we returned back to the unit, the docs already had some initial results which were all good. It looks like he is full of gas and poop, none of which surprised me because he pooped three times this morning and has lots of little "toots". The only real relief is the pain pump and lots of hot pads. Unfortunately, the hospital has been out of them since last Friday. I am now making makeshift hot pads with washcloths and "chuck its". Dr. Q said that he is going to inform that hospital that if they can't provide hot pads to the patients that we are allowed to bring our own. If so, I'll have to run out and snatch one up for my little man.

The afternoon is a relatively quiet one for us. He did make an attempt to get on the laptop a short while ago, he actually made it past the sign in screen of WOW...I was pleased, love the baby steps forward. Of course, he passed out a few minutes later yet his desire was still there so I'll take it.

Here's to hoping things continue to move forward for us...please continue to keep us in your thoughts and prayers as Kyle continues to heal and strengthen both physically and emotionally. It breaks my heart to see his frail, little body attempt to just stand up so I can just manage a sheet change, or hear him cry out in pain as the xray tech tries to position him to get a good shot of his belly.

Thanks for stopping in...

Denise and Kyle

Monday, May 25, 2009 1:27 PM CDT

Day 75

Memorial Day - by Michelle R. Christman

As we stand here looking
At the flags upon these graves
Know these flags represent
A few of the true American brave

They fought for their Country
As man has through all of time
Except that these soldiers lying here
Fought for your country and mine

As we all are gathered here
To pay them our respect
Let's pass this word to others
It's what they would expect

I'm sure that they would do it
If it were me or you
To show we did not die in vein
But for the red, white and blue.

Let's pass on to our children
And to those who never knew
What these soldiers died for
It's the least we can do

Let's not forget their families
Great pain they had to bear
Losing a son, father or husband
They need to know we still care

No matter which war was fought
On the day that they died
I stand here looking at these flags
Filled with American pride.

So as the bugler plays out Taps
With its sweet and eerie sound
Pray for these soldiers lying here
In this sacred, hallowed ground.

Take home with you a sense of pride
You were here Memorial Day.
Celebrating the way Americans should
On this solemnest of days.

Thank you to those who continue to serve our country, served our country or died for our country this Memorial Day. Thank you for giving me the freedom that I enjoy today, tomorrow and the next. I am forever grateful to be an American.

Today is a restful day, however the tummy pains are HUGE! Kyle is trying to rest but his digestive system is certainly not cooperating. I don't know when the pains will subside but I sure wish they would give Kyle a break. That is his biggest complaint today.

His bladder continues to shed so very much. I think that thickened lining is shedding as his urinal is often filled with clots of all sorts and colors. He isn't experiencing pain when he does go (which is good). I just pray his tummy heals along with the rest of him, he so deserves a break!

Todays counts are as follows:

WBC - 11 (down again, yippee)
HBG - 10.1 (close to transfusion)
PLT - 90,000

Glucose is at 143 (normal 60 - 105)
BUN is still high at 51.8 (Normal 6 - 17)

BUN is most likely high due to the steroids he is on right now.

I miss my kiddo's today. I feel like after over 80 days in here, it's taking a toll on me, on both of us. We are mentally tired yet still hopeful. Ty and Riley finish school on May 28th (Thursday) and I am hoping they might be able to spend more time with us. It's so hard to get away from here, and for so many reasons. Yet, with school out...I can have the kids here a bit more as well. I miss them!

It's raining out this Memorial Day, I like the rain. I probably wouldn't like it if I were at home trying to do yard work, or bbq, or swim however today as we sit here in Children's for another day, I like the rain!

Please continue to pray for Kyle, for both physical and mental healing!

- Denise

Sunday, May 24, 2009 4:05 PM CDT

Day +74

Today is status quo and we are good with that. His tummy continues to hurt at random times however we believe his entire digestive system is learning to work all over again. It cramps a lot and he has had a few bowel movements. We usually keep a hot pack on it to help with the cramping.

Kyle has been sleeping off and on so far today. He did manage a shower, over 45 minutes sitting in a chair, and a special mommy manicure/pedicure complete with a foot rub. I've been learning a bit here and there about reflexology and his "tummmy" buttons are really messed up. They feel like he has a bag of marbles in them. I rubbed them out a bit, as much as he would let me...then put him back to bed with another loading dose of pain medication.

We are hoping for a quiet and relaxing weekend with more baby steps each day. We see them...!

Today's counts are OK...I'm glad his white blood count continues to decline:

WBC - 13.8
HGB - 10.9 (received blood yesterday morning)
PLT - 94,000 (declined a bit)
ANC - 12,213

A few other counts to share:

Glucose is high at 164 (Normal 60-105)
BUN is also high at 53 (Normal 6-17)

I don't think I like that BUN number and did a little bit of Google research today. Haven't talked with anyone about it yet.

I just finished cleaning the room and wiping everything down with heavy duty antibacterial wipes. Kyle is sleeping pretty heavy although I need to wake him soon to take his afternoon medications. I thought he was on a lot of medications before but oh my gosh...between the belly pains, bladder issues, and brain problems...he is taking so many medications throughtout the day, no wonder his belly is mad and he isn't awake for very long!

Please continue to pray for strength and healing for my baby boy. We sure want to go home sometime in the near future! Also keep 12 year old Seth Harris in your prayers as he just endured a bone marrow transplant for his ALL and is struggling in PICU.

Thanks for stopping in this Memorial Day weekend...who knew we'd still be sitting in Room 708?!?!

- Denise

Saturday, May 23, 2009 10:01 AM CDT

SHOES

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not
theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don�t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

~Author Unknown

Thanks for sharing this in my guestbook Loraine Keck!

Have a wonderful Memorial Weekend...keep Kyle in your thoughts and prayers as we seek comfort and healing!

Denise

Friday, May 22, 2009 6:51 PM CDT

Had to add this urgently for another family:

www.caringbridge.org/visit/sethharris -

"THIS IS A DESPERATE PLEA, PLEASE IF ANYONE KNOWS OF A DRUG THAT HAS BEEN USED SUCCESSFULLY TO TREAT VENO OCCLUSIVE DISEASE PLEASE TEXT MY CELL PHONE WITH THE DRUG NAME (601) 764-7350, I AM SORRY I CANNOT TAKE PHONE CALLS AT THIS TIME, NOT ALLOWED IN ICU UNIT. WE WERE JUST GIVEN THE MOST DEVASTATING NEWS A PARENT WANTS TO HEAR ABOUT THEIR CHILD AND WE DON'T HAVE MUCH TIME TO DO THIS SEARCH, SO PLEASE WE BEG FOR YOUR HELP. PLEASE SAY EXTRA PRAYERS FOR SETH TODAY AND TONIGHT AND TOMORROW FOR THE LAST DRUG THAT OUR FACILITY HAS IN MIND TO USE WILL BE HERE TOMORROW AT NOON TO ADMINISTER AND BEYOND THAT THEY DON'T KNOW WHAT ELSE TO DO BUT KEEP SETH COMFORTABLE.

Yesterday the drug used was: Actose also known as Pioglitazone

Tomorrow he will be administered Protein C

The drug they originally wanted but cannot get their hands on was Defibrotide.

PRAY PLEASE FOR SETH, HE DIDN'T WANT TO GO THROUGH THIS BONE BARROW ROUTE, HIS DAD AND I TALKED HIM INTO THIS AND WE FEEL LIKE WE HAVE TAKEN OUR CHILD'S LIFE FROM HIM WITHOUT HIM HAVING A SAY SO.

Our Thanks and Appreciation,

Seths parents"

I did update Kyle's site this morning, just look at previous journal entries! Thanks...please pray for this family!

Friday, May 22, 2009 12:37 AM CDT

Day +72

Kyle has pretty bad belly pains yesterday. The NG tube had went in Wednesday early afternoon and they started his "formula" up pretty quickly. I think his belly was hurting because it hadn't seen food in two months however we still were sent down for xrays. I'm always nervous for what they might find but glad to get them done. Thank goodness the xrays were all normal so they slowed down the rate of his feedings. His white count was high yesterday again, 24. Not good since we can't find anything. I'm convinced he has soooo much healing going on between his bladder (the BK virus) and his brain damage that his counts are just busy. Dr. Q leans towards something is wrong and we can't find it. I guess we balance one another out.

I had a dream last night that his white count was 14 so when we finally woke for the morning I asked for his counts:

WBC - 17.9
HGB - 11.6
PLT - 113,000
ANC - 16,163

The results of his most recent nasal wash are not fully back yet, preliminary is negative which is good. I was told we'd get the rest back later this afternoon. Again, we are checking on the status of the rhino virus.

Kyle has a therapy boot on his foot as I type. We are trying to give him a stretch and the boot is supposed to be rotated every 20 minutes. The problem is he is finally sleeping so good (even snoring) that I don't want to wake him to switch it. We were up every 15 to 20 minutes all night long, and if I was lucky I would get a half hour to 45 minutes. Dr. Q explained his bladder is smaller than normal because of the thickened lining.

Dr. Q also did an eye test with him this morning, it seems his peripheral vision is still missing. He can see good straight ahead though. He can count from 1 to 10 and back, and he remembers quite a few things. He has an occassional gap that confuses me though. Last night he demanded I put his clothes on him. I tried to explain to him that he has been naked for over three weeks but he just got angry with me. So...I put a hospital gown on him to make him happy, needless to say during his next pee break...it was off again.

He is very sleep deprived and rather depressed right now. I understand that as he has been here over 80 days now. It's one thing after another and he isn't seeing the light at the end of the tunnel. I try to encourage him and give him hope but most of the time he isn't buying it. I used to be able to encourage him with games to play however he is still unable to play them (due to his brain issues, I don't like "damage").

I see baby steps...I really do, yet that doesn't take away from the frustration of it all. We see other kiddo's come and go and yet we still stay. I know others have had it more difficult and sadly too many have lost their babies so I feel as though I have little complain about...sometimes, I just feel like enough is enough, let's get better and get the heck out of here!

Please continue to pray for Kyle...I am hoping for a quiet and healing weekend for him. Good news to Taylor Jones as she is finally heading to her home sweet home, she had her Day +100 tests and she remains in remission!!! Ahhh, the sweet news!

I hope everyone has a wonderful 3 day weekend. Please continue to think of my baby boy...and if you can think of ANYTHING to lift his spirits, that would be great - pass it on!

Denise

Tuesday, May 19, 2009 4:34 PM CDT

Day 69 -

Evening update:

Just finished talking with Dr. Q about the CT and MRI results. MRI wasn't finished however what they did get showed improvement, still has the "clouded white spots" yet they are fading a bit. The good news was no new ones. I was reminded again it will take a long time for his brain to heal and may even be up to a year.

The CT of his lungs shows a HUGE improvement from the 5th down in PICU. Everyone was pleased with that, and also pleased that he has no new issues with those.

His tummy looks pretty good, certainly not typhilitis. His bladder has lots of swelling and irritation - which is more than likely related to the BK virus.

Sinus scan was all clear.

We have not heard back from this mornings Echo however looking at the CT scan, it does appear to be fluid free.

We discussed how pleased we are with his physical therapy however, he is down to 28.2 kg. This is over 10 kg - which is 22 pounds. He is so terribly skinny and has no desire to eat. Dr. Q feels this severe weight loss will cause problems if we don't attempt to fix it now, months of being inpatient and rehabilitiation. It has been decided that tomorrow we will put a NG feeding tube in. While I worry about how he handles it, we have to get nutrition in him and TPN is just not enough at this point.

I feel confident that if we can get proper nutrition in him, physcial therapy each day continues, and this BK virus hits the road...we are certainly on the road to home!

Thank you for the continued prayers! Today was a day of good news...keep it coming!

Denise

Morning Update:

We did not make it through the MRI last night...we almost made it but his anxiety and need to urinate just couldn't wait the extra 15 minutes. I was frustrated and I think the tech was too, we had to stop several times throughout because he has to pee, and then he wouldn't stop moving. I think he sensed our frustration and kept saying "I'm so sorry" through his tears. At one of the "breaks", I did hear that it looks better, however I think I assumed that because his eye sight returned. Dr. Q has used the term brain damage today, however I am optimistic that he is healing.

No MRI meant no CT last night either. We just returned five minutes ago actually. They did his sinus, his chest, tummy and pelvis. His tummy has been hurting again the last few days. His elevated white count still exists and they are very concerned about it. I too am concerned but pray it's just because of all the healing he is trying to do. I also did a little google work and saw that another possibility could be the seizure medication. I pray it's something we can diagnose and treat quickly. Of course, Dr. Q has the worse case scenario's for me...! I'm sure we will hear something fairly soon, at least that is my hope.

Kyle did a tremendous job with physical therapy again today. She had him sit in a chair for 1/2 hour, although a bit painful...he looked good. It just breaks my heart to see him struggle so terribly with this entire process.

He is now attempting to rest however this pee issue (aka BK virus) is driving me nuts. Kyle recorded going through 46 diapers last night in a 7 hour span. If you calculate that, there was NO sleep to be had by either of us! I want him to sleep yet he will not allow himself to sleep through the peeing he has to do. I fear this will allow proper sleep and healing on his part. The good thing is, the catheter came out yesterday and it doesn't seem painful for him to go potty anymore...it's just VERY often with a little bit of pee!

I will certainly do my best to update with CT results. Although we didn't make it through the entire MRI, they were pleased enough to give us a "free pass" until next week. He will have his nasal wash tomorrow morning - they keep forgetting to do it in the mornings!

Please pray for good news with the CT and some answers to this high white blood count (still in the 22 to 23 range).

Denise and Kyle

GO NUGGETS...!

Monday, May 18, 2009 11:58 AM CDT

Day +68

Phew, we made it a weekend without a trip to PICU or some other form of serious drama. I say serious because last night, Jen and Susie brought dinner and we had a slight problem. They brought salad and as many of you know, no fresh fuits or veggies are allowed back in the bone marrow unit. We went to eat in the front area however that room was filled with another family, leaving us little choice but to head to the cafeteria to eat.

We had finished eating when my phone began to vibrate with "Children's Hospital". Apparently, Nurse Mike came into the room and Kyle was attempting to stand on his own next to the bed. By the time Mike could grab his gown and coax Kyle back into bed...Kyle fell. We came back upstairs immediately and the resident was in with Kyle. No real damage done, just a scared little boy. Mike said he scooped him up off the floor and put him back in bed. Phew!

I'm not certain if it's Kyles brain function that he is doing some of these types of things, or if he is so loopy with drugs that he isn't thinking clearly. Either way, it's very difficult to leave him alone.

Kyle's MRI and CT are scheduled for tonight at 8:30 pm. MRI was very busy today and we wanted to get both accomplished at the same time. They are also going to do the nasal wash to determine where the rhino virus stands. Clearly that stinkin' BK virus is still active as he is still passing clots in his urine and experiencing pain. He has had this catheter in for a week so they are going to also determine if it should be switched out or just taken out to see how he does. While I too fear infection with it in, I can't imagine him without it right now.

Kyle is frail and little and brittle and tiny. My heart is sad when I see how thin he is right now however I do know it won't take long to plump him up once his appetite increases. He is still not eating at all yet his desire to drink water and gatorade is increasing. My poor baby boy!

His white count is still terribly high, yesterday it was just under 22. His ANC is something like 17,000 today (they haven't given me his counts yet).

Physical therapy just left, Kyle did so very well today. He continues to amaze me beyond words!

With that...we are going to relax today and hopefully he will continue to heal. Pray for great results on those tests tonight, I know those are HUGE in determining if and when we will return home. Our goal is my birthday now (the 28th), what an awesome birthday gift that would be!!!

Thanks for checking in on us...overall, our weekend was better than most!

Denise

Saturday, May 16, 2009 11:39 AM CDT

Day 66

Good morning! Sorry I didn't update yesterday, I had to go home Thursday night to take care of some urgent personal matters on Friday. My mom stayed with Kyle and at first he was so angry with me. I can understand that though, while I don't leave often...I still get to leave. Poor Kyle has not been outside since we arrived on March 6th. He hasn't had a breath of fresh air or small dose of sunlight on his little frail body. Oh wait, we did attempt a home visit when we had our pass the beginning of April...I fibbed. Although, it was a disaster at the time! Maybe I was trying to wipe that memory out...

Anyhoo...Kyle is doing better each day. His eyesight is improving and his brain function is also taking steps in the right direction. Monday, he is going to have a CT of his chest, an echo of his heart, and a nasal wash to check the status of that rhino virus. On Tuesday, he will have another MRI on his head to check the status of the damage caused by the cyclosporin.

He is in great pain when he is awake, this BK virus is just kicking his butt. He continues to urinate clots quite a bit. Most of the clots aren't as bloody anymore, they seem more like mucous from his bladder. They are painful as he tries to pass them through the catheter as well. He usually wakes to go potty and then has to push his PCA button to manage the pain. He also seems to be getting loading doses every two hours. A lot of what I have read is that most hospitals attempt to keep children sedated until this stinkin' virus passes. I know he is healing...I can see it each time he awakes!

His counts are high...which is concerning to some. His nurse is doing a urine test as I type. She is wondering if his broviac line is getting infected. I am wondering if the catheter is. I read that many transplant units don't use catheters due to the high risk of infection, and Dr. Q also made note that he was concerned about it as well. I just can't imagine trying to get through this virus without one. It's also possible that his bladder problems could be causing the high white blood count.

Todays counts:

WBC - 22.9 (never have seen that high of a number)
HGB - 13.2
PLT - 188,000
ANC - 21,526 (oh my goodness...see comment on WBC!)

I hope he is not getting ready to fight something ugly here, we just want to heal and go home. I was teasing a month ago when I said that I was going to plan my 40th birthday here!!

Kyle has to do three sessions of physical therapy today, he is less than pleased with it! He is so terribly skinny and frail though, I know he needs it. I'm not sure he is going to get around at home. I think he is only 31kgs today...not good! He hasn't eaten in well over a month, he continues to get nutrition via TPN (IV). I was hoping his appetite would start back up this weekend, I haven't given up hope as it's only Saturday morning.

Amanda is back on the unit, she had a whole 10 hours at home before being readmitted this week. Just talked to her mom, Michelle, and was told she is fevering, has some GVHD, and an "uncommon cold". Hmpf.

Kia also returned this week to the unit. He has an eye infection and will have surgery tomorrow morning for that.

Taylor Jones and Amanda are both Day 100 today...woo hoo, congratulations to them and their families.

Please continue to keep us in your thoughts and prayers, we have so much healing to do...as individuals and as a family. I feel good things coming in my heart...

xoxo

Denise

Wednesday, May 13, 2009 5:10 PM CDT

Denise is back in the saddle...wow, I just didn't really know how to function after witnessing a very unexpected siezure from my little man. I was on the phone one minute, looked over at Kyle (who I thought was trying to pee) and realized he was not OK. Along came the Code Blue to room 708, I handled myself with so much strength and determination. I never left his side, I kissed him and whispered to him. One of the first questions one of the 20 doctors asked me was how long he siezed for, and with a typical response I said, "gosh as a mom it lasted it 15 minutes, but honestly it was maybe 2 minutes."

A short while later, the majority of the folks left the room. Dr. Q stood by my side and Kyle's side the entire time. He immediately got us in for an MRI and when we wheeled him down and out of BMT did I lose it. He did have another siezure in the elevator coming back up but luckily we had ativan on hand and nipped it pretty quickly.

Everything else almost became a blur to me. We were in PICU and yet I was so broken down that I felt almost afraid of my own son. I was scared out of my mind and it was so hard to hold him through the pain and hurt he was feeling. I felt like a failure are a mom as I have NEVER left his side as I did this time. Luckily, my mom was there to help and so was Jen...they were rockstars actually.

I can't describe much, the only thing I can mutter up is how "hard" this is. I found myself trying to describe things and I can only say, "it's so hard!"

I knew something wasn't right with him when he just had this terrible shriek when he cried and his eyes suddenly looked dark. I think the 2 am siezure was it. That next morning, my baby boys eyes were dark and empty...yet scared too! He would hear my voice and attempt to look in my direction yet his eyes were blank. It was then that Jen told me, "he's blind!" My knees buckled and I left the PICU room. The empty, dark eyes now made sense to me.

I was told that it was most likely from the cyclosporine (his anti-rejection med) and it should reverse, the time frame was uncertain.

He went to sleep yesterday at 4:30 pm and slept and slept and slept. So many thousands chanted out prayers for healing and as we woke this morning, he has regained some eye sight. His eyes are still dark but not as empty. I can see in his eyes that he is terrified and confused. His brain function isn't quite right. Hard to describe, almost like his brain isn't clicking with his body real well.

He did have physical therapy a bit today and did alright. He is just wittling down to bones right now, so hard to see as well.

His CMV and HHV6 have now had two negative test results so that is great news. They removed the Foscarnet from his list of meds. He is still positive for the BK virus and is in major pain from it. His bladder and "boy parts" just hurt terribly. He will have another nasal wash on Monday to see if the rhino virus is still present.

He is scheduled to have a CT and echo tomorrow or Friday and another MRI on Monday. He is now taking an anti-siezure medication and will probably have to take that for the next three months.

His counts are as follows:

WBC - 10.3
HGB - 12.1
PLT - 135,000
ANC - 8549

I can't thank my mom, Jen and Susie for kicking it in when I couldn't. I have since regrouped a little bit and am back at fighting this and healing my baby boy. While this is terribly difficult, I know in my heart we can do this. I just sometimes need to be picked up from the floor after I've been kicked in the gut!

Thank you for all of the continued prayers, messages, donations, cards, love, support, gifts, thoughts, you name it! Please keep those positive thoughts and prayers coming our way.

Today - I pray for the BK virus and it's symptoms to leave my little boy alone!

Denise

Wednesday, May 13, 2009 7:21 AM CDT

DAY +63 (I think...it's early)

Good morning everyone. I was up early with Kyle when I realized I didn't update the site last night and figured have of you would strangle me if I didn't do it soon. I do have some good news. Yesterday around noon Kyle got to go back up to good ol' BMT 708! Bless all the nurses and doctors in PICU, they are great, but we don't ever want to see them again!
Once upstairs, Kyle was able to rest off and on during the afternoon with only a few headaches and bladder spasms. We saw Dr. Foreman, the oncology nuerologist. He told us that a lot of Kyle's frustration, restlessness, and aggitation are classic symptoms of this Cyclosporin reaction and will subside. We ask everyone how long this will take, but always get a shurg of the shoulders and the "every child is different" schpill. It's frustrating. By 5:30pm Kyle fell asleep again and slept through 'til about 5am this morning. I am so realived he woke to bladder pain and not those KILLER headaches. Nurse Becky had to draw the urin out of Kyle and got a huge blood clot, we think that is what was causing so much pain this morning...fricken BK Virus. The one plus of Kyle waking up early was Becky assessed his eyes and he was able to tell her how many fingures she was holding up, and what animal sticker she was pointing to on his wall. She also had him try to touch her fingure while she moved it around (kinda like a drunk test) and he was able to in front of him and a little to his right. It looks like his peripheral vision needs some work and everything else is just a little out of focus but never the less, the kid can see something today! Denise will be very happy when she wakes up.
As for Denise, she got a really good night of rest at home Monday night. We decided to give Ty and Riley a "mental health day" from school so we all slept in. The morning was nice and slow with pancakes and coffee so Denise could recharge her battery. Riley decided she wanted to go to the hospital with us yesterday and stay the night with Denise. I'm sure I will be seeing those two in a few hours.
As for now, I think I will try to catch a few more winks.
Keep the prayers coming for Kyle, we made some baby step yesterday but still have a ways to go.
-Jen

Tuesday, May 12, 2009 0:19 AM CDT

DAY +61

Hi everyone, it's Jen again. Thank you so much for all the support and well wishes through this site, facebook, and phone calls, it really means a lot to know that there are so many people rooting for Kyle.
Last night Kyle had his 3rd seizure at about 2am, roughly 8 hrs after the 2nd. I was sleeping in the room with him and woke to him rattling his cords. The doctors and nurses quickly took care of Kyle and got the seizure stopped. I was assured, for the millionth time, that seizures are not as bad as they look and that he was fine. After a few minutes all his stats returned to normal. All in all he was probably up for 2 hrs all together during the night. During those times he is just frustrated and restless with bladder aches (BK Virus) and horrible headaches. The good news is that has been the last seizure that I know of.
Nan relieved me around 8:30 in the morning and I went up to the sleeproom with Denise. As you can imagine Denise had a really restless night aswell. I think she got about hr long intervals of sleep between worries and heartache. We slept off and on 'til about 1 when Michelle, Amanda's lovely mom, brought us a much needed Starbucks. We got in a shower and snuck out to breath real air and grab lunch for my mom and Nan. By the time we got back Kyle was having a spinal tap to releave some pressure and to pull fluid to double check for viruses and infections. They did a EEG later on too to check Kyle's brain waves and of course got no news from the techs who did it. He is having some nuerological affects mainly from the swelling of his brain (another side effect of the cyclosporin reaction). The nuerological affects have been weird arm movements, not being really with it, the weird cries and wimpering, and unfortunately not being able to see. It broke my heart to tell Denise today that Kyle couldn't see her, but we have been told that this problem usually corrects itself with time, as do the other issues. Are hope is that once the swelling goes down and the nerves begin repairing we can get our old Kyle back and get the hell out of PICU.
Tonight Nan had Denise and I go home and she is staying with Kyle. So I drove Denise home to spend some time with Ty and Riley, both of whom need their mommy right now too. Denise talked to both Ty and Riley about whats going on with Kyle right now. Riley took it pretty well, but I am sure she doesn't truely get it. Ty on the other hand is really concerned but does his best to be tough and supportive. I am staying with Denise tonight so we can get up and go in tomorrow after getting the kids off to school. My mom, Susie, will be there early to give Nan and break.
Everyone please keep praying and sending your positive energy and strengh out to Kyle and Family. He is a tough kid who has faced about every curve ball that can be thrown at him, but he always, always, always comes through.
Goodnight and I hope I have good news tomorrow.
-Jen

Sunday, May 10, 2009 10:40 PM CDT

DAY +60

This is Jen, I told Denise to go to sleep and that I would sit with Kyle tonight and take care of updating all of you.
It's another day and another set of problems. Kyle really hasn't had any sleep since we left the PICU on Thursday night. He would wake literally every ten minutes with urination pain and belly aches. Last night I stayed with him and it was the worst yet. He was highly aggitated and loopy, waking at least 5 times an hour, and no drug would make it better. At about 8am the nurses decided that Kyle had to have the cathader back in if he was going to get any rest. They were right, he promptly passed out and slept for a good 6-7hrs. In the mean time Nan had brought Riley and Ty in to spend some time with Denise on Mother's Day.
At 3pm after we had all left and Denise was on her own Kyle had a seizure. The nurses called a Code Blue and everyone rushed into the room. After Kyle was done seizing Dr. Q ordered an MRI and bloodwork. My mom, Nan, and myself rushed back in to find Kyle fast asleep and Denise a ball of nerves. The MRI showed Kyle reacted to his anti-rejection drug cyclosporin. Every so often that medication can cause seizures and "focal slowing" in BMT patients. The majority of patients who react this way do recover once the cyclosporin is stopped and the nerves in his brain have time to heal. So par for the course for Kyle Lindgren to be be "one of the few". On our way back up to his room Kyle had another seizure in the elevator, but luckily Dr. Q, Nurse Katie, and a resident were with us. Denise said the second seizure was more mild than the first, but Dr. Q thought it best to head back down to PICU. In his words, "Kyle is not in critical condition, but I think it would be best to be in PICU where there are more eyes".
So here I sit watching Kyle sleep (thank god), while Denise tries to recoup up in a sleeproom from her tramatic Mother's day.
Please send your love, prayers, and good vibes to Kyle, Denise, Ty, and Riley. This family needs a break, they are exhausted.
-Jen

Saturday, May 9, 2009 2:25 PM CDT

Day +59 (I slept so I can count today)

Let's see...everything tends to blur at this point in time. We are back in the bone marrow transplant unit. Joined by Amanda Peebles once again (our fellow Broomfield transplant rock star). Kyle is resting when he isn't going pee (every 15 to 20 minutes). He is on the bi-pap machine to help his lungs, 4 times a day for one hour. He tested postive for the rhino virus as of yesterday, other tests are still pending. So we've now had: HHV6, CMV, BK, and Rhino for those that are keeping track!

Luckily his counts are looking good still:

WBC - 11.5
HGB - 13.8
PLT - 104,000

Thank you to those that have brought us food (Julie for Panera awhile back, Jen and Susie for all the time, Nicole for the Quiznos and the great mommy survival bag with mommy "juice"). Thank you for the financial donations to A Cure For Kyle as well. I can't thank you all enough for all that you do for us during this journey, it sure is taking MUCH longer than we anticipated. We should have known that no two child is ever the same and this journey is so difficult to predict.

Tomorrow is Mother's Day, and while I continue to apologize to my mom for letting it sneak up on me this year...I can only say that not only am I grateful to have such a wonderful and helping mother, I am grateful to be the mother of 3 amazing children. I thank the Lord every day for these kiddo's. They inspire me, amaze me, and teach me things I never dreamed possible. They have changed who I am and how I view the world, each bringing something different and unique to the table. I am so proud to say that I am the mom of each of them. And tomorrow, regardless if we are here at Children's Hospital, we will celebrate Mothers Day as everyone should...as a family! I feel truly blessed!

Happy Mothers Day to all of you Mom's and Dad's that fill the shoes of moms, you do not go unnoticed! Enjoy your special day, hug your kiddos, and of course pray for Kyle. First, he needs to catch a break, second he needs strength to continue this fight, and third a full recovery!

Thanks for checking in...we love you and need you!

Denise and Kyle

Thursday, May 7, 2009 8:52 PM CDT

Update from room 708...we're back!

This morning after I updated, echo came in to check out the fluid or lack of fluid around Kyle's heart. They were very pleased and we were given word that the tube would come out and we'd head back up to BMT. Phew...never thought I'd be glad to get back here!

It took much longer than anticipated as Deb DeJesus went Code Blue shortly there after. Oh my heart hurt to watch the whirlwind unfold outside our room. Deb earned her angels wings at 4:45 pm today. Please pray for her family, this little 17 year old girl was all her auntie had!

After much trouble of removing the stitches from Kyle's chest tube (and lots of screams of pain), the tube was removed just after 2 pm and we were out of PICU by 4. I was amazed at how long that "piggie back" tube was and when the doctor pulled it out, it was like he had started a lawn mower. OUCH!

Another big ouch...his catheter fell out as well. Although we aren't sure if that's a good thing. That BK virus has him still peeing every half hour. Kyle has elected to keep it out for now so we will see how tonight goes. I am expecting little to no sleep.

The discussion on his lungs is still up in arms. Kyle does sound better and isn't working as hard so they are pleased. No test results but they did add testing for the BK virus to his lung tests. I had done some research on BK and passed on to the doctors that BK is shown to possibly cause respiratory problems therefore they are going to see if that could be the problem. They are going to treat soon with the C-pap(?), breathing into a mask one hour a day three times a day in hopes to open up his lungs. This hasn't started today but maybe tomorrow.

I am terribly sleepy right now so I am going to try to crawl in with him and take a very short snooze and repeat every half hour.

Thank you so much for the continued prayers you guys, we feel each and every one of them so please keep them coming our way. While we are happy to be back in room 708...our ultimate goal is to return home!!!

Hug your loved ones tight...

Denise and Kyle

Thursday, May 7, 2009 9:21 AM CDT

Day +57 (I think, I counted laying in bed)

Last night was a restful night for the most part. We didn't go to bed until after midnight and after a few whimpers when I crawled into my little area, I jumped in with Kyle and fell asleep next to him. We both crashed hard! I woke up at 5:30 am to see his monitor looking decent. He is on one liter of oxygen again (phew), his blood pressure is OK, resp is better, blood pressure is still a bit high.

Nothing has come out of his chest tube as far as drainage goes, which is pleasing to all. They are going to do another echo this morning to ensure the area around his heart still looks good. If this is the case, the tube will come out today...! I was also told once the tube comes out and he is recovering well, we can head back up to BMT. Kyle really wants to get up there, as do I. This floor is emotionally taking a toll on me and causing me to play games with my mind. When you are alone, Kyle is sleeping and action is happening in the halls...it's scary!

Our neighbors are fellow BMT patients, Deb DeJesus is next us. I've chatted with her aunt many times and have seen the picture of the beautiful 17 year old girl hanging outside her room. I've seen her in BMT walking the halls and I've seen her switch rooms in oncology several times now. Today, they are next to us in PICU...they've spent a week down here and I chatted with her Aunt at lengths yesterday. Last night, as I was heading back from the restroom I heard the dreaded phone call outside her room, "Dr. Q. told me that's it's time to gatehr the family!" I took a deep breath and entered our room. Those words will stick with me, the tear my heart apart, and I pray we NEVER have to receive or make that phone call. I feel as though God whispered to me at that exact moment and said, "you won't!" I continued to see our BMT and oncology nurses stroll down to bid farewell to the beautiful girl who gave the fight of her life and will not live to see her 18th birthday. So unfair...!

Dr. Q also stopped in here last night and scared the crap out of me with his "what if" scenario's and "it could be this" scenarios. I think this is why I appreciated Dr. Albano so much...I don't think like a man and his tactics are a lot more scary! The truth of the matter is Kyle's lungs look like hell, they are terrible, they are horrible, the worst they've seen, nobody knows what the hell it is...I got all that! Kyle came off of 5 liters of oxygen and a face mask yesterday, he is on one liter and a nasal can. He isn't breathing nearly as hard or working as hard...this I know too! The initial results are negative on the bronc they did yesterday but of course there are much further and intense tests to be done on it...that I know too! I also know Kyle is a fighter..! I don't know what's going on with his lungs, I have seen the CT results and agree they look horrible, but I am keeping the faith.

He is on steroids and several antibiotics. The girls that have strolled down to say good-bye to Deb stop in here too to give me words of encouragement and share uplifting stories with me. I'm not sure I want to attend rounds this morning with regards to Kyle, I haven't yet determined that. I will keep you all posted on the echo they will do today and if there is any further news on his lungs. They haven't done any other CT's thus far.

Please continue to keep Kyle in your prayers as he fights this...whatever "this" may be! Please pray for Deb's family and Deb as she is expected to soon earn her beautiful angel wings. Oh how my heart breaks...

Denise and my fighting little man

Wednesday, May 6, 2009 12:04 AM CDT

I just finished listening to rounds in the PICU, here they invite the parents to attend rounds. I do believe that's a good thing however some of it does goes "poof" right over my head. Glad my regular docs were there to translate.

This is what I heard, "his CT scan is the worst of any BMT kid I've seen" although this also was said, "looking at his CT, I was shocked and impressed when I came in and actually saw him. I was expecting him to look terrible and be on a vent. He looks great and you would never know that was his CT I was looking at!"

They immediately did a bronc scope on him again to see what is going on his lungs, they are in terrible condition and unsure exactly what is going on. They had to put a breathing tube in for the procedure, did temporary paralysis on him, and knocked him out. At the point they were going to tube him, I left.

Mom, Jen and I went to grab a quick bite to eat (yes, I am doing my best to eat when possible). When we returned, oh is it hard to see your child with a tube coming out of his mouth and taped down. This is my baby boy...

I was greatly encouraged when they told me they would not leave the tube in, he would not stay on vent unless necessary. Kyle is a huge fighter and he is already back to having oxygen through his nose again.

The respiratory doctor showed me the tube of "junk" they removed from his lungs. His first words were, "Kyle just can't do anything normal can he!?" That's our Kyle, nothing is text book, nothing is easy, he keeps you on your toes. The fluid was almost a reddish color which they say is blood. They did the scope and know he is not bleeding. They do not believe it's fungal or viral at this point (results in the next few hours I guess). They do think it's his capillaries in his lungs spilling over. They doctor did seem encouraged but as you all have gathered...things can change so rapidly around here.

As for his heart, as of last night...there was air around his heart. They do want to do another CT today to see what is going on again because his heart rate is still high. The tube in his chest is not draining anymore fluid...I think that's a good thing although sometimes I wonder "what the heck do I know!?"

He looks like he is resting comfortably right now. He does look good all things considered. PICU is a whole new world for us, we sit in a "fish bowl" here, have one on one nursing care, and we have lots of "people" who like to lurk into the room...

Thank you everyone for your thoughts and prayers, guestbook entries, cards, and gifts. I can't keep up on those at the moment but know that we are very grateful and very thankful.

Kyle wants to get back to "his room" (BMT room) pretty bad but I do know we are where we need to be here in the PICU. It is encouraging to hear him refer to our real home on occasion as well. I cannot believe the fight this little boy has in him, my gosh if you all could see what I see! He is fighting the fight....and I am so very proud of him!

I will keep you all posted as things arise, the best I can!

One proud mommy - Denise

Tuesday, May 5, 2009 12:06 AM CDT

Surgery is scheduled at 1 pm today, trying to move it up. They are going to do surgery to remove the fluid rather than the "window" at this point. He is too delicate (lungs are retaining fluid as well) to have a full surgery at this point. Once surgery is complete, we will take up residence in the ICU. My adrenaline is rushing, the tears are holding back, I just want my precious boy to feel better!

Please pray...

Denise

Monday, May 4, 2009 5:54 PM CDT

Day "I've lost track my brain isn't working"

Finally talked to Dr. Quinones a short bit ago, and I am so sad to say that Kyle will have to endure another procedure to remove the fluid around his heart.

Here's the deal. A few weeks ago when he was retaining fluid around the heart, I was told that the steroids and lasix might temporarily fix the problem. Some children (like Kyle) will reaccumualate the fluid once they are off those two medications. Unfortunately, Kyle is one of those children where they will need to go in to remove/drain the fluid.

Dr. Q feels the best procedure to do this is to enter through a small incision and put a "window" into the fluid sac to allow it all to drain. The fluid will then be absorbed by the body. The recovery is fairly short but could be in the ICU or in our room here. The surgeons will determine where they want him to recover but he wanted to give me a heads up.

The surgery will be in the next 12 to 24 hours. I haven't told Kyle just yet and I fear he is going to be so sad. I'm rehearsing the "right" words over and over in my head as I type. This is so heartbreaking and frustrating.

I have made known to everyone how unhappy I am about yesterdays events unfolded so I do feel everyone is walking on eggshells around me today. Kyle is still in immense pain, on the full amount of pain meds he can get, and is terribly drained.

I am certain the right words will come when he wakes up, and I am certain we will both shed those tears together. I've reserved a sleep room here at the hospital so a few others can be with me in case they take Kyle last minute.

Please pray this helps finally resolve the problems, my poor baby can heal, and we can get home to fully recover! I am beginning to really dislike this place...who knew it would take me 2 months to feel that way?!?!

More to you as I know more...

Denise

Sunday, May 3, 2009 11:47 PM CDT

Day +53

Oh my goodness, I don't even know where to begin. As I start to type, I hit "delete delete delete!" Start up again, and more delete.

Just over two hours after the procedure began to remove the fluid around Kyle's heart, the "brilliant" doctor came out dejected and with obvious frustration. After 10 attempts to remove the fluid around his heart, she was unable to get the needle into the sac to put the drainage tube into place. She felt horribly about it yet felt that after so many attempts, she did not want to risk harming him or his heart and felt it was time to just stop.

Once back into the area Kyle was, one of the doctors said that they would get Kyle back on steroids and probably do another Echo to see how things look tomorrow. The doctor who was dejected, well she was ready to try again tomorrow with better equipment and in the cath lab. What? Better equipment in a better area of the hospital? Are you flipping kidding me?

Kyle woke in terrible, terrible pain! And one of the worst moments thus far, he awoke looking for the tube in his chest. The tube they said they would put in place for a day or two to drain the fluids. A tube they said "the best of the best" would get in no problem. He grabbed at the bandage in the center of his chest and it was then I had to tell him, "they didn't get it in baby!"

The tears, the frustration, the hurt, the sadness, the fear...he was terribly upset! He knew that they would want to try again and he told me, "no"! I told him that we would talk to Dr. Quinones in the morning and see how he feels about it. They are not rolling him in there again tomorrow without a fight from me! It will take some serious convincing that we need to roll him back in within 24 hours to get this done. And more importantly, it will take someone convincing Kyle to do it again within 24 hours.

As they rolled him back up to his room, we felt like today was all for not. What a difficult and draining day! Why in the world can't this all just be better, why can't we get through this and get on with our lives, why is it so difficult to have good things happen...it's one thing after another after another? Why does Kyle have to suffer so terribly? Why are we being tested at such great depths? I just don't understand...and I probably never will!

With that, I am going to lay with my Kyle and continue to hold his hand while he stays in his deep drug induced sleep! F#@& Cancer!

Denise

Sunday, May 3, 2009 8:31 PM CDT

Quick update, Kyle is still in ICU getting the procedure done. They started at 6 pm and said it would be roughly two hours. We just received an update, that Kyle is doing well. They are having difficulty getting to the fluid around his heart to place the drain. It's a delicate area (ummmm no kidding) so they are just being slow and cautious.

We thought he was under and as I went to kiss his soft head, I leaned down to his ear and whispered, "I love you baby" and he whispered back, "I love you too"...one of the docs said that about killed her, she was going to shed some tears over that one. Here they were thinking he was out yet he hears my voice and he's able to whisper back! That's my boy!!!

Jen and Susie just went to pick up dinner for us. Please continue to pray for Kyle as he is clearly not out of the woods with this procedure. Freaking fluid....!!! Freaking cancer....!!!!

Keep the prayers coming that they can get to the fluid and get it drained without damaging his precious heart!

-Denise

Sunday, May 3, 2009 2:04 PM CDT

Sorry for the lack of updates and this one will not be so detailed. We are just hitting so many obstacles and road blocks that I am at the end of my rope here.

Kyle did test positive for the BK virus. Since his fluids around his brain and heart decreased back to normal, it was decided that they would up his fluids to flush his blood clotted bladder. In doing so, the fluid has now doubled up around his heart, his headaches have returned, and his body is swollen with fluid retention. His left eye is almost swollen shut due to the increased fluids. He looks terrible and feels even worse. My heart is completely broken and frustrated.

With that being said, after an Echo and detailed xrays...Kyle is receiving platelets in order to head to ICU this afternoon. The cardiologists will perform surgery this afternoon sometime to remove the fluid and may possibly leave a drain in for awhile. He will stay down there until he recovers....

please keep Kyle in your prayers, he looks so terrible right now...it is tearing me up inside.

I have Jen and Susie here with me now, mom is heading down soon. Thanks Claire for taking Riley for me...thank you!

pray, pray, pray...

Denise

Thursday, April 30, 2009 5:39 PM CDT

Day +50 (I like that) -

Of course he tested positive for the BK virus, silly me! Word just arrived that yes, indeed he has the virus. Many of the nurses informed me that almost all kids back here that have had cord blood transplants have the BK activate. Sadly, that gives me some comfort to know that it's not just Kyle!

Last night was the MOST miserable night yet...oh my gosh! We were literally up every 1/2 hour to 45 minutes with this little pattern of misery:

1. "gotta pee"
2. stand up urgently to grab the urinal
3. start to pee and scream in pain
4. pee and blood are on his legs, the floor, his sheets, his boxers, the bed, the IV pole, the towel I put down...
5. Wipes the pee and blood from his body
6. Change his boxers, change his sheets, wipe down the floor, the bed, the pole
7. toss dirty boxers into bad
8. put hot pad back on Kyle's naked body (ran out of clean boxers) with covers
9. kiss his forehead and crawl back to my bed
10. Repeat every 1/2 hour to 45 minutes ALL night and morning

I cannot recall ever being so tired. By 6 am, we ran out of clean boxers...I think we went through all 15 pairs in just one night!

Mom arrived early this morning so I took the dirty bag of boxers home to wash them, had lunch with Ted, picked Ty up from school, folded all the boxers and came back in here by 3. No nap...no time!

They did another heart echo on Kyle today because his heart rate is elevated, they also did an ultrasound of his kidneys and bladder while I was gone.

The doctors just came in to inform me that the heart echo was great. They think the increased heart rate was due to his low blood pressure and consistent pain.

The bladder ultrasound showed his kidneys are just fine however he does have numerous clots in his bladder. The lining of the bladder is also inflamed. This with the news that he does indeed have the BK virus. They are unsure if they want to treat the BK with the standard medication because it has a high tendency to cause reactions...and since Kyle is a high reactor they aren't sure they want to do it. They feel they can help flush him, continue with two other medications and the virus shall pass. They don't feel his blood output is high enough of a concern at this point. I agreed.

To help reduce the pain his is feeling at this point, they did put him back on the PCA pump. Kyle and I also discussed them putting a catheter back in. While it was terribly painful the last time, we both feel that it will reduce pain and allow us to sleep better. With the catheter he can put his boxers back on and not have to get up and down so often. It will also reduce the acccidents and clean up. Kyle agreed to put it back in later today and give it a try. They may use a one that will also flush his bladder...!

My true concern here is pain management. I have shelved "home" for now, as it breaks my heart to see him suffer so terribly.

The spinal tap yesterday seemed to relieve the pressure in his head for now. They have decided not to put him on medications for that right now. They will hold off and do another spinal tap next week to check and see if there is additional pressure and fluid build up. This came on the recommendations from neuro-oncology doctors.

I think, in my totally sleep state and stupor, is all for now. Boy do I pray for relief and sleep around this place, pray with us. The nurses teased that Kyle has now had problems with every body part so therefore unless he stubs his toe on the way out the door...we should be good to go right???

Thanks to the very cute Kindergarten class in Indy for the adorable letters, drawings and class photo...how flippin cute was that??? I will take a picture and post it. My camera batteries are dead and I need to reload.

My brain is not functioning properly...I will close with his blood counts:

WBC - 7.3
HGB - 10.3
PLT - 53

Denise and Kyle

Wednesday, April 29, 2009 6:03 PM CDT

Day +49

Hmmm....so much happens that I sometimes lose track of where I left off.

Yesterday morning, Kyle continued to scream in pain as he urinated out blood and clots. What a difficult thing to watch him go through and to see the clots passing as he goes is just even harder. They did take a urine sample to test just before noon. Many whispers of the "BK virus" are floating. I guess the majority of the children here who have cord blood transplants are having this issue so it's not uncommon (not that it makes it ANY better).

I strolled out of here at noon thirty with Jen. My mom came to sit with Kyle so I could go have a breakdown at the house, well she didn't know that but that's what I did. I just have so much going on in my life and it's difficult to not be able to focus on just getting Kyle better. So on top of watching Kyle suffer and try to heal, I have other pressing issues that frustrate me as well. I just want a moment to regroup and focus...so I took it, and cried the day away.

I came back last night and Kyle's pain continued each and every time he goes pee. It's so heartbreaking as he literally screams in pain. I wish I could take it all away, enough is enough! We were up every few hours to repeat the entire process, I think I snuggled in with him until about 4 am before I crawled over to my bed.

We woke again at 8 am to rush down to MRI. They decided they would do the MRI and spinal tap today. No time to plan, dress, or even brush my hair...we were off. It was a two hour ordeal that left Kyle pretty drained and still suffering from headaches and bladder problems. MRI could not do the contrast because Kyle's BUN level was elevated.

On our way back to scrub into BMT, Jen and Susie greeted me with a Starbucks...gosh I love you guys! It was good to sit with them whilel Kyle slept away some of his pain and discomfort.

He awoke around 2 pm for his spinal tap over in clinic. The procedure to longer than I anticipated but I was told they were doing a procedure where they inject into his spine a little tube where they can measure the pressure levels. I stood and held up a wall while I waited. I talked to several nurses and Dr. Quinones. He hadn't heard about the blood clots but immediately guessed BK as well. He was rather saddened as he was anticipating discharging us on FRIDAY...darn it! Not with BK or blood clots though.

The door opened to the procedure room and I entered to a sleeping Kyle. Dr. Gore told me that they removed over 30 mls of fluid with the normal range being around 7 mls. She was amazed at the amount of fluid and pressure he had. They have a new medication to add of course, one that helps with the fluid in his head. He did awake with much more head pain, sort of discouraging but what the heck do I expect at this point!?

The doctors will then send off the fluid for further testing but they do expect it to be normal. Phew...

MRI results came back and everything looks perfect. Another big phew...!

I finally put a bite of food to my mouth at 4:30. Kyle is sleeping soundly with a dose of ativan on board. His nurse said that one of the residents thought that the initial pee culture showed the clots having nitrogen(?) in it, so this may not be BK virus although official test results won't be back until tomorrow. Ugh!

We are both exhausted and had a very busy day, still don't think I've brushed my hair...oh well, such is life in a day of a BMT mom!

Todays counts:

WBC - 6.3
HGB - 11.1
PLT - 63

Sodium was a tad low, BUN is 26.3 with normal between 6-17.

I think that's it for now, I am letting Kyle rest as much as possible as this was a long day for him. I am hoping the headaches will subside since the pressure and fluid have been relieved. Pray with me!

Also praying this urine is just a urinary tract infection and not another stinkin' virus! C'mon home sweet home!!!

Denise and Kyle

Tuesday, April 28, 2009 10:08 AM CDT

Day +48

Thank you for all of your thoughts and prayers. The cardiologist just came in to tell me that his echo from yesterday looked much better and they were pleased. The fluid has decreased significantly. Thank you Lord.

Of course, things can't go smoothly for us...last night, Kyle claimed to have peed some blood. He handed me his urinal and although I saw no blood, I had his nurse send it to be tested. Early this morning, he started having lots of pain while he urinates. I feel terrible for him. I did tell his nurse however I haven't heard anything on that yet. I will certainly keep you all posted.

Dr. Quinones came in with an obvious goal to get us home. He asked Kyle what it was that was keeping him here at this point (besides the docs of course). Kyle felt it was his headaches. I agreed but also added that Kyle has a habit of letting his pain get out of control before he complains, then when he receives oral medications for it, they take too long to kick in and the pain is terrible.

Dr. Q came up with a plan to attempt to go back to oral medications and pain management and see how he does. Kyle was also given the go ahead to eat again and we made the bad decision to let him eat pizza. He ate half a slice and felt it most of the evening. It also resurfaced later on.

So what I have gathered so far is, he is off two antibiotics (had for 14 days), he is now off steroids, he is getting lasix once a day, his tummy is all cleared up and is able to eat, the fluid around his heart is greatly reduced, he is making his own red blood cells and platelets, his counts are good, blood pressure is good, he has engrafted (100 percent donor cells), and things are slowly (very slowly) getting better.

We have headaches to battle (thanks Nancy for your suggestions, I do remember Matthew really battling them as well), and now we need to deal with pain during urination.

Todays counts:

WBC - 9.8
HGB - 12.1
PLT - 86

Please continue to send up prayers so we can get home! We really, really, really want to go home!

Denise and Kyle

Monday, April 27, 2009 12:49 AM CDT

Day +47

WBC - 7.0
HGB - 11.3
PLT - 77
ANC - 4473

Wow, I can't believe how badly I am struggling right now yet your kind words of encouragement, faith, and love are helping me tremendously. I was reading each and every guestbook entry and found myself wishing to print them all and paste them around me to read over and over. My heart and mind are falling apart...

While Kyle woke with his worst headache yet, I felt helpless as he screamed and trembled in pain. They gave him to rounds of migraine medication and a dose of pain medicine before he was able to return to sleep. ML, thank you for the advice on the medications...I threw those out there for the resident to ponder. I am ever so close to requesting an scan of his poor throbbing head. OK, maybe demanding is more like it!

His nurse did just come in to inform me that we are again making some changes and they appear to be positive changes that could hint at a return home once again. After today, they are removing two antibiotics he has been taking since he is Day 14 on those. He is allowed to have bites of food to see how he feels and how his tummy handles it (he did eat some ramen noodles yesterday). He has an echo scheduled today, and if that is good (pray pray pray), they will begin putting him back to oral medications in attempt to lose that IV pole again...aka, possible return home! I am truly hoping for Thursday as I think home would be a great form of therapy for Kyle!

I haven't had the docs come in for rounds yet to give me further information or details but I pray with every once of my heart that it's all good news and more hints of home (even though "home" was not necessarily used)!

Please please please, I am on my knees and begging and pleading to the good Lord!

Denise

Sunday, April 26, 2009 11:01 AM CDT

Day +46

WBC - 6.5
HGB - 11.1
PLT - 88
ANC - 4114

Kyle woke as he does every morning, in tears and pain from a nasty headache. A week later and he still suffers from headaches and some tummyaches. Nurse Katie suggested we maybe do a head scan since the last one was pre-transplant work up. I too suggested it a few days ago but of course, nobody listens to the mom.

Other than the pesty headaches and occassional tummy problems, I do think he is doing alright.

Myself, I'm in a rut. I haven't been feeling well, I'm run down, overly exhausted, and a bit depressed. How does one respond when asked, "how are you doing?" It's a simple question and many times asked just because, or to facilitate a conversation. It seems to flow right after someone says, "hi" or "hello". More like, "hi, how are you?" It's maybe asked out of courtesy. Maybe people just say it because it goes hand in hand with "hello".

I found myself saying, "fine" or "alright". Although yesterdays, "how are you?" nearly brought me to tears as I didn't respond with my typical, "just fine!" Because in all reality, I'm not "fine". I'm not "OK", "alright" or "good" either. I've spent nearly two months here at Children's Hospital, two months watching my son suffer for only God knows why. Two months of his losing weight, battling side effects, dealing with horse serums and chemotherapy, side effects from radiation. All dignity removed from my 12 year old son as every person has poked and peeked at every inch of his body. I've watched him poop on himself, the floor, wet his bed, lose his hair, shake and shiver...as the poor little boy tries to recover and fight for his life. He didn't ask for any of this. And when he cries in pain that his life sucks and he wishes he could die, I don't blame him at all for it.

It breaks my heart. This entire ordeal breaks my heart into small little pieces. I watch my little girl from a distance most days. She is growing into a beautiful little girl and not only does she miss her mom, I miss her too. I watch my 16 year old struggle with school and motivation. I watch him spend weekends alone, with his dogs, and sometimes he comes to watch his brother struggle. He comes to lift Kyle's spirits and usually does a darn good job. Is this what a 16 year old should be doing? Maybe he should be searching used car adds for some little car that he hopes to drive, attending sporting events at school, or even dabbling in the dating scene a little bit. He too has lost out on 9 years of life and is robbed of his years as well.

Our lives have all been on a holding pattern. We don't make plans as we live each day as a single day. I find that the only thing I want to do right now is take Kyle home and be a family. I want to cook their meals, clean the house, spend my summer doing yard work and grilling. I want to see my dogs, see my children together again, and do the simple things in life.

I have so many things going on right now that I can only feel frustration. It's as though everything piles up at one time for me, as though we never seem to catch a break when the only thing we want to do is be together and live a simple and quiet life.

I don't see an end in sight...I try to remain hopeful, I do my best to keep my faith, and I always try to stay positive. Although, the reality right now is that everything is uncertain. For someone who likes to stay in control, having no control is killing me.

Simple...I want things simple! I'm tired, run down, frustrated, depressed, sad, angry, and tearful. I've spent the last two days avoiding eye contact with others in fear someone will ask how I am doing. I'm on the verge of a meltdown, that's how I'm doing!

Please continue to pray for my children and myself! We want to be together again...sooner rather than later! I hate to feel like we are falling apart yet after two months, how can you not!?

Denise

Thursday, April 23, 2009 7:50 PM CDT

Day +43

One thing I am quickly learning about transplant is that it's one step forward, three steps back. The past few days have been a joy, Kyle was showing signs of himself and my spirits were lifted. Today was a difficult day for us.

We didn't sleep so well last night, I was threatening to take out the heart monitor as the continuous "beeping" was keeping me awake most of the night. We awoke early to vomiting and headaches. The migraine medicine did not touch it this time as he was 10 out 10 in pain. He has thrown up numerous times although with nothing in his belly, he was dry heaving quite a bit.

By the time they came to do the Echo on his heart, he was so worked up that his heart rate was sky rocketing to the 170's and 180's. The tech was frustrated because she couldn't do her complete scan on him. While doing the cardiologist came in and watched over her shoulder. I heard them conversing but it was through Kyle's screams of pain and hurt. I thought I heard them say that the fluid looked to have increased, however Dr. Quinones is in and out as I type. He just chimed in for the second time to tell me the echo offical result was "no change", chest xray shows the heart as being "smaller". I will go with the final reading of the results, and I will take it with a smile.

The CT took place late this afternoon and no results yet (unless Dr. Q pokes in again with those results). We were checking to see the results of his tummy and the infection that was brewing in there. While Kyle has a huge appetite right now, he is still on clears (jello, gatorade, juice), and his belly pain is still happening (although less severe). I do think the vomiting has increased however.

I am wondering if those headaches are from dehydration as they try to drain all fluids out of him to help the heart. As he drank the contrast for the CT, the headaches are far less severe. They've also slowed down on the lasix, which should help.

Today, much to my surprise, is the first time he has needed platelets in a loooong time. He will be getting those soon.

I had noticed during his CT that his eye whites were showing a hint of yellow however Dr. Q just informed me that his billirubin is fine and to continue to watch him.

I've watched him so closely that I noticed today his eyebrows are growing in almost black. I think Kyle will be sad because he really wanted his long blonde hair back. Only time will tell however maybe he will just end up being that tall, dark and handsome guy that women dream of!

I was really terribly frustrated and drained today, near tears a few times honestly. Dr. Q just reminded us that this road is never easy. We will have a lot of good days and there will be days that feel like setbacks and that is totally normal. He reminded Kyle that as each month passes, things will get better and better! We will hold on to that and Kyle seemed content with the pep talk. I am sighing some relief as well.

Tomorrow, our assignment is to go outside and enjoy the day. Ty is coming in after his haircut so maybe we can all stroll outside for a little bit in the afternoon. I think the fresh air and sunshine will do him some good!

Good news for sweet Taylor Jones, she is hoping to go to Brent's Place (sort of a Ronald McDonald house) tomorrow. I hope they can enjoy time away from here and begin to heal as a family!

Thanks for stopping in today...!!

Denise and Kyle

Thanks mom for staying with Kyle yesterday so I could enjoy time at home...I needed it!

Wednesday, April 22, 2009 10:47 AM CDT

Day +42

Last night was a GREAT night for Kyle. Once we nipped those headaches in the bud that is. We started him on migraine medicine, and although his symptoms weren't similar to his past migraine, the medication worked very well.

Kyle was permitted yesterday to have "clears" and he was thrilled yet frustrated because he is starving (finally). He drank a gatorade and had an orange jello. Of course he had visions of pizza, burritos, a sandwich, hot dog, and more...I was glad he ate and kept it in with no complaints at all. And you know when you can't eat, it appears every commercial is about some type of food that no matter how gross that food normally is to you, it still looks delicious??? Yup, poor kid! I promised him we'd stuff him so full when he got out of this place...he is down a good 8 to 10 pounds right now. Although, it's a lot of fluid loss as they continue to keep him on lasix to drain him out.

It appears by his shriveled little feet and hands that everything is draining except that fluid around his heart. He was told yesterday that the fluid is what is really keeping him here at this point. While I think we are here until at least next week (knock knock), I hope it's a pleasant stay until then. I think tomorrow is the echo to check the status on the fluid and a follow up CT for the tummy.

Last night (after Biggest Loser of course), Kyle took a nice warm shower and appeared to enjoy this one. Usually, while he showers, I change all of his bedding and get his dressing change for his broviac ready. I also take the antibacterial wipes and scrub down his room. It had been a pattern that I'd hit the point where I was putting new pillowcases on when he'd request that I hurry it up. Last night, I did everything and he was still in the shower...which allowed me time to attack these out of control eyebrows I am sporting.

After his shower, he put his lounge pants on (another first as he lives in his boxers) and we took a stroll around the unit. Yes, we strolled. I thought for sure he'd be slow moving as his body looks so frail and yet he kept a good pace up. We then returned to bed where he sat up, logged on his new Webkinz "Charlie" and continued to drink his Gatorade. We watched television until 12:30 am with not a single complaint. We went to sleep content! I think we slept six straight hours and it felt like 12.

We are also very pleased that Kyle is now making his own red blood cells and platelets. His counts look good (and yes I am keeping in mind he is still on steroids):

WBC - 10.3
HGB - 12.3
PLT - 62
ANC - 8858

This morning he awoke with another headache and he complained his tummy hurt. They gave him more migraine medication and some pain meds are going in. While I did forewarn his nurse today that he will have a lot of anxiety as I intend to go home today. He told me last night that he can't believe I am "leaving him like this"! Awwww...the guilt! I want to go home, pick Riley up from school and take her for a girl afternoon (a little mani-pedi for her school dance on Friday), pick Ty up from school and enjoy his 16 year old company, see my puppies, and have a relaxing dinner before heading back in here for the night. He swears I am not coming back tonight, but I will!!! He has such anxiety when I leave him. I find even if I am about to drop from food starvation, he requests that I "hurry back" when I go to grab one of my many frozen meals! What have I created??? Or shall I say, what has cancer created??? An amazing bond between mother and child yet also a needy little man!

Well, as I continue to ramble on about our great evening last night, I must attempt to steal the shower out from some parent that is longing to take one as much as I am (hope it's not you Gina)! While Kyle is nervous about me leaving (and my mom is coming in to be with him), I am thrilled to get out of here (it's been a week since my last escape). I cannot wait to feel that 80 degree weather that I can only view from these hospital windows!

I hope you all have a blessed day, hug your loved ones tight, and continue to pray for Kyle's ultimate healing!

Denise and Kyle

Tuesday, April 21, 2009 2:05 PM CDT

Day +41

Rounds came and went this morning. The news is that he is now allowed to have clear liquids. His first request was Gatorade. He drank a small glass of it and was thrilled to be doing so.

His body is now making red blood cells, white blood cells and platelets...all very good news!

His tummy seems to not hurt as badly although he is still requesting pain medications fairly regularly. He is also battling the headaches. We just gave him a dose of ibuprofin to see if that helps. He also had a dose of good ol' Tylenol. I think these will help with the headaches.

They did stress that we are in a holding pattern due to the heart fluid. There has been no change so we continue to wait and see.

I do see spurts of Kyle through all of this, I think he is finally eager to get home as well!

That's it from us for now, pray for those headaches to go away, and that fluid to finally leave his little tired body!

Denise and Kyle

Monday, April 20, 2009 9:53 PM CDT

Day +39

We are probably on Day 4 of no sleep again. The poor guy is still on lasix in an attempt to dry out the fluids, especially those around his heart, therefore we have gotten no sleep. He is up around the clock to use the restroom so we are both pretty drained.

We woke this morning to an other echo of his heart. The result came late however it was "no change". I think cardiac is concerned it hasn't changed at all yet grateful it hasn't increased. We will continue on the "wait and see" path with a follow up again on Thursday.

I was also told that his next CT scan to see where is tummy issues were at would be Thursday. I want to say I thought it improved however later this evening the pain came back. Yesterday, he was talking about bean and cheese burritos with a side of rice and now he is back to hurting a bit. Along with those nasty belly pains, pesty headaches has joined the party. He seems to get a lot of pain medication during the day, which frustrates me terribly. Yet, the pain is never enough to awake him at night so I'm not sure what to make of that all. I wish pesty headaches would go away, I don't recall inviting them to this party!

The docs made rounds this morning and I was ready to jump on them about the insulin injections and finger pokes of his bruised and battered finger tips. I still do not recall EVER feeling like I was going to refuse treatment as I felt on Saturday. And guess what??? Denise was right! I got the sense the docs were not pleased with any of it and before I could utter anything beyond "insulin" they muttered to me that all finger pokes and insulin injections have stopped! I gathered they themselves were unhappy with how that all unfolded. Amazingly, his levels up to that point were all good.

His steroids are tappering down as well, I am anxious to see how that will impact how Kyle feels.

We smuggled our dear friend Nikki in today, thank you so much for the gifts, the stock pile of food, and the Starbucks. Kyle loves his new Webkinz although we are yet to name him. I know it's a "him" because Kyle is yet to have a "her", and I guess at twelve I don't blame him...girls are gross!

Thank you Gina, Taylors mommy, for doing a food run tonight. The tacos were yummy and I certainly owe you!

Thanks Jen for the clean clothes and blanket! And Mom, thanks for the bottles of water and new box of kleenex!

We also had visitors last night...thanks for the company Ted, Jack and TJ, always awesome to see you guys!

I'm hoping for a peaceful night, lots of rest, and tons of snuggles with my little boy. I wish I could whisk him away and make this all better, all in due time! I continue to realize we are not ready to be home...OK well I am, but he is clearly not!

Thank you all for the continued support, love, thoughts and prayers. I yearn for the day we can put this all behind us and get on with our lives once once and for all! I look forward to summer days, bbqs, shorts, open windows, sunny days, friends and lots of laughter!

Denise and my sad little boy Kyle

Sunday, April 19, 2009 12:43 AM CDT

Day 38

Through the window of room 708, I see sunshine creeping in through our closed blinds. I had a bagel with lots of cream cheese for breakfast, and as I sat in the parent lounge for BMT, I could see how beautiful the snow covered mountains look. The sun was beaming down, the snow melting, and traffic slowly moving along the streets. It was then that I decided that we really need to have a good day with a positive outlook. I am so drained from the bad and the negative news. It has taken a toll on both Kyle and myself.

Yesterday, as they poked his tummy for a second time with insulin, he cried many tears as he begged to "just go home!" This is the first time that he has made such a declaration and with such meaning since we arrived. He is tired of having his finger tips bruised and battered for glucose tests. He cringes at the sight of the insulin needle getting ready to protrude the skin of his sore belly. I too have grown weak from this, it hurts me to the core as I continue to grasp to understand the past nine years. I am yet to make sense of it all...and fear I will not have any answers until the day I meet the good Lord myself, face to face!

They put Kyle on the heart monitor yesterday and I as I continue to stalk the equipment, his heart rate seems to be good. He has been on room air for two straight days and actually was able to sleep without oxygen being pumped into his dry little nose.

I realized that at night, while he is sleeping that he doesn't appear to have belly pain as he does during the day. He isn't getting pain medications at all during the night and the pain isn't requiring him to wake in terrible pain. They talked about putting him back on the PCA pump a little bit yesterday however, I am not going to allow it. The nurse mentioned it as she felt she get's too busy to come in every 2 and a half hours with pain meds. Hmmm, no comment! I will not allow the pain pump again at this point in time. I so desperately wanted to decline the insulin injections yesterday...

We awoke after a not so restful night to another xray tech wanting take a quick picture of Kyle's chest. As I type, I saw the doctor making her rounds this morning so maybe she will have some good news for us. I also need to see where we are with the high dose steroids he is on.

My fear with these steroids is that they will continue to pump him up and then when he is off them, we will return to where we started. I'm not certain what is going on with my little mans insides at all. I hold on to the wonderful news that he is 100 percent donor cells, that's about all I have to hold on to right now. I look each day for the small steps in the right direction, they are happening for the most part.

We are tired and we are frustrated, yet we will continue to forge on with grace and dignity, with hope and faith! We continue to do our best to smile, keep our sense of humors, and friendly ways. Yet I think you can see it in our eyes, we are tired. I didn't imagine we would still be here after this long, I guess nobody really does.

I forgot to mention on top of our already grumpy day yesterday, Tyler called to tall me that he thought the water heater broke again. I called our wonderful neighbors and had their husband run over to check out the damage. It was not the water heater (thank goodness as that was just replaced), the bad news was it was the sump pump. It was not on so it drenched the storage area as well as the rest of the basement. My mom attempted to drain it with the carpet cleaner however she said it was way too wet. My fear is if it isn't cleaned properly we will risk molds and mildew. Unfortunately, I am not at home to check it all out.

Doctor just came in, heart rate is still low...which is good because it's not in distress. Echo thinks they can hold off until tomorrow to check Kyles heart out. No results from xray yet. Guess we are still sitting tight...no real surprise there.

Todays counts look good -

WBC - 6.9
HGB - 11.4
PLT - 67
ANC - 5547

Thank you to those that have donated money to A Cure For Kyle. It is with those wonderful donations that we can continue to fight this battle together and for as long as necessary. This is terribly important to myself and this liitle boy that can't stand for his mom to even grab a bit too eat for "too long"! I certainly cherish each and every night as we cuddle up into bed and I can feel his warm little body next to mine. Occasionaly he reaches out for my hand and softly places his on mine, a way to reassure himself that he has him mommy close.

Please continue to pray for TaylorJones as she battles high fevers next door to us. Taylor is a precious 4 year old little girl, battling AML. She has touched every nurses heart as I hear endless tales of Taylor and her adorable personality. Although I welcome having them as neighbors, I would love for them to go home soon!

Guess that's it from us today...back to Webkinz World!

Denise and the World of Warcraft playing Kyle

Saturday, April 18, 2009 1:28 PM CDT

Day +37

Let's see, I feel like it's same stuff different day here!

They just jabbed Kyle in the tummy with insulin. This is something I am trying to understand. His glucose levels rise when he is on TPN, they say his glucose rises with the high dose steroids he is getting. I asked about having TPN with less sugar but they feel that's not what is causing the rise in glucose. So...Kyle was in tears as they put insulin into his tummy this morning. It just breaks my heart. I am tired of seeing him hurt, I'm tired of problems that keep arising, I'm tired of taking it one minute at a time, I'm tired of his tears and pain, I'm tired of trying to remain positive...but I will continue to do all of the above as long as we have to!

During the day, not on TPN, his insulin is 99 to 105 (normal range). While on TPN, it incresed once to 350 and just now it was 203. They made his insulin point at 200 so the poor guy was only 3 over. I don't like injecting more into him at all!

We went to bed at 8:30 last night, totally exhausted. We awoke at 9 am with them putting the heart monitor on him. I guess his heart rate has been low. Now that he is awake it has increased.

His tummy still hurts but it doesn't appear to hurt as much. He is taking a few oral pills with small sips of water, and he is eating ice chips.

He has been on room air and off oxygen unless he is sleeping. This is a nice step as well.

We are terribly frustrated and tired of all this. Home is not in sight at all, they say three days of high steroids, three days of medium and three days of low...this would put us until the end of the week and they do not discharge on Fridays or weekends.

I don't know what else to say. We want to go home, we want to try to be "normal" and we want to move forward. We've been here since March 6th, and while I know others have stayed much longer, that doesn't ease the frustration we feel.

They are not doing an echo today, will do another one tomorrow. We will try to make the best of this situation as usual...some good news would surely help!

Please continue to pray for Kyle and we deal with this day in and day out.

Today's counts:

WBC - 5.6
HGB - 10.8
PLT - 65
ANC - 4474

Glucose currently 203
BUN is high at 26.8

I'm hoping to see my family again today, mom is thinking about bringing them in! Running out of food options here! Getting tired and a little bit grumpy!

Denise and Kyle

Friday, April 17, 2009 10:45 AM CDT

Day 37

Let's just add the words, "high blood sugar" and "insulin" to our assortment of others like echo, xray, infection, typhilitis, fluid, heart, and lungs shall we!?

Word this morning is that he has high blood sugar, could be caused by the steroids he received last night. They are contemplating adding insulin to his IV pole today. They are trying to reassure me this is from the high dose steroids he received last night.

Kyle and I slept terrible and woke bright and early to the portable xray machine and two young techs. They were very fast and took a quick picture of his lungs. No results yet. I am also making him do his lung exercises more now. Yesterday he could get the spirometer to 1000 (which is still low for the norm) yet this morning he could barely get to 750. I am going to stay on it today as I am becoming overly frustrated and want out of here! I haven't heard the results of the xray yet.

The echo for today hasn't rolled in yet. They are doing these every day to monitor to the fluid that has accumulated around his heart.

His tummy pain is still there, it is being controlled with pain meds. He is attempting to eat some ice chips this morning, although the blood sugar is probably making him more thirsty than usual. He's on Day 5 of no food or liquids and his frail little body shows it. He is getting pretty skinny.

For now, we are will continue to sit and wait. I sit with one eye on that monitor, watching his heart rate, breathing, and blood pressure. This morning, he seems to be doing OK overall...we are just tired of it. We know we are exactly where we need to be right now. We continue to keep the faith and believe.

Taylors mom, Gina (our BMT neighbor) informed us last night that they have a holistic nurse at the hospital now. I think that is awesome and am yet to figure out why we are just finding this out. I have a pretty good idea anyway. I am going to look into contacting her today. She did reiki on Taylor and was quite impressed with the results.

Our goal for the day is to work on the spirometer and marshmellow shooter, we are going to open up these lungs. Oh and I think we might have to get another afternoon nap in, we didn't sleep much last night thanks to the lasix!

Thanks to Nan for bringing Ty and Riley in last night to visit, along with yummy Outback Steakhouse. I am guilty of not eating and losing weight myself. This rule of not being able to eat in the room is taking a toll on me as well. I probably get one meal and a snack in a day, not good I know!

I will let you all know what comes out of rounds this morning, as well as results of the xray and echo. Please continue to pray for strength, wisdom and healing!

Denise and the ice chip eating Kyle

Todays Blood Counts:

WBC - 3.6
HGB - 10.9
PLT - 66
ANC - 2887

Echo just showed up...I am going to go watch over her shoulder and act like I know what the heck I am looking for.

Thursday, April 16, 2009 5:30 PM CDT

Day +36

Hello from a dreary, rainy Colorado room 708.

Dr. Q just left the room and I think I am a little confused. I thought the fluid around his heart was pretty consistent. I was told this morning that there was actually more fluid yesterday but that now it's the same as yesterday. Right now we are sitting and watching. They feel they are uncertain as to the fluid buildup, is it just fluid? Has his infection spread? Is it GVHD?

They did a repeat echo this morning but it appears we are still sitting and waiting. Mostly in part because his blood pressure is still good and his heart sounds good. They have decided to start steroids tonight. They would prefer the fluid clear itself, however if it does not, they will send down to surgery to insert a needle and have surgeons remove it.

They also just informed me that he has a few spots on his lungs they are uncertain about, is it infection? They don't know but hope the steroids will help resolve that as well.

So they are now questioning if this tummy problem is just spreading? Is it GVHD? The good news to them is he appears to be improving physicallly although he is on a lot of IV antibiotics and pain medications. They do not want to be invasive on his body right now by poking and proding internally, therefore we will see what the steroids help.

Dr. Q's second concern is that many kids get put on steroids, the problems clear up, and then when the steroids are pulled...the problem resurfaces.

Are you all confused? I am...and I think they are a little bit too! I typically gauge my level of concern on how Kyle is behaving and right now, today, he is having a pretty good day! Sure we want to go home, we want the pain to go away, and we want all of this behind us but we also know we have to get through this for those things to happen.

I don't enjoy typing about so many problems and concerns. I would much rather type about the weather or how bored we have become, I suppose in due time.

I feel clueless and helpless, basically in a wait and see phase! I just pray it resolves yet I am concerned that it's just piling up...tummy, heart, lungs...! Please pray for healing for Kyle, wisdom for the doctors and strength for all of us!

Denise and Kyle

Wednesday, April 15, 2009 10:53 PM CDT

Day +35

Let's see...the ups and downs of this rollercoaster are enough to give me a heart attack. First, Kyle has typhilitis (down)! Then, Kyle is 100 percent donor cells, woo hoo we are so up. Then, back down we go...there is fluid around Kyle's heart.

Mondays CT scan showed not only the infection, but fluid around his heart. This brought about an echo yesterday to indeed confirm there is fluid. They wanted to recheck it this morning. They did a recheck this morning and the fluid seems to be the same amount. An option would be to insert a needle into his chest and drain it. His blood pressure has been good and his heart sounds good so we will continue to sit and wait.

Tonight, his blood pressure appears to be increasing...as is mine! I'm trying to stay cool and calm. I attempt to read the nurses face each and every time they check his blood pressure. Tonight...I am offically scared!

They will recheck his heart again tomorrow to see what is happening, I pray with every ounce of my being that it is going down.

So now, on top of huge pain in his lower tummy, we have to worry about his heart. Way to steal the thunder of those awesome donor cells!

Please continue to pray for my baby boy...this is so tiresome and trying! Also pray for our cute neighbor, Taylor as her mom is equally as frustrated!!!

Thank you so much for checking in, please keep those prayers rolling our way...from your lips to God's ears!

Denise and Kyle

Tuesday, April 14, 2009 10:39 AM CDT

KYLE IS 100 PERCENT DONOR CELLS, NO MORE KYLE CELLS...THANK YOU LORD!!!

Day 34

Yesterday started with xrays that showed nothing new. Then in the afternoon, we informed Kyle would be heading down for a CT scan. I was happy about this because the xrays weren't showing anything and Kyle was clearly in pain. Although, I do think his pain was subsiding a little bit yesterday.

After drinking 800 mls of gatorade mixed with contrast (aka "poison" as Kyle put it) we sat and waited, and waited and waited. It's one of those "hurry up and wait" moments. Drink this in an hour but ooops we won't be on time anyway!

Kyle felt well enough after the CT scans that he showered and wanted to eat. He had a handful of chips and a few bites of mac and cheese! And of course, this brought on a little bit of tummy aches.

Shortly after he ate, we were told he is now NPO (or nothing to eat). He is showing irritated bowels on the scans so no food and IV antibiotics. His fever got a little bit higher last night as well. Although, the fevers are very random.

This mornings report is that he has typhilitis yet again. We are familiar with this diagnosis because this is what he had when he relapsed in May of 2004. This is what had brought us back into the hospital for blood work and the diagnosis of relapse. The good news from todays stand point is it's not as severe as it was back then. I also feel like it was starting to clear up already. His white blood count was 12.6 yesterday and today it's 4.1, which is vital in fighting it off. They have also stopped all oral medications and we are back on IV medications and antibiotics. Lots of rest to the tummy is also key. Do you all hear me knocking on wood around the world?!?!?!

Although typhilitis is a very serious condition, the doctors are pleased that it is not a case of GVHD. I have not heard back on the bone marrow aspiration results from last Mondays procedure yet but will certainly share that when I get it. Continue to pray for lots and lots of donor cells in his marrow!

So...no more real plans of going home, we just have plans to heal. I am glad we didn't attempt home as we would have been right back in here and it could have been so much worse. Tonight, we will watch the premier of Deadliest Catch and continue to relax. I'm hoping Jen can bring the kids in, I am missing them terribly!

I may hear more later but here are today's counts:

WBC - 4.1
HGB - 10.8
PLT - 20 (already got more this morning)
ANC - 2911

His Potassium was down so he also received that in the early hours.

Currently, he is sleeping peacefully and has not complained of his tummy at all!

Keep the prayers heading our way as we want Kyle to fully heal soon!

Denise

Monday, April 13, 2009 1:14 PM CDT

Day +33

Well after a not so good yesterday, Kyle was taken down for numerous xrays this morning. The xrays revealed lots of gas movement but that was about it.

He is now going to head to CT for some scans, well after he drinks that nasty, overly sweetened, "gatorade" type drink for a half an hour.

The docs are also sending a GI specialist up to see Kyle. They are talking about doing a scope of his GI tract to ensure there is no graft vrs host going on. That will probably not be done today.

They feel it's just not right for Kyle to be in so much pain and discomfort for so long. He is also having random fevers and they would like to get to the root of those as well.

His counts look really good today...don't have them in front of me, so that was good news!

We've decided that we are no longer going to focus our energy on going home anymore. It seems to just disappoint us. We will now make plans to stay here and make the best of a yucky situation. Jen and I were joking that we should have a Deadliest Catch premier party here tomorrow complete with crab legs to eat! It started as a joke but it sure sounds good to me!!!

I will keep you all posted on what comes of all these tests, his nurse just pointed out he hasn't peed yet today either...grrrr!!

Thank you all for your kind words and prayers...keep them coming! I hear Tay next door is Kyle's fever buddie...hmpf, not so good news!

Denise and crampy Kyle

Sunday, April 12, 2009 11:46 AM CDT

$Easter countdown banner$

Day 32

I hope you all are having a wonderful Easter with your friends, family, loved ones!

I went home Friday night to enjoy dinner with some friends and ended up staying home for the night. Ty slept with Kyle here and I think they had a good time. Ty seems to really lift Kyle's spirits, gives him a sense of normalcy I believe.

Again, I left and returned to Kyle's temperature on the rise. We've since been battling random temperature increases, vomiting, low blood pressure, headaches, and BIG tummy aches.

I wish this would resolve soon. I think Kyle and I have given up on our release date as well, I just now it's not today and probably not tomorrow. The good side, at least we weren't discharged last week and sent back in with this. So the *one day at a time* motto lives on and for today we will enjoy Easter from room 708.

Nan brought in an Easter basket already this morning...filled with is favorite, chocolate covered marshmellow bunnies. Thanks Nikki for dinner Friday with a bag of Easter goodies for my kiddos (I brought that in as well). And thanks to the couple wandering the BMT halls on Easter morning delivering baskets to all the kids here.

Todays counts are as follows:

WBC - 12.6
HGB - 12.3
PLT - 18 (just got another refuel this am)
ANC - 11,000 (ummm...thanks GCS-f from yesterday)

Kyle is settled in playing XBOX and I am wishing I had a cup of real coffee this morning! I am a bit sad that I couldn't enjoy Easter by attending a nice Easter Service with loved ones, eating yummy plates of brunch, nibbling on candy, and taking photos of all the kids eagerly looking for colorful eggs filled with goodies.

With that...have a blessed day and Happy Easter to you and yours!

Denise and Kyle

Thursday, April 9, 2009 9:46 PM CDT

$Easter countdown banner$

Day +31

So, after dinner with Jen...we were scrubbing in and met our neighbors here in BMT, Taylor Jones Taylor Jones. I've heard quite a bit from the nurses about 4 year old Taylor and she is simply adorable. Her mom is equally as precious! Please pray for sweet Taylor to beat this stinkin' viruses that keep popping up after transplant. I had heard they have been in and out of PICU this past week so please keep them close as well!

Kyle is doing pretty well overall I guess. If it's not one thing, it's another. He is still on oxygen and will probably go home on oxygen. Grant took him off this afternoon and his stats plummeted to 69 percent. Yikes!

I brought Ty back in with me today. It was good for the boys to hang out and I think seeing Ty rejuvenated Kyle a little bit. They watched a movie and played some video games. Jen and Ty just left for the night!

Kyle is now sitting up in bed, playing his video game and is itching his body like crazy! It's weird to see Kyle's IV pole with four pumps, all turned off...nothing flowing! The PCA pump is gone and they are working on all oral medications. The tummy pain is still there and Dr. Q told me that it will probably remain until at least Day 56.

Tonight, I am a little sad about being here for Easter. One of my favorite things to do is color the eggs and while I became sad by that, I realized as Riley once told me "it doesn't have to be Easter to color eggs!" So maybe next week, we will color them (after all I bought the kit to do it). Although, can I confess...I hate boiling the darn eggs.

Well, my thoughts are scattered. Kyle and I are going to take a walk in a few minutes! He says popcorn sounds yummy, so we must get it while it's sounding good!

Hugs from 708...

Denise and Kyle

Wednesday, April 8, 2009 12:06 AM CDT

$Easter countdown banner$

Day +30

Last night was a rough one but luckily it was a false call so far. He had a fever around 12:30 and again at 2 am. They took xrays of his chest and tummy at 3 am.

This morning, xrays look perfectly fine and fever is gone. However, this did buy us a little more time here. We just received word that our anticipated release date is Monday. This of course is on the hopes that nothing pops up between now and then.

I was also just told that the PCA pump is going away today. Anxiety filled Kyle and he just took another load of it before they take it away. I think he has anxiety about the transition.

Bone marrow results won't be in until next week sometime. The preliminary showed baby red cells, baby white cells and no platelets yet (I think I could have guessed that because he is getting those at least once a day). The good news is no leukemia cells...

I am planning on heading home soon to get a nap in and do some laundry. Not sure if I am going to stay home for the night or not. Mentally, I should stay home as I feel I am at my wits end. I told Kyle I would pick up Yes Man (the movie) for him. We are half way through Season 1 of Heroes as well. Ed picked up Season 2 for us to watch so we have that one on board when we are ready.

While we are not happy to have to spend Easter here, we know he is just not ready to be home...frustrating but true!

Thanks for checking in...! Jen and Susie, thanks for the margaritas last night...they hit the spot!

Denise

Tuesday, April 7, 2009 9:59 AM CDT

$Easter countdown banner$

Day +29

Today was our hopeful go home day and although we aren't going home, we are still seeing things move in the right direction. Yes, I am terribly frustrated. I guess more so because I don't really see a desire to go home in Kyle. He is comfortable here, he feels safe here, and he wants to be here. This, to me, is discouraging and something we haven't faced before.

He is getting platelets as I type. Red blood is next on board. We won't get results from the bone marrow aspiration for a little bit longer. We continue to pray that the results are good and that our Houston baby is taking over in full force. Kyle has been in quite a bit of pain from the procedure.

I did get word that he hadn't pushed his pain pump since midnight last night...great news. I think the slow release morphine is making him groggy though. We slept all night long and he continues to be "out of it" a bit this morning.

They pulled his anti-rejection meds this morning and last night because his levels were way off. They just drew blood to get another level this morning.

Not much else...I am hoping and praying that we can go home Thursday, I'm not sure I can mentally handle next week. We shall see!

Denise

Monday, April 6, 2009 2:09 PM CDT

$Easter countdown banner$

Day 28

We just returned from clinic where they did the bone marrow aspiration. We are looking to see what cells are in Kyle's marrow and we are certainly praying for it to be cells from that sweet little baby in Houston, Texas! The results are not expected back until at least tomorrow.

The tummy pain was pretty intense by the time Kyle returned to the room, he is defintely attached to his PCA pump. This little addiction has offically bought us more time here. Word today was maybe Thursday (they don't discharge on Fridays) and possibly early next week. I too can sense his desire to return to "his room" when he is away too long. It's a little frustrating but I also understand his desire and need to fix that tummy pain.

They have added more oral medications to wean him off the pole. They are now working on giving him a slow release morphin pill that he can take to see how that might manage his pain.

I think I am just feeling a bit frustrated but yet I understand all of the reasoning behind this all. I'm glad he is doing well overall...

Mom just got here with lunch so I am going to attempt to eat! More later from 708!

Keep those prayers coming for awesome marrow results!

Denise

Sunday, April 5, 2009 9:12 PM CDT

$Easter countdown banner$

Day +25

Today was interesting...we were told at 11 am that Kyle would indeed get his 4 hour "get out of jail free" pass from the hospital. Unfortunately, he was feeling terribly so I wasn't sure how that would work out for us. I was OK either way, although I did think some fresh air would serve him well.

Finally, pass time rolled around at 4 pm and Kyle was ready to venture home for a little break. Today was the day Jen, Susie and a group were to clean deep clean the house as well. I think panic set in for them when I called at 11 am to tell them we may be home around 4:30 pm for a home pass.

Luckily, my mom, my dad, Jen's dad, and Carrie all ended up rushing over to help. Thank you so very much!

We ended up zipping home but I knew we wouldn't be gone the full 4 hours. The house looked AWESOME, I am still impressed how you deep cleaned the tile floors! The house is in tip top shape now!

My dad picked up dinner and Kyle had a few bites. He didn't move from the kitchen stool and it didn't take long for the tears and pain to begin. I crammed the rest of my dinner in, packed a few more things, and we were off. Thanks mom and dad for picking up dinner.

Kyle has "sleepy room" (aka propofol) tomorrow at 11 am. He will have his first bone marrow aspiration since transplant. I'm anxious, curious and nervous to get the results on that. We will also go over all of the medications I picked up Friday night from the pharmacy. The bag is HUGE and kind of intimidating.

I'm not sure where we stand with heading home Tuesday, I would not be surprised at all if it were a few more days. His pain is still pretty intense in his tummy, he's still on oxygen most of the time, and he isn't eating very much! We shall see...we are ok with it either way!

Currently, Kyle got a loading dose of pain meds and is falling asleep comfortably in his bed. I think I am about to put some sweats on and relax myself.

Thank you Jen, Susie, Mom, Dad, Gil, and Carrie...the house looks terrific. We cannot wait to get back to home for good! Wish I could help but as you know, Kyle is in need of his mommy!

I will do my best to update after we get the bone marrow results! Please pray for some good news!!!

Denise

Sean...I finally saw the t-shirts you sent to Kyle, pretty darn cool, thank you!

Sunday, April 5, 2009 0:05 AM CDT

Day +24

I'm not exactly sure what to update or how to update for some reason. As of Friday, Kyle was doing very well and we were shooting for a Tuesday release date. His pain medications were heading down and he ate a cup of peaches. We celebrate the small things ya know?!

I went home Friday afternoon to get more things done for the return home with Kyle, spend some time with the kids, and have some down time for myself. I had 11 medications to fill at Walgreens (I'm sure they loved me), I had to pick up stamps, pay bills that accumulated over the month of March, grocery shop a little bit, Easter shop a little bit, the carpets were deep cleaned at the house, the 4Runner was detailed, and two dogs had to get current vaccinations at the vet. Those things are now done. I also have to make note of all of those things because the hospital also maintains a check list to ensure I am doing all that is required of me prior to Kyle's return home.

I can say that my sleep schedule is offically messed up. I didn't go to sleep until 1:30 am and promptly woke up at 7:30 am. So much for sleeping in. I did lay in bed for a good hour or so in hopes that I could return to a nice sleep, no such luck. I layed in bed thinking to myself, "well if I'm not going to fall back to sleep, I probably could finish up laundry and the other items that I need to do!" Riley came strolling in at 8:30 and I hoped that maybe here warm little body would allow me to fall back to sleep...but NOPE!

I ran numerous other errands and had lunch prior to heading back in around 5 pm.

I returned to Kyle not looking good and not feeling well. His room was dark and he looked down and out. He was pretty out of it and the nurses were standing over him with a thermometer hoping that if they keep taking his temp in different ears that the reading might change (I can relate). He never did truly fever...thank goodness, but he did flirt with the idea.

His tummy was in pain as well as his arms and legs. I don't know if he was getting mentally discouraged as the talks have shifted from us returning home on Tuesday. My take, I do not want to return home before he is ready. I'd hate to get home only to have to return right away. I also don't want him home before he is truly ready to be home. There is no rush and he certainly went to hell and back with this transplant.

After a little bit of my return to the hospital, he began to perk back up. He took a shower and made a request for FOOD!!!! Yes, weeks upon weeks without food and he wanted it (aside from the peaches). Of course, room service stopped at 8 pm and yes, it was now 8:20. I was given permission to head to the food area and get what he wants. His list was small but good, "a banana and a blueberry muffin". He inhaled the banana first, then took several bites of the muffin before proclaiming, "nothing has a taste!" I told him that we just need to see how his tummy handles the food first. So far, so good...nothing has resurfaced! It's those baby steps that I keep telling ya'll about! Huge milestones to us!

He seems much better now that I have returned to the hospital. I've left 3 nights since March 6th and I think it's very difficult for him when I do leave. I can't stress enough how proud I am of Kyle. He is such a strong and amazing boy. I've watched him over these last nine years and he never ceases to amaze me or inspire me. I am so fortunate to be his mom!

I look forward to bringing him home soon! Thanks mom for staying with Kyle while I was away. I appreciate you giving me the opportunity to breathe and I know you also cherish the chance to take care of him. Thanks Jen and Susie for all that you do, my little angels! Thanks for the financial donations to A Cure For Kyle, those also allow me to prepare for Kyle's return home and help me focus on getting him better. I know tomorrow there will be a group of girls at my home giving it a deep clean, I appreciate you all taking the time to ensure my home is safe for Kyle, big hugs there. Thank you to everyone who has sent cards, letters, gift cards, gas cards, food, photos, prayers, etc... This journey has been such a long and difficult process and without you, I'd be lost! You all provide me the opportunity to focus my time and energy on Kyle and kicking cancers butt! Oh and thanks Tommy for the "Cancer Stinks" bumper sticker, I have the perfect place on my truck for that one...right next to the "Cancer Can Kiss My Ass" sticker!

Kyle has just fallen asleep at his laptop so I am going to shut down Room 708 for the night!

Keep it coming everyone...

Denise and Kyle

PS - Jen just said the April calendar is up on the Cure Calendar (link above). Don't forget to check it out!

Wednesday, April 1, 2009 11:58 AM CDT

Day +21 or also known as April Fools Day

The major complaints around here are still the big, fat tummyaches. His counts are looking great, no more itching, a little bit of skin peeling, off and on headaches....but big tummyaches. He hasn't had a bite to eat in weeks although he is getting food via IV (TPN). When he does try to drink something other than than water he throws up. I am sure this too will come around eventually.

He is getting blood this morning and platelets are on the way. Thanks Susie Jones for the donation yesterday. Being O negative, they are just what he needs since he is between blood types. These were the only bag of negative in the entire hospital, saved in Kyle's name, so thank you. They are "washing" them as I type and he will receive them sometime today.

I cannot stress enough how important it is to donate. Clearly, Children's is in need of negative right now. Please, try to get in and donate as soon as you can. It takes an hour to a few hours and the last appointment they schedule is usually at 4.

I went home yesterday and picked up a mini massager for Kyle's neck and shoulder spasms. We haven't used it yet but maybe after today's shower.

I enjoyed seeing my kids yesterday. It felt great to be home. We had a nice dinner before I had to head back in. Just a shout out to Dirty Dog (Broomfield Groomer) for an AMAZING job on Zoey, she looks brand spankin' new! Although she still walks like she is 77 plus years old! Ted did find a little lump on her back last night so I am going to have the vet look at that when I take her in for her shots this week. I left my camera at the hospital so I didn't get any photos of the beautiful girl!

Thanks to The Wave (Westminster Car Wash) for taking my 4Runner today to fully detail it. I can't wait to see it! Friday, the carpets are also getting deep cleaned. Thanks to Yvette for donating an extra set of sheets for Kyle. We are also working on getting a new Hepa vacuum cleaner.

Things are rolling along...I certainly could not do this alone so thanks to EVERYONE for putting forth every effort to help us. The gift cards, packages, and financial donations are so appreciated!!! Thanks to those delivering food to my home for my kids and Jen as well. I know Jen is working on getting a group of you together to deep clean my home this weekend...contact her at jenjoturtle@yahoo.com if you are able to help.

Alright...too many in and out of the room for me to concentrate right now! Keep the prayers coming...

Denise

Monday, March 30, 2009 8:40 PM CDT

Day 19

Sorry guys for the lack of updates! I have just been drained...the good news, all in all...Kyle is doing very well. It's just frustrating sitting here 24-7. One moment he is good, then it's another slight concern (unexplained weight gain, high blood pressure, low oxygen, tummy hurts, head hurts...etc). It appears to be one thing after another.

Good news again is his ANC is over 1200. He is getting platelets once and sometimes twice a day. Children's has run out of platelets at certain times as well. This involves them purchasing more from Bonfils, which in turn will get billed to the families insurance. Please, donate platelets here at Children's if you can!

The latest word is that we have an anticipated discharge date as next Tuesday, April 7th. Which means many things...right now it means getting the house prepared and safe for his return. I am hoping to get a home a few times this week to get some of the "to-do" things done.

With that, I am drained and tired. I have not had a breath of fresh air since I ran in 10 days ago. It is my hope to go home tomorrow afternoon for a little bit yet will return to sleep here. Kyle is just not letting me leave much at all.

Have to run again...nurse change, Kyle has to potty, still hasn't showered today.

Hugs...

Denise

Friday, March 27, 2009 11:00 AM CDT

Day 16

Just a quick note that I added some new photos to the slideshow. Kyle has taken up the new thrill of peeling the skin off of his feet and hands so I thought I'd share that with you all. Yuck!

Finally some good news around here...Dr Quinonas used the word "home" yesterday in our talks. He feels end of next week would be optimistic but would like to say the beginning of the following week. He says Kyle is on the early end of the average engraftment statistics and he is pleased so far. This of course, was great news that we were waiting to hear. Our mood has changed a bit since then.

Foscarnet is being used IV to treat the HHV-6 and CMV. His rash has subsided quite a bit. Thanks Cyndi for your wealth of knowledge, we will certainly remain vigilant on his kidneys. Thank ML for your guestbook entry with regards to what you found as well. Hopefully we caught it early enough, which it appears we have.

Our routine seems to be that Kyle wakes up feeling cruddy. Afternoon and early evening are wonderful. 3 pm is usually his hour of *free from the pole time* so he showers, peels his skin off, and we walk the unit. By 9 pm he ends up with a fever (38.7 range) and starts to feel yucky. Ambien has helped with his sleep patterns though. I offered his $50 to split the pill with me but he is yet to take me up on that one. He usually wakes at 3 am and 6 am to pee. This morning, he did wake up feeling better. I only know this because he is already on the XBOX.

Todays counts were also GREAT news, minus the platelet number:

WBC - .8 (.5 yesterday)
HGB - 10.7
PLT - 3 (yikes, never have seen that number before)
ANC - 550 (230 yesterday)

Our nurse discussed switching him over from some IV medications to oral medications so we will test the waters on that. This will just be one step closer to home. I think they mentioned starting with the anti-rejection meds. Kyle was OK with giving this a try!

The snow storm that hit yesterday has hindered our visitors. Nobody came yesterday and I'm not sure anyone will visit today. Needless to say, it's been quiet around here. Riley texts me every few mintues to tell me she loves me and misses me. Rumor has it my brothers are teaching Tyler to drive while he is in Missouri...I'm hoping to receive some photos of this! Wish I could have been there but I am glad they are teaching him guy stuff anyway. Driving would be a nice thing, I think!?!?

Jen said Ductworks did a super job on the house. They are supposed to send pictures of before and after yet the way she described it to me, I'm not sure that I want to see what we have been breathing in since October when we moved in.

I have Jasmine and Zoey going in for shots next Wednesday, thank you for those that helped me research the costs on that one.

I tried to call carpet cleaners and dog groomers however, Broomfield was shut down yesterday and today so apparently nobody was working. I'll have to try again tomorrow. I need to have those things done early next week.

I know a few of you mentioned helping clean my house from top to bottom. I believe I put Jen in charge of rallying the troops on that (got your email Nikki and Denise). Email her at jenjoturtle@yahoo.com if you'd like to see if she needs help. Not sure what the plan is on that one.

Jen is also working on getting the 4 Runner cleaned up...

Time to pay attention to Kyle!

Thanks for EVERYTHING...keep those prayers and that positive energy coming our way!

Denise and count growing Kyle

Wednesday, March 25, 2009 1:50 PM CDT

Good morning from 708...

Let's see, yesterday we received the news that two viruses have resurfaced in Kyle. One is HHV6, which is currently active and can cause central nervous system issues. The other is CMV which hasn't totally resurfaced within him but would have in the next week. Kyle is on yet another antibiotic to help. The problem could arise that it will slow the engraftment process and it could hinder his ability to make platelets.

The antibiotic he is now on requires fluids prior to administering it. The drug can cause damage to the liver (yet another issue). He will have to take this drug for many months ahead as the virus lingers around. He will also be required to have IV fluids at night with numerous minerals to help his liver. Kyle was less than thrilled with this idea.

These viruses are ones he had as a small child that go dormant within the body but never actually go away (such as chicken pox does). Due to him being immunocompromised, these two viruses sort of "reactivated" this past week. They have primarily caused severe rashing on him and some fever spikes. Hopefully, we caught it early and the treatment has started for it.

It's no longer really day to day for us, it's usually morning, afternoon and night...he can change at any minute and you just never know what you are going to get.

Since Saturday, we have been tired and exhausted. I have been on the go 24-7 with very little opportunity to breathe, let alone sleep, eat or shower! I know Kyle and I get discouraged and frustrated beyond words...there are times I know both he and I have wanted to give up yet we know that is not an option.

Right now, he is playing XBOX and cracking his Kyle like jokes that we all love. I was in the gift shop this morning while he was sleeping and found these cute animal stickers that go on our walls and guess what??? They had a pack that included a ferret!!! We bought it and put it up on his wall, along with many other animals, and he awoke with a HUGE smile on his face! I will try to take pics, they make our room much more comfortable.

Riley spent the night last night here, along with my mom and we are having a good time. I love every minute of having her here and I can tell she has missed me terribly!

Today, DuctWorks is at the house doing an amazing job on all of our duct work. They arrived at 8:30 am and I was told it could be 10 to 12 hours. They are going above and beyond for us in their work and taking special care given our circumstances. They have more than accomodated our family in such a difficult situation! I would highly recommend using their services in the future...Eddy Frisk is our contact name. I'm excited to see the difference when we return home.

So a few things for you all here that I need:

1. Children's Hospital is in need of platelets. Kyle's last bag came from Bonfils which I know Children's ALWAYS prefers to use in house blood products. Please consider coming down to donate platelets, even in Kyle's name. He requires at least one bag of platelets a day and a bag of red blood every couple of days.

2. I need to see if there are any great deals on a whole house carpet cleaning, and tile cleaning before we return home. I don't have a service I necessarily use, as I often just rent something. I certainly would feel better for the house to be professionally done prior to our return home. I have both carpet, tile and hardwood in the home. Estimates and further information would be great...email myself or Jen with any and all information!

3. Zoey and Jasmine are both due for shots. I use Arrowhead normally but wanted to price check this as well. Arrowhead charges $69 per dog for shots and an exam. If others could price check for me, that would be great! Again email myself or Jen.

4. Any dog groomers our there??? Would love Zoey to get a very good, professional cleaning prior to us returning home so that I can attempt to maintain it on my own once we return. She is 120 pound, medium to long haired, white German Shepherd. She is going to be 11 on April 15th actually! Price checks, deals...etc, let Jen or myself know.

5. House cleaners??? The house needs an intense cleaning prior to our return home. There are no limits on this, the walls all have to be wiped down, tops of shelves, appliances, doors, vents, EVERY INCH of the home!!!! Deals, suggestions...etc, let us know.

6. My 4 Runner needs an intense cleaning as well. Every inch of the interior prior to us returning home. It's a 2006 Toyota 4 Runner if anyone needs further information.

7. Financial donations to help with these expenses would also be greatly appreciated. A Cure For Kyle information is above. I do know there are many other restrictions and things I need to purchase prior to our return. Kyle will need another set of sheets for his bed (queen sized), a new vaccum, dietary restrictions in place which require extra purchases, medications, daily trips to Children's, etc.

I think that is it for now or at least I can't think of what else we are in for right now. My guard is up as we prepare the home for an eventual return. I am guessing we are at least a few weeks out yet there are lots of preparations and precautions we need to take to keep him safe and recovering!

Please continue to pray for Kyle...he is terribly frustrated and it's hard to see the good in all of this for him. He was devastated when Dr. Q informed him of the two viruses....

Thanks for checking in today...

Denise, Kyle, Nan and Riley!!!

Tuesday, March 24, 2009 10:20 AM CDT

Day +13

NOTHING comes easy around here! I am frustrated, Kyle is frustrated and hurting and we are tired. Kyle is in the dumps and I am trying to dig him out mentally. They finally gave him Ambien last night to get him to sleep. They think the steroids are wiring him and not allowing him to sleep. Saturday night and Sunday night we were up til 4 am as he could not fall asleep. I'm not doing well with no sleep myself. And there is a catch 22 as these steroids have helped him quite a bit, he has turned into an emotional nightmare. Last night, he cried when I wanted to leave and take a shower.

Every side effect or reaction, Kyle gets it. I am tired of hearing from the nurses that "Kyle is the busy patient" or "the hard patient"...can the kid catch a flipping break?

I, as his mom, feel terribly helpless. There is nothing I can do to take any of this away. The best I can do is coax him through this, encourage him, and remind him there is a bright light at the end of this.

Medically, his ANC was at 103 yesterday. His rash is not as itchy, his boy parts aren't as itchy. This morning his tummy is hurting him pretty badly and he is off and on with the fevers. Vanco is still running as well as many others medications, antibiotics, and anti rejection medications. All signs are pointing to engraftment...

Thank you so much for the cards and gifts being sent here. We appreciate it so much. Please keep the prayers rollling for my sweet boy to catch a break from this living hell he is going through!!! We need to see some glimpse of good here to lift his spirits (and mine)...

Denise and Kyle (and Jen, who has been by my side lots)

Sunday, March 22, 2009 10:13 PM CDT

Day +11

What can I say, Kyle is doing ok for the moment. It doesn't work to tell everyone that he is doing "great" or that he is having a "bad day" because it changes so many times during the day. It's frustrating!
Overall, the past 2 days have been seriously itchy. The Dr's and nurses have been racking their brains to figure out if he is reacting to a medication or is experiencing the syptoms of GVHD (Graft Vs. Host Disease). Right now the consensus is that it is GVHD, where the new stem cells are attacking his body. This ok to a point: too much attacking can be very bad, but just enough is what we want so the new cells take over Kyle's body. Being allergic to benadryl makes this process very difficult because there is no perfect drug to help with the itching and the rash. Kyle's best bet is Atarax, which he took the last iv dose in the U.S. last night. He still can take it orally but it takes longer and has not been super effective so far...Once again, FRUSTRATING!
Other than a VERY itchy, aggitated, exhausted Kyle, all is well. Unfortunately this sounds like par for the course during BMT. As for the rest of the family, I think they are hanging in there. Denise is obviously tired (mentally, emotionally, and physically), but is pushing forward. I think Ty is concerned but trying not to let it overwhelm him. Luckily he headed to Missouri with Pop to hopefully get a little break. And Little Miss Riley is being a trooper. She is spliting her time between home with me, with the Gilmore's, with the Biggerstaff's, with dad, or with Nan.
This is a unbelievably tough process but I think it will make everyone stronger and is worth it if it means a cancer free future for Kyle. Keep your prayers and good vibes rolling in...we want'em and need'em.
-Jen

Saturday, March 21, 2009 2:26 PM CDT

My time at home ended with me rushing back to Children's this morning. Kyle fevered all night and was fevering this morning, tylenol won't touch it. He had abdominal pain with it and low blood pressure.

By the time I got in, he returned from xrays already. I was scrubbing in to enter the unit and the doctor on the floor was as well. He said the xrays look OK and were just consistent with someone who has had diarrhea (which is Kyle). He also told me that the blood pressure came under control with fluids.

I got into his room and he looks terrible. My heart aches for him. He is so warm to the touch and they are currently on the hunt for a cooling blanket.

They have him on vanco (antibiotic) and several others as well. They just drew blood to check his platelets, he was approved to get ibuprofen since tylenol isn't working. They just want to monitor his platelets in the process because typically low platelets and ibuprofen are a big no no!

I'm watching him sleep right now and I am very sad for him. He has a washcloth on his forehead, he is breathing pretty heavily, he has a sheet on, and he keeps doing these mini-shakes that make me nervous!

I'm scared, sad and sick by this...please pray! One step forward, three steps back!

Denise

Friday, March 20, 2009 12:36 AM CDT

Day +9

Good morning from Room 708...

We slept once again last night, that was a good thing. I think we had two or three potty breaks but that's better than some nights have been.

Kyle's skin is terribly itchy right now. I probably slather his body at least 4 times a day. He is like a snake shedding his skin and it drives him insane. He has a few sore spots as well however his cute little tush is finally healing nicely. He loves taking a shower and scrubbing down with a washcloth, followed by a mom massage and a clean set of sheets.

Right now he is bundled up in bed and sporting an odd rash on his head and chest that come and go. I can tell he is a little uncomfortable with the skin problems.

He received platelets again this morning because they were down to 19. I haven't seen the rest of his counts but I did hear his white blood count is .2.

The only thing he is left to do before I go home for the afernoon and evening is take his walk. He prefers that I take care of him and get his daily things done before I go. I know he is a little upset about me leaving for the night yet I try to reassure him that I have some things to do.

Tyler and Riley came in last night for awhile. I hadn't seen Riley in two weeks, that was really good to see her. Ty is heading to Missouri tomorrow so it was also important to me that he and Kyle spend some time together before he leaves. Tonight, I can get him packed up and ready to go.

I will keep you posted if there are any changes. Keep the prayers heading our way. I can't thank you all enough for all of the love and support. Thanks to those mailing cards and gifts to the hospital for Kyle, each one puts a beautiful smile on his face. Each day we see more smiles, hear more jokes, and see more progress in Kyle. What an amazing young man, such an inspiration!

One very proud mommy...Denise

Thursday, March 19, 2009 10:39 AM CDT

Day +8

I missed Day 7, sorry guys! We slept pretty bad that night. They gave him medicine to make him potty more to reduce his fluids so we were up quite a bit. He also received middle of the night platelets and blood. At 6 am, he started having an allergic reaction to the blood so they had to stop the infusion and premedicate him (FYI all, he is allergic to Benedryl so that is not our medicine of choice...weird I know). After about an hour, they were able to get the remaing blood in.

Yesterday morning we also received the excellent news that there are signs of engraftment!!! That was awesome news to hear!!! Baby steps...this is all about baby steps!

Kyle and I slept good last night. He was up once to potty at 2 am and then not again until 6 am. He then fell asleep pretty hard this morning, I love listening to his tiny little snores, a true sign of how well he is finally sleeping.

This morning, his belly is hurting quite a bit. I notice it's right before he has to potty and then right after. One of our favorite residents came in this morning to chat with us. She is coming back this afternoon to discuss HOME CARE! I know we are far from going home but just those words are great. She is going to cover how to prepare the house for our return. I know there is a giant list of things that MUST be done before we get there. I have priced duct cleaning but haven't done that yet...! Since we are in a rental, I feel like it should be done because I have no idea. The house was built in the 1990's.

I've also researched a little bit about our loved guinea pig, Nut. So far, it appears he is ok to live with us. The dogs are all getting groomed and shots current. I know we need to have the carpets cleaned and the house sterilized. Not sure what else...so much to think about!

I think big brother is coming in this afternoon. I want him to spend time with Kyle before he heads to Missouri for Spring Break. I am also hoping to have time away on Friday afternoon for the night. Kyle really struggles with me leaving!

I have to run to get his morning medications and mouth care done. Just wanted to catch you all up...

Please keep those prayers coming!!!

Denise and Kyle

Tuesday, March 17, 2009 5:04 PM CDT

Day +6

We finally slept with only one middle of the night potty break and then slept til 9 am when he had to go again....party party!

They delivered Kyle an air bed and it's amazing, he just melts in it and I feel it's helped quit a bit. It has air holes that shoot air onto his body and he loves it.

We made a nice "to do" list on our door in window markers.

1. Mouth Care
2. Sit in Chair for 1 hour per day
3. Lung exercises every 2 hours
4. Shower
5. Small sips of something other than water

We actually do really well with most of them, guess we slack in consistent a little bit. I now need to add 6. Take short walks out of the room.

Kyle did take a 15 minute walk up and down the halls today. It wasn't easy to get him motivated to do it, yet he did confess to it feeling good once he was moving.

He's doing pretty good today. His eye whites are really bloody and he continues to itch yet I think the complaints start to diminish. I must say, he does keep me on the go all day long. I have very few moments of rest...I guess it makes the time seem to fly as we approach two weeks here.

Tonight, I am hoping to eat a bit of a "real" meal. I'm not sure how that will happen but I am craving something decent. Kyle has taken a few sips of gatorade and ginger ale today, nothing solid as of yet. I do think he looks good all things considered.

Thanks Ted and TJ for giving Zoey a head to toe grooming. I so appreciate that as she was a serious doggy disaster. I hear she looks beautiful! I'm still in awe that you two took on that challenge!

Thanks Dave Cohen for the wonderful surprise envelope that was hand delivered by Jayme yesterday. The gas gift certificates are a much needed and appreciated surprise. I intend to catch up with you when I get a chance. And thanks Jayme for the cards from Kyle's classmates.

I'm off again to take care of Kyle...his bed doesn't feel right! I think he likes to see me jump at his every whim ;]

That's it for now...

Denise

Monday, March 16, 2009 1:16 PM CDT

Day 5

Sleep was actually decent last night. We were up a handful of times for the potty however, the intervals were longer. Kyle was also doing awesome this morning until....you knew something had to happen right, can't be easy for us....he had an allergic reaction to one of his anti-fungal medications. Oddly, he had been getting it before however it just popped up this morning. Out comes the epi shot in his arm, respiratory specialists, tightened throat, scared eyeballs, tears, many doctors and nurses...

it took a bit to settle the situation down and the good news, he is sound asleep right now. They are switching out the anti-fungal and that should do the trick. Poor baby boy, he was scared! Amazingly, I held tight and strong throughout the ordeal.

His nurse, Andrew, just came in to tell us that he is no longer on precautions...mom and Jen, no more fantastic yellow gowns for us right now!

Kyle has a little sunction tube holstered to the side of his bed to help him remove the skin that is shedding in his mouth. It's pretty nasty to watch but it sure makes him feel better. They've also brought him numbing gel for his tongue. His mouth is pretty raw. He is also developing sore spots on his body which we are treating and monitoring. I was just told they ordered him a new special bed to help with that.

His oxygen and lungs seem to be improving. His oxygen levels are staying good and his need has lowered. Even though I did get in trouble for testing the waters on that last night, although I think nurse Mike also had his boxers in a bind for some grumpy reason.

I am pleased with how things have slowly calmed down today. My mom is on her way in to feed me and give me shower time. Hopefully, Kyle will just sleep for a bit. I sure love that little man, he is doing an amazing job and I remind him often on how far we've come!

That's it for now...just thought I'd shoot out a quick update. Oh, he did get platelets early this morning...those help too!

Hugs from 708...

Denise and a so very sleepy Kyle

Sunday, March 15, 2009 1:35 PM CDT

Yes, Denise took a break yesterday. Saturday at noon, I decided I would collapse if I didn't get some sleep and the little naps here and there were not working. With much coaxing, I headed home and mom stayed here with Kyle.

I arrived home with lunch waiting for me, thank you Jen. I went through a little bit of mail and crashed for a good three hours. My intention was to return to the hospital, however I woke up and knew that I couldn't and probably shouldn't return. I called and got the go ahead from my mom to stay home, but more importantly Kyle too said it was ok.

I returned this morning and everything appears to be status quo. I think his breathing is much deeper though. His nurse and doc just came in to wake him. They listened to his lungs and said he was a bit crackly. The monitor keeps beeping as well...which in response get's a "take deep breaths Kyle" or "breathe threw your nose baby!"

He now has a pain pump, it took a bit for him to get used to using it. He was afraid he'd get too much so therefore didn't use it much the first night. Finally, I think he is getting the hang of it.

I feel a bit more recharged and am hoping he has a very uneventful and restful day. This breathing is concerning me so I will sit over him like a mother hen.

Thanks to Karl's mom for making a Bronco blanket for Kyle. My neighbors (VanDykes) for delivering food and gifts to the house, you guys are surely taking good care of us. Thanks Mom for giving me a night away and Jen for all that you do. Thanks Nancy and crew for the Itunes gift card. Nicole for the "mommy bag" of much needed goodies. The well wishes, thoughts and prayers...and most of all, the great "Grow Baby Cells Grow" chants, cheers and dances. You all are very amazing...

Hope you all have a tremendous day...

Denise and Kyle

Friday, March 13, 2009 5:37 PM CDT

Day + 2

Hello from 708...

Last night was a bit better but still some issues. He continues to stay on oxygen around the clock, I make him due some of his lung exercises to help strengthen them yet it's hard when he is drugged up. I have to stay on top of it though, I'm a little frustrated for him.

I also talked to Dr. Giller today for a little bit. They have scheduled another echo for mid week next week. There is some weakening of the heart, they believe from the chemotherapy. It is there hope it will correct soon but they don't appear terribly concerned. I say "appear" because he also became noted today that they were VERY concerned about the transplant on Wednesday...! I told Dr. Giller I'm glad they didn't tell me that because I would have been a mess! He said, "you didn't gather that by all the tests?" I said, "no, I just thought you were being cautious, not worried!" He did tell me he feels much better today about things and has mentioned seeing improvement in Kyle.

They will unhook him from the IV pole this evening for a shower and a couple hours of hanging out time with his big brother Ty.

Certainly Kyle has two very serious issues lingering and I just pray they can improve on their own. This is such a difficult road to be on yet I am hopeful and optimistic today!

Thanks for the abundance of cards and gift cards sent to Children's Hospital for Kyle. Each one brings a smile to his face, although yesterday he was hoping one of them contained itch cream. Thanks Julie for bringing me breakfast this morning, I was starving. And thanks for getting the Spicy Pickle gift card, I know that will come in use. Thanks to those delivering meals to my family and Jen, taking care of Riley, praying, signing our guestbook and Facebook. Keep the prayers rolling...we are in no way out of the woods here.

Keep all the positive thoughts and prayers rolling our way, and I'd seriously love to see some of these "grow cell grow" dances I keep reading about!!!

Thanks for stopping in...

Denise and Kyle

Thursday, March 12, 2009 1:21 PM CDT

Day +1

Last night wasn't too much better with the potty issues. We were up every hour again but did seem to catch a few straight hours of sleep around 5 until 7:30 am. I wish that would clear up but wow is his tummy cramping and hurting terribly.

He threw up a round of morning meds and was in pain most of the morning. I wish I could take it all away.

Lung docs were in, they are going to run some tests on him this afternoon to see how is lungs are testing. They may also try different meds to see if they help at all. The important thing I need to do is get him to work on his lung exercises, just like when he has that virus...!

Education people came in today, we are going to attempt to get him doing some school work to help him mentally feel better as well!

I have to run, just started updating and my mom brought lunch in for me. Running to the parent lounge to eat...

I did add some new photos in the slideshows...enjoy!

More soon...

Denise

Wednesday, March 11, 2009 11:01 PM CDT

Day 0 (You are correct ML)...

The transplant was supposed to be at 11 am however at 10 am, it was determined that we would postpone until the afternoon sometime. Fluid was building up in his lungs and and his heartrate was fast. Dr. Giller ordered an Echo and a few chest xrays to see how he is doing and determine what might be going on.

After reviewing everything, they decided it was safe to proceed at 2:15. The actual transplant took place at 2:50 pm this afternoon and took about one hour to complete. For those that are unaware, a bone marrow transplant is similar to when Kyle receives blood. It was a small bag of baby cells that looked like blood and it infused into his line slowly.

This is what I know about the amazing baby donor...the baby was born in January of 2008 in Houston, TX. Which in itself was strange because Kyle has always been obsessed with Texas. We could never figure out why but he spent many years insisting we live there. So that was kind of a neat little connection in our minds. The cord blood was processed at MD Anderson in Houston. The blood type of the cord blood was type A . Kyle previous to transplant was B . We also decided it's always better to get an A than a B right???

He threw up around the time the transplant was finishing up but since then has done tremendous. His blood pressure went back up, fevers have been gone, and his oxygen levels have been better. He is still on oxygen and more concerns came about his lungs as they were hearing fluid build up.

A CT scan was ordered and Kyle took a little wheelchair ride down for some photos. I just received word that it is nothing viral and they feel it's not much to be concerned about at this point. They are certainly going to monitor him very closely and will continue to give him medications to "dry him up".

He has been soooo tired, yet he got on World of Warcraft (WOW) around 2 this afternoon and we finally pulled it away from him a few minutes ago. He seriously fell asleep while playing in the upright position, hand on the keyboard. He even threw up at one point with his face in the bucket as he attempted to continue playing. You know I hear many people have lost wives and jobs over this game, I am glad he has neither to lose at this point in time!

He is resting peacefully, which is AWESOME! Again, last night we were up every single hour with potty issues...he and I are both very wiped out!!! Ty is here tonight and we got him the key to the sleep room. He wanted to be with his brother and I also felt it was important for him to be given that opportunity.

I feel like I am typing on autopilot. I will get some photos up soon. I took many today and a few during radiation, his last chemo, and the transplant. Hopefully I will get some time to do that tomorrow.

Kyle is amazing! I am so proud of him, and there isn't a moment that doesn't pass that I don't take that opportunity to tell him so.

Thank you for all of your prayers guys, keep them coming as today was bearable for us, today I am hopeful and confident, today was a good day...I liked Day 0.

Nighty night from 708...

Denise, Kyle and Ty

Tuesday, March 10, 2009 6:59 PM CDT

Sleep was short lived around here. Last night, we slept from 11 to 12, 2 to 3ish, and 6 to 7 am. It was a looong night. He woke at midnight with horrible leg pain, both of his legs from the hips to the toes were tormenting him so bad. I've never heard him say on a scale from 1 to 10 that he was in a 10. He was screaming in horrible pain and crying like I've never heard. His legs were on fire yet hurt for me to touch them. He couldn't move them or bend them. The doctors came in to check him but just gave him pain medicine in hopes it would subside, and it did eventually.

We sat up all night to distract his thoughts from the pain he was feeling from the aches to the stupid catheter. We talked about ferrets of course. We talked about a vacation and things we want to do someday. It was more great bonding time for us, like we could get ANY closer at this point. I must say that I was terribly tired but sharing this time with him took all the thoughts of sleep away.

His very last chemo EVER ended around 12:30 am last night!

I tried to use the sleep room around 9 this morning but awoke to "knock knock knock". I thought it was the cleaning people but it was Jen, Kyle needed me and was screaming for his mommy. I jumped out of bed and came into the room to receive the news that they were going to beg to remove the catheter early. Kyle won, the catheter came out 3 hours early. This helped with much of his pain!

He continues to have accidents that he cannot control...I wish that would stop but we have a cleaning him down system pretty good now.

He looks puffy still. He is still retaining fluids but they continue to medicate him for that. He is actually sitting up in bed as I type. He is playing World of Warcraft which is always a great sign. He received his first IVIG treatment today and thank goodness he had no obvious reactions to it. It went over three hours and he did awesome. I begged and pleaded to God that he please not have a side effect for once in his life. It appears if there is a side effect to be had, he gets it. He did tremendous with the IVIG. I am told he will get that once a week for the next 4 weeks for sure.

His potassium was also low so he is currently getting that IV. He does have the night off...THANK YOU LORD!

We watched another few episodes of Heroes a little bit ago, I got a shower in (he is next), and I am thinking about dinner. I refuse to eat another Kashi frozen meal, mom brought in some new things to try so we shall see.

Thank you to everyone that has signed up on the Cure Calendar. Jen and the kids seem to be well taken care of. I worry about them, and gosh do I miss my kiddos and my home. Tyler is requesting to come in tomorrow as he misses his brother terribly. I know he is very worried about him...Jen will bring him in after school.

Thanks KimD for sending Kyle a gift card to Target, he lit up at the site of it. I love to see him smile. My mom also brought him in a new Webkinz which created another smile. I cherish the little whispers from him that he loves me. I remind him often that he is my hero as he shakes his head in agreement...he knows how I feel.

Not much else going on, we eagerly await those new tiny baby cells tomorrow at 11 am. One step closer to kicking cancers ass once and for all...

Denise and Kyle

Monday, March 9, 2009 7:15 PM CDT

Kyle is doing pretty well, I think. The catheter is still hurting him and that comes out at 1 tomorrow. His last dose of chemotherapy EVER (yes I am putting that out to the universe, it better listen this time) is tonight at 9 pm. His fever broke but I'm pretty sure that won't be the last one EVER. His blood pressure is good right now and he is sleeping.

He is bright red right now, I think from the chemotherapy. His face is swollen as he is retaining fluids, they are giving him meds to help resolve that. His eyes are red with blood filled spots, which I was told his also normal. He received a bag of blood earlier and is on around the clock medications. Someone is always in here taking care of him or his constantly beeping IV pole of assorted medications, fluids, or transfusions.

We watched the first episode of Heros earlier, although he fell asleep part way through. We are going to watch season 1 at some point.

I slept!!! They have an amazing family sleep room here. It's like a hotel room with no windows which is perfect. It's a first come, first serve basis room so I have to check each morning but I scored it last night. Mom stayed with Kyle while I crashed. I went in at 9:30 pm and didn't move until almost 8 this morning. I was afraid I'd wake in the middle of the night and run to Kyle's room...but that didn't happen. It felt great to finally sleep!

Thanks Nikki for the Starbucks coffee and bag of goodies for us. Thank you KimD, I got the gift card this morning...I laughed cause I started to think of what random thing I would use it on (certainly not myself) and then I read that I needed to spend it on myself! You know me too well! Thanks Aaron for the Chipotle burritos last night. I figured if I ate one of those, I'd stay full for a week...! Of course, as I type my belly is screaming!
Jen and mom, just a HUGE thank you as you guys continue to amaze me!

Kyle is snoozing so I am going to slip out and find something to munch on real quick...

thanks so much for all of the Facebook entries and emails, CB guestbook entries, love, thoughts and prayers...keep it all coming!!!

Denise and Kyle

Sunday, March 8, 2009 8:09 PM CDT

Goodness, this is so much worse than I expected. I don't know what I expected really but this is tearing me up from the inside on out. To watch him in pain and suffer just kills me beyond words. I hate cancer...I rarely use that word and actually believe it's a terrible word, but I HATE cancer. Nobody should ever have to be subject to such a terrible experience. I've watched Kyle suffer and be humiliated more in the last two days than I ever have. Granted I am without sleep right now yet I am angry and scared as well. He is an amazing little boy and as I tell him the few times he is awake enough to truly listen, I am lucky to have him as my son!

With that, last night was not good. He again spiked 105 fevers all night long, struggled with low blood pressure, loss of bowel control, lethargic, on oxygen, had a chest xray, an EKG, and many doctors and nurses in and out. No sleep...I just held him close to calm the shakes he had. And although he wasn't really conscious, I held him and reminded him that I love him and I need him.

Right now, he has had his last infusion of ATG, he just finished his Ara-c and started another chemo. He also had a catheter placed this morning for the next two days. He is sleeping really well but of course is still battling fevers. He continues to be on oxygen however. He isn't awake often but I do get an occasional smile and "I love you"!

I miss my other children terribly but right now I have to do this and I will. My mom is here tonight to sit with Kyle tonight while I attempt to wander over to the private sleep room. It's just outside the BMT unit and is available for this type of situation. I'm sure I will pass out hard, but once I wake up I will not be able to fall back to sleep. I will do my best to rest...!

Thank you everyone for your kinds words and wisdom in the guestbook. I don't have much time to do anything but care for Kyle right now, but when I am about to jump from the top of the 9th floor (kidding), I look to your amazing words to strengthen me! So thank you!

I have to go...praying for a better night for Kyle! I sure love that little boy...! This is so painful!!! By the way, have I told you all that I hate cancer??? If not, I do!

Denise

Saturday, March 7, 2009

Evening Update:

How does a mom of a little man fighting cancer deal with this comment tonight:

"I bet you can't wait until I die..!"

Kyle was angry he had to take a shower with his IV pole. His nose started bleeding because he was crying so hard and he was ANGRY. He is angry and he too is tired of this, I have gathered that and therefore took a few deep breaths with that comment hurled at me. It hurts, I know his reasons and yet it still hurts like a knife in the heart. I hate cancer, I hate this! Once he calms down, we are going to talk about this comment...I too have to think it over! I wish I could have said something witty at the time to diminish the sting but nothing came out of me, probably better for now!

Todays, ATG is all done...he is lying in bed with the shakes. First round of ARA-c is also done.

Tommy, life specialist is here to chat and calm the situation...

Thanks for stopping in,

Denise

Morning Update:

We are not having fun...! Our room wasn't ready for us when we arrived yesterday so we sat in clinic until his procedure at 11:30. I had a mental breakdown while he was sleeping from his procedure. The tears wouldn't stop...wow the reality just hit me in the face!

Kyle did great for his spinal tap and we finally were in our room at 12:30 (room 708). He was doing pretty well until the ATG (horse serum) was half way through. He gradually got worse and every side effect he could get, he did get:

Low Platelets - check
Dizzy - check
Headache - check check
Diarrhea - little check
Vomiting - check check check
Low Blood pressure - check
Allergic reactions - check and still check
Fevers - Check at 105

He was miserable at bedtime. Interesting enough, the ATG stopped at 1 am and he immediately got better. Fevers and vomiting gone, blood pressure and oxygen back to normal, headaches gone. Bad news, another round of ATG is one hour late (they don't have his proper dosage here, don't get me started) but another dose is coming.

Right now he has severe itching and rash. The Ara-c is running as I type and meds around the clock are going in. We are watching The Office and he is on his laptop playing World of WarCraft. I am going to see if the shower is available and will track down some food.

This is an adjustment with all of the restrictions of what we can and can't do, eat, say, touch, etc...

I keep reminding Kyle that this is it, he will feel worse before he feels better but this is it and we can do it, we will do it! We are staying tough, him more than me but that's ok too!

WBC - 4.3
HGB - 10.5
PLT - 80 (down from 145 yesterday)
ANC - 4300

ATG today and Ara-c. Horse serum (Antithymocyte Globulin) is used to help the body accept the transplant. Ara-c is our least favorite chemotherapy...not that we have a favorite - more fevers and vomiting are expected!

Have to run...thanks for stopping in!

Denise and itchy Kyle

Friday, March 6, 2009 8:49 AM CST

I am in a pretty big hurry as I am finishing up some laundry and packing things up, doing all of those last minute things before I enjoy my last real shower for awhile. Sorry Jen, my house is going to be a mess when you take over!

Here are just a few things before we head in this morning. I will put our room number on this website address.

Jen set up a website that allows you all to sign up and help out. She just put it together so I'm sure some things might change or be added but feel free to check it out and sign up to help. I believe you just register to use the site and then can wander the site and sign up for things:

Community: A Cure For Kyle

Web address:

http://www.lotsahelpinghands.com/c/612108/login/

A Cure For Kyle bracelets (picture is above) should be in early next week. We did order 200 to start with, contact Jen for more information (jenjoturtle@yahoo.com). All proceeds will be put into the A Cure For Kyle account at Bank of the West to help with financial needs during this journey!

Financial donations can be mailed directly to the bank or our home. If you need our address, contact myself or Jen.

Don't forget to join the bone marrow registry if you haven't yet. Donate blood or platelets (thanks Susie) directly at Children's Hospital. I know Susie donates for Kyle. All blood products that are used on Kyle come directly from Children's own facility. When you donate to Children's, it goes to Children's. You can even donate for Kyle, which is neat (Susie does this with her platelets).

Pray, pray, and pray!

I have to get moving...that's it for now! More later. Kyle will go inpatient at 9:30 am this morning, he has procedures at 11 am and let the chemotherapy begin.

Transplant is Wednesday at 11 am!!!

Denise and Kyle

Wednesday, March 4, 2009 10:57 PM CST

Today's two radiation treatments went well, or as well as expected. Our morning session was pretty good but a little bit longer due to the "boost" to his "boy parts".

We went to Children's afterwards and he received another two hours of hydration. He and my mom watched a movie as Jen and I got a few things done. First of all, the marital home is closing tomorrow after nearly two years. It's a bitter sweet thing as when we built that home, it was to be our 30 year home so to speak. Yet, it's also a part of the past and I am all about moving forward! So that house closes tomorrow and I had a few things to get done since I am not attending the closing. Jen and I also ordered 200 more A Cure For Kyle braclets. They should be in next week so if anyone is interested in purchasing one or wants to sell some, please let Jen (jenjoturtle@yahoo.com) or myself know and we will do our best to get them to you. They are just part of our ongoing fundraising efforts to help with living expenses and medical needs.

After the movie and fluids, we hit Burger King and toured the area a little bit to see where everything is located and what is available.

We arrived at our afternoon radiation appointment early, so we hung out for a little bit and did some people watching. I started to get another migraine after the morning session, luckily I found some medication for it in my purse and nipped it before it turned into anything bad. I was exhausted and tired though...probably more so than Kyle. He just amazes me as he keeps going and going. He went into his afternoon session and said he better hurry up and get back to me because he knows how much I worry about him. I love that kid!!!

Our afternoon session was running very late so we were extra tired and frustrated. Before heading home we met Julie W. so she could hand off a meal to us. Thank you so much Julie...it was incredible! Not a bite left over either as Jen and I both had two plates full...and the ice cream cupcakes, none to spare! Oink oink!!!

Thanks to my wonderful neighbors as well. They have sent us meals continuously over the last few months and I appreciate it so very much. They have spoiled us since we moved in here and I appreciate having moved next to such wonderful people.

Thanks Claire for taking Riley again this morning, afternoon and evening. Your family is like a second family to her and I can't thank you enough for all that you do!

Thanks Nikki and family for the gift card today, Thank Mary Ellen Mantz for the Sports Illustrated Football Book. I know we've gotten more and my brain is terribly fried right now. I keep all of your cards and gifts in a pile to ensure I can get thank you's sent out in the near future.

Tomorrow will be another radiation at 8 am with a "boost" to his "boy parts", a run over to Children's for fluids and counts, and back over to radiation at 3.

Friday, his appointment is at 11 am for a "sleepy room" (spinal tap and bone marrow aspiration) and then our admission to Children's for transplant.

Kyle continues to amaze me each and every single day. I am tired and run down...yet with his strength and determination, we will get through this!!!

Heading to bed, keep those prayers and thoughts rolling our way! Thanks for checking in...

Denise and Kyle

Tuesday, March 3, 2009 7:42 PM CST

Wow, I feel like we were in there for days! Thank you Susie Jones for having a wonderful meal prepared for us upon our arrival home. I just showered and am ready to drop on the couch, however...I felt it important to update you all that have followed us and worry about us.

We arrived just a little bit late but Kyle was ready to go. He did AMAZING! He was so strong and I felt like he worried about me terribly. I didn't do as great as I was on the verge of running to a trash can. Without Jen and my mom, I probably would have been a mess...I know I would have been. At one point, the young man who took Kyle from me came up behind me and terrified me. He said, "is Kyle inpatient right now!?" I freaked, "no. Why? Is something wrong? Should he be?" He reassured me that he was just checking because if that were the case he would have to report to the inpatient unit. I thought I was gonna lose it! After a few minutes of reassuring me that Kyle was doing great, my nerves calmed a little bit. I was just so ill and nervous.

He came bouncing out after 45 mintues to make sure I was holding up ok. We then walked over to Children's so he could get two hours of IV fluids. His counts were good so he did not need any transfusions today. Thanks Jen for bringing the Will Ferrell dvd, if you must know...Kyle put Will Ferrell on his list of 6 people to visit him (although I did inform him that neither Chuck Norris or Will Ferrell would probably be able to visit him)! So in their place, he added my dad...unless you all can contact Churck or Will?!?

We finished up at clinic and went to lunch at Mac Grill, followed by a quick trip to Barnes and Noble and Jamba Juice to burn some time.

3 pm, we were back in for his next round of radiation. Again he did amazing!!! No complaints from him until we returned home. He started complaining of a headache which I gave him Tylenol for. He just started saying his throat hurts "bad, really bad!" I hope it diminishes so he can sleep tonight and rest for tomorrows next two rounds!

I am exhausted beyond words so I am going to lay down for a bit. Just wanted to update you all on todays radiation treatments.

Jen worked a little bit on a "Care page" which will allow others to sign up to help our family during transplant. I'll give you the link when it's up and running, which should be soon!

Thanks for stopping in...hopefully tonight and tomorrow will go smoothly!

Denise

Monday, March 2, 2009 9:51 PM

Kyle had his appointment this afternoon. I have no blood counts from it just yet however we did talk about any last minute questions for radiation and transplant.

I have to give him zofran and steroids 1/2 hour prior to his appointment. The session is 20 minutes and then we head back over to Children's Hospital for several hours of hydration and any blood products he might need. We return to radiation at 3 for his afternoon treatment. After that we can go home. Repeat on Wednesday and Thursday. Our appointment on Friday for admission is at 11 am.

I think Kyle did fight back tears when they talked about the process. I don't think he liked the idea of a catheter for 48 hours on Sunday to Tuesday. He did tell me tonight that he doesn't think transplant will be "that bad"! Way to go Kyle...he is ready to fight!

Me? I'm sick to my stomach and the anxiety is tearing me up inside. When I am at Children's, I am ready to fight and kick cancers butt...when I am home, I want to vomit and bury my head under the covers! The good news is, I believe I too will be ready to fight once we get in there!

I know tomorrow is going to break my heart. I know I will have a breakdown at that horrible radiation facility while they are zapping my child full of radiation and destroying the marrow in his little body...that is going to kill me beyond words. I am prepared!

Jen and my mom will be there with me and for that I am forever grateful. Thank you Claire for taking Riley this week to help ease the burden. And thank you to my dad for taking care of Tyler.

Thank you Julie W. for scheduling Wednesday night to bring us dinner. I appreciate that so much as I am certain I will not be mentally ready to deal with home issues this week, or for awhile!

Thanks for the gifts and cards and giftcards everyone. We appreciate the thought and help so much. Thanks to those that have donated to A Cure For Kyle as well. You all help me more than you will ever know and I appreciate it as you keep my head above water day in and day out!

I am a mixed bag of feelings and emotions right now as we prepare for this fight. We can do it, and we will...we just need you by our sides!

I will do my best to update tomorrow once I get Kyle settled back in at home. Please pray for a smooth day...I can't handle much more than that!

Denise

Monday, March 2, 2009 9:51 AM

Phew...deep breaths...this is the week...!

We had a pretty good weekend, I ran around like a chicken with my head cut off and Kyle played, played and played. Just as it should have been right?!

I had list after list of things Kyle and I would need for transplant, what Jen or mom would need for the house, what the pets will need, what the kids might need...etc! I only forgot a few things and will need to make one more trip, forgot toilet paper and dishwasher soap.

I have my "To Do" list stuck to the fridge as well. Ducts need to be cleaned, filters changed, carpets deep cleaned, dogs groomed, dogs shots caught up, deep clean house, fridge, Kyle's room, bathroom, etc...

Need to get Jen access to cash to maintain my house. Need to line up dinners for this week and the future for my kids while I am gone, blah blah blah...

Garbage has to go out today, yard cleaned up, and on top of it all, the hot water heater is leaking all over and no longer works....drum roll, which means no showers this morning or until it is fixed. But wait, have to get to the hospital for a 3 pm appointment! Oh my...can you all say, "grumpy girl"?!?!

My head is spinning...just like the exorcist! I did find a way to make coffee this morning as I ALSO forgot coffee filters at the store! I need someone to take care of me!!!

On a happy note, we had a surprise party for Kyle last night at BJ's Brewhouse. He had no idea that I had a group waiting for him. We had a cute CCKMA (Cancer Can Kiss My Ass) cupcake cake in the shape of a cancer ribbon for him, balloons, presents, friends and family. He had a plate of nachos as big as him...(note to self, Jen...I owe you for the cake)!

Many pictures were taken, I need to get some from my mom and Jen as I think they got some better ones than I did. I will post them when I weed through them.

Today, we have our appointment at 3. I do know he is getting Ara-c. Kyle is also working on his visitor list for transplant. He can only have 6 people on his list (without me that's 5) so he is making his decisions wisely. I am putting my foot down on further restrictions until there is some count recovery for him. He has to submit his list Friday upon admission.

Please send us tons of prayers...today did not start out so smoothly for me!

If anyone would like to bring meal this week, that would be greatly appreciated as I am certain after radiation this week...I will not want to cook. You can email me if you are interested, I'm most concerned about the kids eating really.

Jen Jones will be my contact once again, she can be reached at 303-875-4054 or jenjoturtle@yahoo.com. She might need some help these next few months as well!

Thanks so much...I sure hope my day improves!

Denise

What you can do to help:

1. Pray
2. Donate blood or platelets
3. Register to be a bone marrow donor
4. Send gift cards (grocery, gas, dining, target)
5. Financial donations to A Cure For Kyle (info above)
6. Meals for Jen, Tyler, and Riley

Friday, February 27, 2009 6:20 PM CST

TRANSPLANT IS A GO...!

Just got word late this afternoon that Kyle's nasal wash came back negative and transplant is a go! We will meet with BMT (bone marrow transplant) at 3 pm on Monday. Kyle will get radiation at 8 am Tuesday morning, 3 pm Tuesday afternoon...then again, Wednesday and Thursday. He will then be admitted on Friday. Here is a better road map for those that are following:

Day -9 (Monday) - IT Ara-c in clinic
Day -8 (Tuesday) - TBI (total body irridation)
Day -7 (Wednesday) - TBI
Day -6 (Thursday) - TBI
Day -5 (Friday) - IT Ara-c, Anti-T-Cell Serotherapy
Day -4 (Saturday) - Ara-c - Anti-T-Cell
Day -3 (Sunday) - Ara-c, Cyclophsophamide, Anti-T-Cell
Day -2 (Monday) - Ara-c, Cyclophosphamide, Start Cyclosporine A or Tacrolimus
Day -1 (Tuesday) - Continue Cyclosporine A or Tacrolimus
Day 0 - UNRELATED UMBILICAL CORD BLOOD TRANSPLANT

Counts from Wednesday are as follows:

WBC - 2.8
HGB - 11.7
PLT - 214,000
ANC - 1700

Oh my gosh...the time is now! I am not sure how I feel right now other than ANXIETY!

Ways to help:

Pray
Donate blood or platelets
Register to be a bone marrow donor
Gift cards (gas cards, Target cards, grocery store, food)
Financial donations to A CURE FOR KYLE (info above)

If and when Jen and I get that calendar going, either she or I will keep you posted. This weekend is going to be filled with preparations! I wanna barf!

Thanks for stopping in, enjoy your weekend...I do realize it will be our last one home as a family for a long time!

Denise and Kyle

Wednesday, February 25, 2009 10:08 PM CST

Good evening!

Today went pretty smooth, yet busy. Riley stayed home from school again today. She missed twice last week and twice this week. The one day she did go this week, she was in the nurses office. She keeps complaining of a "tummy ache".

Ty had a physical and tetnus shot scheduled at 11 am, so I drug Riley along too. Our family doctor is amazing and saw all three of us today. Get ready for this one...sweet Ty is 181 pounds! Oh my goodness, I was surprised!

Riley has Irritable Bowel Syndrome, or so I call it..."I eat too much junk food and my tummy is not happy!" I also think she has a case of anxiety given what is coming up for our family. It was nice to have our doc tell her that she needs to ease up on her sugar cravings!

I also had him take a peek at my knee. You know the one that Striker tripped me in the middle of the night and I crashed into the corner of the wall...that knee! Yes, it still hurts terribly and I still cannot bend it back. Kyle accidently knocked it the other night while in bed and I almost jumped throught the roof. Anyhoo, family doc thinks that the knee cap jammed into my cartlidge and bruised everything inside. And being old and all...it just takes longer to heal. Hmpf!

Then we were off to Children's for Kyle's bmt appointment with Dr. Ralph. They drew blood (no counts back yet) and did another nasal wash (no results yet). He did a head to toe check up on Kyle and asked if we were ready to rock and roll!? The plan is if the wash comes back negative, we head in Tuesday morning for our first of six radiation treatments. We then would get admitted next Friday. Yikes!

I also signed some research paperwork. I did voluntarily enroll Kyle into furthing research for childhood cancer and transplants. He also signed a few forms in hopes of helping those who will walk in our shoes someday.

Dr. Ralph also mentioned that we have to be back at the depressing, make Denise cry, radiation center tomorrow morning at 8 am! Yes, 8 am! They want to do a practice session with Kyle...probably to give him a heads up of what to expect and calm his nerves a bit. Hmmm...wonder if it will help me or cause more tears to fall???

I will have more results hopefully tomorrow but it does look like next week is a big, fat GO! Part of me is ready too!

For those that have asked how to help us. I haven't done my planning yet as far as needs with family. I am still thinking of farming the dogs out for awhile but not sure yet. Jen is thinking of putting together a calendar (suggested by the Kent family) to assist us in miscellaneous things we might need help with. And as always, gift cards are huge for gas, groceries, Target, restaurants. We also think financial donations to A Cure For Kyle will help alleviate some of the financial stress during transplant. Our main goal is to get Kyle better! I think everyone would agree to that. If anyone wants to pick a playdate day with Riley that would be helpful as well.

I'm starting to prepare...still can't believe we have to do this, yet I know with all of me...we will! I just need you all to help me!

I have to run as it's time to give the kiddo's big, fat, sloppy kisses and tuck them in for many sweet dreams!

Thanks for following our journey with us!

Denise and Kyle

Monday, February 23, 2009 9:48 PM CST

Hello!

I returned home from the gym this morning and immediately called Dr. Quinones to get some answers and ideas of what our little "game plan" is. He returned my call pretty promptly.

Kyle's nasal wash did come up negative from Thursday so we will do another wash on Wednesday to get our two negative results (or so we hope). If he is negative again Wednesday we will pull him from his oral chemotherapy in preparation for transplant. The xray and CT from Thursday show that his lungs are "nearly resolved".

We will meet with the bone marrow team on Monday, have radiation Tuesday, Wednesday, and Thursday next week and be admitted on Friday next week.

I know Kyle is ready to get going with everything. His anxiety is tearing him apart and I guess I don't really blame him. He has slept with me the last 5 out of 6 nights....my heart goes out to him!

Thanks Wayne Gold for the call today with offers to help. As I told him, now that we are moving along soon, I will sit down the rest of the week and get myself and this house organized. Nancy, I will look over the "lists" you emailed me as well. My heart is racing...I need to schedule some Denise time and some mental time this week. I now need to mentally prepare myself for this!

I'm going to go clean up the kitchen and get the kiddo's ready for bed! Thank you so much for the cards, donations, well wishes, prayers, thoughts, kind words, phone calls, text messages, love, support...shall I go on???

Thanks for stopping in, that's all I have for now. All of the kids are doing pretty well, for the most part anyway. I think we are all tense and scared really...guess it's time for me to hold a family meeting!

Hugs to each and every one of you...

Denise and Kyle

Sunday, February 22, 2009 4:23 PM CST

Sorry for the delay in updating...I'm not sure where time seems tmo fly by too, but as you all know...it does!

Thursday was a very long day once again. We got to the radiation center, which is next to the Children's Hospital. I wasn't sure what to expect at this appointment but we were there for three hours. The place was terribly depressing as it was filled with so many people fighting cancer. There were young moms, grandmothers, grandfathers, men, women and of course children.

We had our first part of the pre-radiation appointment with the actual Doctor. Kyle did not want to leave the room for this meeting yet I sensed they kind of wanted him to. I have really left many decisions up to Kyle and therefore allowed him to stay. He is no longer a baby and I certainly feel like now we are a TEAM. We discuss things, share things, and brainstorm together. He is old enough to understand and be a part of all of this, it is his body and his life.

They went over all the short term and long term side effects. I was told they will use the lowest dose of radiation on him and he will also have radiation to the testes. They informed him of what to expect while getting his treatments. The treatments will be 20 mintues a day, twice a day where he will lay on his side in a room all alone. He will do this for three days straight. He may get nauseous, sleepy, redness of the skin, and possibly diarrhea. Long term problems could be scarring, cancerous tumors, delayed memory or loss of memory, skin cancer, and feritlity issues to name a few.

After the meeting we had to wait for the radiation area to be open so we can tour it and they can measure him for lung protection and a few other things. I knew the radiation area would upset me because of how others have described it. There are two rooms for treatment with large metal, "vault like" doors that slide open and closed. THey have monitors outside of the room to watch as treatement is administered. There was a little 3 year old boy in at the time we were there, I quickly recognized who he was. They had him under sedation so that he wouldn't move during treatment.

They took Kyle and had me wait in the waiting room. The deep breaths weren't enough to hold back the tears. The first little trickle came out and then they wouldn't stop. As I dug for kleenex out of my purse, I felt people begin to stare at me yet I could not stop the tears. I did not like this appointment at all, it was very difficult for me emotionally.

Kyle came out of the back and asked why I was crying. I didn't want to say anything in the waiting room but when we got out of there he said that was so sad to see those people with cancer. I cannot believe this boy. He feels so sad for everyone else and yet doesn't feel sadness for himself. I think that's very admirable and great of him.

Once we got back to Children's I felt so much better. I did have a hard rest of the day as this is mentally tearing me apart. Kyle had a CBC and nasal wash in clinic. We were then off to the stress test. They hooked him up to lots of wires all over (pictures above) and then checked his resting heart. He then climbed onto the treadmill and walked uphill for 10 minutes, still hooked up. They then had him lay down quickly and check his heart again. This appointment seems pretty simple.

Then we were off to CT scan and xray. They rechecked his chest and lungs for the virus to see where we stand. Again, pretty quick and easy yet still a long day for us.

So here is what I know today:

Counts are as follows -

WBC - 3.4
RBC - 3.59
HGB - 11.5
PLT - 248,000
ANC - 1823

Nasal wash did not have enough cells in it so we did not get a result on that. Dr. Quinonas was out last week so there were no results on the CT or Xray. Radiation had Kyle down for Tuesday, Wednesday, Thursday next week with an admission on the 27th however I do not believe that is correct as we are still awaiting a negative result on the lung virus. I am guessing I will hear more on Monday as what the plan of attack is.

I realize I am not mentally prepared for this. I feel as though I am still in denial or shock that this is going on. Kyle slept with me 4 nights last week. On the 4th night he told me he is feeling anxiety about the upcoming transplant. While we both welcomed a little break, the anxiety is undeniably difficult. It's like waiting for that big storm that is going to roll in yet you don't know exactly when it will hit.

We still are working on our schedule for transplant. I would like to come home a few nights a week to see the other kids and still be a mom to them. I have made no arrangements for Riley and need to do that as well. I think my mom, Jen, and I are going to sit down and calendar things out. I also need to figure out the financial end of it all, as I will have to support two situations for an extended period of time...including having sufficient funds for Jen to provide for my house, my kids and my dogs. My mind is on overload to say the least and I am scared and I am tired. I KNOW we can do this and we WILL do this...I also know it won't be easy. I'm tired of seeing him hurt, I hate seeing him suffer and be in pain and there isn't a single thing I can do for it, I can't take it away or make it go away. AND that is what pains me...to watch my child suffer and have no explanation for him as to why he has been chosen to endure this. He's tough and he's a fighter! As a team, he and I will do this without a doubt in my mind!

OK...I think this is a long update and I am ready to watch a little bit of NASCAR.

I hope you all are having a great weekend. I have had several requests on providing information to join the registery so I will get that out in tomorrows update. Hopefully I will have heard more on the status of Kyle's lungs as well.

Thank you so much for your thoughts, prayers, financial donations, cards and gifts. We love you!

Denise and Kyle

Wednesday, February 18, 2009 8:55 AM CST

Happy hump day...

Things have been very quiet around here. Kyle is still taking his oral chemotherapy each night, still taking fluconazle for the lung virus, and taking his yummy calcium chew thingy. His mood has been very good and he continues to amaze me and inspire me. I don't know how he does it, yet I wish I had one ounce of his outlook within myself.

Tomorrow is a day filled with appointments for Kyle. Radiation meeting, clinic appointment, and stress testing. I think it's another day where I drop the kids off at school and we won't be home until dinner time. I believe it's the last of our appointments until radiation and total body irridation followed by our admission for transplant.

I've had several people continue to ask me how they can join the bone marrow registry. There are several ways to do so, locally you can stop into Bonfils and request to do so, you can go to marrow.org and request a kit be mailed to you, attend a local drive, or contact dkmsamericas.org to have a kit mailed to you. There are many options it's just a matter of taking the time to do it.

I'm hanging in there myself. Sorry KimD, I didn't make it to see He's Just Not That Into You yet. I have a few I want to see but think maybe I should wait until they come out on DVD and I can watch them during transplant. I am on a rollercoaster ride. I have no idea what mood I will be in from one minute to the next and it's rather scary. I am trying to busy myself with the gym and "nesting" for transplant yet I feel a bit withdrawn and to myself. I hate feeling this way and it's not on purpose, I just have no idea how to handle things right now and actually am unsure if I am capable of handling anything. So with that, I am just in my little cave, sitting tight...

Thank you for checking in on us, we are enjoying our time together as a family, enjoying time being home, and preparing for what lies ahead of us! Please continue to pray that Kyle's virus heals and he stays in remission. Pray that I gain some strength mentally as I fear I am going to fall apart!

Denise and Kyle

Sunday, February 15, 2009 6:56 PM CST

I hope everyone is having a great weekend and got to enjoy time with loved ones, including Valentines Day. I am on the fence with Valentines Day these days as I feel it's important to tell and show loved ones each and every day how you feel. Life is precious, life can be short...!

Our Friday appointments went well. I was incorrect in my posting as our appointment was with neurology. He had a few hours of testing, like a day of school. He tested very well and they appeared pleased with the results. They tested in math, reading, writing, and a few others areas. They will retest him again one year post transplant to see how he is. They reassured him again that his education should not be a high priority for his little anxiety filled mind. I think that helped him feel better.

We then went to clinic. While Kyle was being evaluated I ran up to oncology to talk to Dr. Quinonas. He decided we should do a CBC (blood counts) and get him on some oral chemotherapy to keep him in remission while this virus clears up. The concern is that the chemo could hinder the healing process but we feel it's very important he stay in remission first and foremost. Soooo...to the 7th floor we strolled after his first appointment.

His blood was drawn and we attempted to head out the door. I ran into Kim (Kai's mom). Not sure I have talked about them but Kai is a relapse AML. He is a 4th grader but was just admitted Friday to get his transplant. He was the fortunate one to meet Will Smith when he came to Denver so he always posts that photo outside his room, as would we!!! I talked to Kim and asked her how she was feeling about the admission and trasplant, as expected she too is a mental mess.

After talking to her, we walked by the Denver radio station Alice. They were doing a fundraiser over the air to raise money for Children's Hospital (photos above). Kyle though that was pretty cool. And I ran into another great gal, Catherine and her son Mason. Mason is in 1st grade and relapsed with ALL. They were being put over the airwaves to share their story. Mason is just full of energy and fun, I adore him so much!

Finally, we went to the Walgreens (inside the hospital) to pick up the oral chemotherapy. They put him on oral 6TG and no methotrexate. He takes one pill 5 nights a week and 2 pills 2 nights a week. His counts were also AMAZING! What a sigh of relief.

That was a full day...9 to 2. We were grateful to get home and enjoy some more time away from Children's.

Our next appointment is another full day on Thursday. We meet with Dr. Liu to go over radiation at 9 am. Back to clinic at 1 pm to do another test to see if his virus is still positive and then at 2 pm he will do the stress test.

Dr. Quinonas and I discussed the delay. It may be up to 3 weeks but hopefully will not be that long. I can no longer pinpoint a date for our admission, could be February 27th or March 6th. I believe he still has to have 2 negative cultures on the virus prior to us proceeding. I feel comfortable holding off until this virus clears. If he can't head to transplant with a cavity, he certainly should not proceed with a virus in his lungs!

Please pray for Kai as his transplant should be on Tuesday. I have to run and get my kiddo's some dinner.

Thanks for stopping in...

Denise and Kyle

Thursday, February 12, 2009 11:08 PM CST

Hi again...

Kyle is doing really well. Me? I am on Day 3 of being a raging, not nice, moody, cranky...biotch! I don't know why and I wish I could fix it. I want it to go away before I start losing some friends actually. I'm still taking my medication and I'm still battling headaches. I'm working out and trying to avoid people, maybe I should carry a sign on my forehead that says, "Caution: Does not play well with others!" Stress? Fear? Concern? The Unknown? Transplant? I don't like any of it...

We are heading back to Children's at 9 am for a Neurology appointment. That's it for our calendar tomorrow, I will keep you all posted!

Pray for a kinder, gentler Denise and great health for Kyle!

Us

Wednesday, February 11, 2009 12:25 AM CST

Hey gang...!

First of all, added a few more photos to the pretransplant slide show from the GFR day and yesterday. His eye appointment when well and everything is healthy and normal.

Next appointment is Friday at 9:30 to Neurology. After that, I have Thursday, February 19th at 9 am. We meet at the Cancer Center (next to Children's) with Dr. Liu. I believe this is our radiation meeting. We will then head back over to Children's at 2 pm for the stress test. I also believe transplant will do another nasal wash to determine if he is still testing positive for Human Metapneumovirus.

If all goes as planned. Kyle will begin radiation - TBI (total body irridation) February 24th, 25th and 26th with us heading inpatient on the 27th. Transplant will be March 3rd.

Geez...wonder why I got another migraine yesterday afternoon while strolling through SuperTarget. I didn't throw up this time although I wanted to. I think I caught it in time by rushing to the migraine aisle and tearing open a bottle to stop it in it's tracks. Yesterday was NOT a good day for this girl...phone was off at 6 pm in fear I would not be nice to anyone that attempted to call me. I do feel better today but not 100 percent yet. Took another migraine pill this AM in hopes to deter anything else that might be brewing!

Thanks SeanD for chatting with me on Facebook yesterday. Thanks to my brother Ron and his wife Rachel for the cute card and wonderful SuperTarget gift card you all sent. We appreciate it so much. Thanks to the Wada family in Vegas for the cute Valentines Day card you sent Kyle.

I am off to get some pretransplant things taken care of. My "to do" list is out of control and I keep putting it off...

Please keep those prayers rolling our way! I think I am beginning to mentally break down a bit!

Denise

Tuesday, February 10, 2009 8:25 AM CST

Good morning...

Yesterdays testing for Kyle was pretty easy and boring, however I do not like entering a room that has radioactive written across the door. Nor do I like the word "nuclear" being used when talking about my young child. What in the world are they injecting in my son? Is it really that necessary? And wow does the reality of this all make me angry at times.

Kyle and I arrived at radiology at 7 am for his GFR - Kidney function testing. Funny we can't arrive on time for a 10 am appointment or even an 11 am yet we were prompt for our 7 am. Although, I won't describe what we looked like when we arrived or as we were slumped in chairs reading magazines to stay awake.

So they injected my cute boy with "nuclear" something or other and checked his first blood level at 7:30 am, second one at 8, 10:30 and the last one at 12:30. I do have some pictures to add to his slideshow above.

This morning we are heading to the eye doctor for his next appointment. The only others I have written now are Friday to cardiology and he has to do the stress test still.

I did not get a chance to talk to Dr. Quinonas about the reschedule of his transplant, or the additional chemo to keep him in remission until then. I don't know when they will retest him for the virus either. Guess I have a few phone calls to make today.

I'm not sure how I am feeling or what I am thinking at this point. I still feel sick to my tummy often, like there is a butterfly fluttering around in there at odd times throughout the day. The kids are all doing pretty good and are certainly enjoying time together as well as being home. It sure feels good to be a family and have that closeness around here. With these kiddos, I feel like we can accomplish so much together.

Need to give a shout out to Cyndi and Jax in NY for the bone marrow drive they just held. Thank you girls, again, for holding a Pay It Forward Drive for Kyle. Thank you to those that attended and joined the registry. And thanks to the many who sent me emails or Facebook posts that you too ordered your kits and joined the registry. That means so very much to me! I cannot stress enough how important it is to me that EVERYONE be on that registry! You just never know when you might be provided the opportunity to give the gift of life, to give a family the HOPE they are hanging on to and needing. So thank you...!

With that, I have two children who are late getting to school...wanna guess which two!?!?! Then Kyle, Nan and I are off to the eye doctor appointment.

Please continue praying for Kyle and all of the sweet kids, babies, and grown ups who are battling cancer! CCKMA!

Hugs from a very quiet house that should not be quiet but full of crazy, frantic, children getting ready for school...

Denise

Saturday, February 7, 2009 11:33 AM CST

Transplant has been delayed...due to the issues with this lung virus that he had a few weeks back and him still testing positive, we will push it all back.

Talked to Dr. Quinonas a bit yesterday and it was decided it would be in Kyle's best interest to hold off. I agree. I do not want him with no immunity and that hanging over us, I fear it would be a very bad thing.

Dr. Q will talk with Dr. Albano about possibly doing a maintenance chemotherapy until things clear up. My guess is they will monitor his lungs and proceed when safe!

I should know more next week...enjoy your weekend!

Denise

REGISTER AS A MARROW DONOR

Sunday, February 08, 2009

9:00 am � 1:00 pm

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666 Albin Avenue

Fr. Shanahan Hall (accessed through back parking lot)

West Babylon NY 11706

Before you sign-up as a bone marrow donor, it is important that you understand your commitment and check your eligibility.

*** You must be between the ages of 18 and 55 and be in good general health.

You will be registered in the National Registry (NMDP)

YOUR INFORMATION IS CONFIDENTIAL * NOBODY WILL BE TURNED AWAY FOR THEIR INABILITY TO PAY

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If you cannot attend or do not live close to the drive, PLEASE PLEASE PLEASE contact DKMS to have a kit sent by mail directly to you! It's so simple to do and you might be that perfect match for Kyle!!!

Thursday, February 5, 2009 11:23 PM CST

Today wasn't nearly as stressful for some reason. I went to Riley's conference this morning and was so proud of how she is doing in 3rd grade. Part of me had to hold back a few tears for a couple of reasons. I was terribly sad that Kyle does not get to be "normal" and have the opportunity to go to school, learn and excel. I was also a bit sad that Riley is growing and becoming such a great young lady. Her poetry and writing are so amazing. I am so proud of her and yet sad that I too feel like I am missing out on some of her accomplishments as well. So hard to explain and probably hard for many of you to understand...! Needless to say, she had a great conference and chose a few reading books from the book fair.

She then went with her buddy Taylor for the afternoon as she was totally miserable at all of the appointments yesterday. Thank you Claire for coming to get her and also having her spend the night this evening. We are working toward that so we have more options during transplant. I know the Gilmores want to help out and just adore Riley. So again, thank you!

My mom, Kyle and I were then off for our 12:30 appointment with the social worker. It was a rather quick, touch base, kind of appointment. I am looking at a few financial aid options with some organizations to help with fuel costs and medication costs.

1:15, time for lab draws with Irene. She took another 4 large tubes of blood and off we went to meet with the dietician.

We met with her for quite awhile. We discussed his current diet and made some current changes accordingly. She felt he needed to up his calcium intake which did not surprise me in the least. And we also feel he should increase his fruits and veggies a bit. We did agree that we will juice 4 to 6 ozs of juice with a veggie once day for him.

We also discussed some things around the home. I have to have all carpets steam cleaned prior to coming home from transplant. As well as the dogs washed once a week, which might be difficult. I am thinking about farming out the dogs to simplify things as it appears there is a whole list of items I will be doing on a regular basis around here.

When that meeting wrapped up, we headed down to grab a few snacks prior to the Echo and EKG. Those all went pretty smoothly and quickly. I think the EKG was all of 30 seconds which surprised me.

I delivered the results up to Dr. Quinonas and away we went. He did also confirm with me that Kyle tested positive with his last nasal wash for that stinkin' virus. I am beginning to wonder if delaying one week might be smart...no immunity and a lingering serious virus in the lungs does not sound wise to me, although I am no rocket scientist either.

A HUGE thank you to The Church family in Delta, CO for the card and Starbucks gift cards. I think we may have Kyle try that frappachino you mentioned. Thanks to Coach Kaufman for the neat Denver Broncos Rubik's Cube, we have to admit we have not seen one of those before. Thanks to the Goulettes in Quantico, VA for the large box of miscellaneous goodies...that had many neat things to keep us busy. Thank you Stephens family for the book, candy, and Walmart gift card. We appreciate your thoughtfulness. Thanks to The Espinosa crew for the book, The Great Physicians RX for Cancer. And to The Kaufmans in IN for Battlefield of the Mind, another book I look forward to highlighting and reading! Thanks Kate for the cards. And a shout out of thanks to those who have made financial contributions to A Cure for Kyle as the medical bills are rolling in and as we head to transplant with so many "extras" that we need during.

Tomorrows plan is a 1:00 pm appointment back at Children's for a stress test. I will do my best to get some photos again!

I am one sleepy girl who is heading to bed. Thanks for all of your words of encouragement and support. Keep those prayers coming as we inch closer and closer to transplant.

More tomorrow...

Denise and Kyle

Thursday, February 5, 2009 9:29 AM CST

I cannot see straight as I feel like my head is spinning and I want to toss my cookies (that is if I had eaten any cookies)! I have this constant lump in my tummy and the feeling of wanting to rush to the closest potty and hurl. My face has turned into a 16 year old's face, although the stress wrinkles are accumulating...! I feel like I am going non-stop and when I do catch a break, I want to crawl into bed and throw the covers over my head! This is all so crazy! There is so much to think about, so much that can happen, so much to ponder and read. I sometimes wonder "would it be easier if I weren't a single mom?" I don't think so, I am who I am and I know that the weight that I carry about this cancer journey is something I tend to deal with alone. I put on that happy face for others but can feel the stress and concern every moment of every single day. So anyway...we have another full day, guess I better get you all the low down from yesterday!

9 am dental appointment - all is good, teeth look great

1 pm Child Life specialist - gave us the low down on toys, what to bring into the room and how to bring it in the room. Note to everyone, if you send packages, must be new items only and please do not gift wrap (germ potential).

1:30 pm BMT Coordinator - Took a tour of the Transplant Unit and one of the rooms. I was surprised there are only 7 rooms in transplant but I do know the docs keep the patient ratio low. The area is very sterile and so much more quiet. Each child has decorated their door, now we are thinking of what we would like to put on Kyle's door. We were also told again that we must compile our list of 6 visitors allowed in BMT. We are working on that and I certainly am taking Kyle's thoughts into consideration.

2 pm - Pulmonary Dept - This took two freaking hours and I am certain it didn't need too, they were just terribly slow. Kyle's results were all normal. He had to do some breathing into tubes I guess. I did not go back with him. Their BIG concern is this freaking virus he ended up with. It's such an unknown thing and it does raise some concerns. They did inform me that his nasal wash yesterday was still positive. They aren't sure how long the virus will linger. Looking at Kyle, they feel like he is doing incredible. This concerns me...I wish this whole lung virus could have been avoided as I think it would calm my nerves a bit. Heading into transplant with a lung virus is not a good thing. They will continue to research and discuss it...still think there could be a possible one week delay in transplant.

Todays agenda:

10 am - Riley's parent/teacher conference

12:30 pm - Meet with Social Worker

1:15 pm - Lab draw

1:30 pm - Dietary Consultation

2:30 pm - Echo

I was able to give a stool sample yesterday, we are still waiting for Kyle to offer up a fresh urine sample.

That's it in a quick nutshell. I am taking pictures along the way and will post some soon, when I have a moment anyway! Have to refill the coffee cup and get moving...

Thank you so much for all of the strength and love you guys send to us. Right now we are in "go mode" but I need to sit down and schedule out how to handle BMT and read lots of documentation.

Keep praying...want those lungs to clear, they are making me nervous!

Denise and Kyle

Tuesday, February 3, 2009 10:46 PM CST

PHEW...now I know what they mean by bone marrow work-up! I am mentally exhausted and have so much more to do. I got a glimpse of the rest of the calendar and oh my goodness, I am tired just looking at it.

My mom, Kyle and I arrived at Children's a little bit late, 9:45 am. We were given a nice little "pee cup" and some wipes as we checked in. Surprise Kyle, guess what you get to do?!

Kyle was weighed and I was so ecstatic to see he gained weight. I have been trying to feed him lots of food and plump him up for transplant. I do know lack of nutrition is a struggle with those battling cancer.

Off to have blood drawn by Irene. She needed 30 mls for todays array of tests. I joked that he would need a transfusion when she was all done. She even set one test aside to do Thursday.

We then went to a room and waited for Dr. Quinonas. The "sleepy room" (propofal) nurse came in to get Kyle's back all numbed up for the procedures and start IV fluids for him. Dr. Q came in shortly there after. He asked Kyle questions about himself from head to toe and every inch in between. He then did a physical examination of Kyle. He also informed us that Kyle is still in isolation due to the virus. He must have two negative results before coming off isolation, thus came the caps, gowns and masks.

After the physical examination, he told us that his lungs from the CT scans last week still did not look good. He said they were pretty cloudy and did in fact have some nodules in there. If the nodules still exisit as his follow up CT next week, then they may want to biopsy them. There is concern about heading into transplant with this virus lingering. There also may end up being a slight delay. He also said that Kyle's sinus' appeared impacted on those CT scans so they were going to do a nasal wash while he was under for the spinal and bone marrow aspiration.

Dr. Q was very pleased with Kyle's physical health and hopes that he keeps his muscle tone in transplant. I smiled at that one. Although skinny, he has always had good muscle tone.

While Kyle went under, I was given our calendar for the next week. I don't have it in front of me but can remember some of it. Tomorrow, 9 am dentist here in town for an exam. 1 pm we meet at Children's with the Life Specialist and 1:30 with the Social Worker. 2 pm is we meet with the pulmonary department.

Once Kyle was waking...I had to meet with the fertility specialist and then meet with someone from BMT with consent forms.

Fertility was crazy. I kept thinking "like we don't have enough to think about here, now you are giving me more things to think about!?" She gave me a packet to read over, we do have the option to attempt to retrieve and save sperm for his future (at a cost no less). So I have to decide this in the next few days while feeling like Kyle himself is still too young to fully comprehend this decision.

Meeting with consent wasn't too bad. I signed off on some items and then was given packets for 3 research that Kyle can help with. I took those home to read over. I am more than happy to help with research, ALL research, and hopefully will help with future cases. They seemed pretty simple yet I still wanted to read them over.

We didn't escape until I was given a little poop collector as well. Gotta collect a urine and stool sample. They weren't kidding when they said they check EVERYTHING.

Kyle's counts were good, kidney and liver functions were good, immuglobins also were good. None of which are in front of me right now either.

We finished off our day with Kyle's list of to do's and had a big lunch at BJ's Restaurant. It was so delicious and filling.

Kyle is doing well with mild back pain issues tonight. We just watched The Biggest Loser and are ready for bed, we love that show. I went to Ty's indoor soccer game, they won and he had a goal...so very fun to watch when they are doing well.

We are exhausted and heading to bed...we have another busy day tomorrow, and the day after that, and the day after that. They have him scheduled to go inpatient on the 20th (a Friday) with TBI (total body irridation) on the 17th, 18th, and 19th. Transplant should be the 25th, again depending on his lungs!

Please pray this virus clears up quickly and we can stay on schedule for transplant. My head is spinning with so much to read, and sign, and digest. It's so surreal listening to all of these people tell me things about what is going to happen, what could happen, things to think about, etc. etc. all with regards to my child. The boy that I gave birth too...and here we are. It's very scary! And the three huge pimples that showed up on my face are proof of that...OK don't start sending me teenage zit creams just yet!!!

Going to sleep...more tomorrow! Thanks for checking in...

Love you all...

Denise and Kyle

Monday, February 2, 2009 8:58 PM CST

Wow...we have been busy with a capital "B"! We are knocking down Kyle's list of to do's prior to transplant. Jen keeps telling him that his list was way too short and he needs to add to it.

1. Get a new comforter set for his awesome bed: DONE! My mom took him shopping for a new comforter set that he got to pick out. It is so neat! He got a comforter and quilt set (new photo added to slideshow).

2. Pet a Ferret: DONE! Saturday afternoon we went to the mall for lunch and then to the pet store to pet and hold a ferret. He loved it and this ferret had some personality to it. He was crawling in and out of the shopping bag having a great time. I think he was a bit nervous to hold him but he did and he still wants one! (new photo added to slideshow)

3. Go see the movie Mall Cop: DONE! Also went Saturday night with Ted and his two boys to see this movie. Although it wasn't as great as we had hoped, it was still kinda cute.

4. Eat at Cinzettis: DONE! We went with my parents and Jen tonight. Kyle ate 5 slices of pizza, pasta, and four dessert crepes.

5. Still need to eat at BJ's...and thanks to a donation, we have gift cards to do that soon!

Tomorrow morning we head to Children's around 9 am. He has his transplant work up (whatever that means), results from the scans last week (I hope), sleepy room at 11 am for a spinal tap and bone marrow aspiration and possibly a quick push of ARA-c.

I will certainly keep you all posted when we return home. Please pray for all good news and that we can move forward as planned.

As for those guestbook entries, Kyle does not have a sufficient bone marrow match at this point in time however they are currently planning on using cord blood. I will have more answers tomorrow I am sure. I can tell you that I have been nauseous for the last week and will be completely surprised if I do not throw up anytime soon. My nerves are all wound up in a tight little ball, sitting at the top of my tummy....I can feel it!

Going to try to post some new photos to share...thanks for all of the prayers, well wishes, cards, thoughts, guestbook entries, financial donations and love!!!

One full bellied Denise and an even more full Kyle

Friday, January 30, 2009 1:27 PM CST

Thank goodness it's Friday right?!? It's a beautiful afternoon here in Colorado and we are just lovin' it!

I took Kyle to the Children's Hospital North Campus (one right here in Broomfield) yesterday for the beginning of his work up stuff. There are pros and cons to having a satellite of Children's so close so I'm not sure how I feel about it all yet.

First up, sinus scan. Which took all of five minutes, quick and easy.

Then he had to drink a HUGE container of *yuck* mixed with blue gatorade (note to self and others, Kyle is over blue gatorade). The had to drink this over an hour prior to his next scans.

While he drank and we waited, they were actually able to draw from his broviac for a CBC (aka counts). That was nice, it eliminated a trip to Denver Children's today just for counts.

Then after drinking MOST of the *yuck*...uuhhh ummm, Nan broke a rule, he was ready for scans. They then did a chest scan and an abdominal scan. No results are in but I am guessing we should hear something on our Tuesday visit with Dr. Quinonis.

While in the lobby, a woman passed by that looked exactly like Jen Campo. To many of you long term followers let me remind you why that name sounds familiar. When Kyle relapsed back in 2004, I had the HUGE pleasure of meeting Jen and her daughter Gia. Gia was in to have a transplant for neuroblastoma, she had a large, inoperable tumor behind her eye. Jen was my angel in disguise as she helped me through some difficult times back then. Fast forward, as this woman is walking by...I scream "Jen". Turns and says, "Nope, Shay her twin sister!" I too met Shay back then but I know I wasn't registering to her.

Anyway, we got to talking and I told her it had been a few years since I had seen them. I was wondering how Gia was doing. Not the news I had hoped for but wanted to share with those that made donations to their family and love her as well...Jen signed off on hopsice papers for Gia last week at Children's. There are no other options left for sweet Gia (she must be 6 by now). Shay proceeded to tell me that the cancer stopped growing for years and suddenly is taking off again. Gia is battling seizures and is not doing well. She did give me Jen's number and said she'd let her know that I would be calling. Oh how my heart aches for that family.

So after being in a bit of a depressed funk yesterday, I went to the gym this morning (sore and bruised knee) and feel better. I did get Kyle's counts just a short bit ago. Part of the con I guess is that when they draw blood at this North Campus, they have to send it to Denver for result so there is a delay in knowing. Anyhoo...here they are:

WBC- 2.1
HGB - 10
PLT - 40
ANC - 1100 (Right on...!)

With those counts, Kyle just head out to enjoy lunch and an afternoon with my mom. He is so excited because has his "list" of things he wants to do before transplant:

1. Eat at BJ's
2. Eat at Cinzetti's
3. Pick out his own new comforter for his super cool bed
4. See Mall Cop at the movie theater
5. Hold a ferret

Number 5...let me explain, this child wants a ferret desperately. Yes, I hear they smell terribly. Although he cannot get one anytime soon due to transplant, I did say once his kicks cancers @ss and recovers...he can get one BUT he needs to hold on first. I think (or I'm hoping) that they freak him out and he changes his mind. Gosh, this suddenly reminds me of how we got that silly Golden Retriever we have!!!

I think we can tackle his list of 5 things, although we have to schedule around this "work up" schedule they are giving me. Here's the lastest on that:

Tuesday - BMT work up and sleepy room

Wednesday - Dentist to ensure he has no cavaties, and Children's for a pulmonary appointment

Thursday - Children's for an Echo

Monday - GFR Scan/kidney function

To top it off, he is battling with losing his eyelashes. One thing that we forgot to expect...so those nasty things keep falling in his eyeballs and irriating him and his eyes. I constantly remind him that he is cute with or without hair, eyebrows and eyelashes. He doesn't believe me but I will keep saying it until he does. We both know that it is only temporary and only one more step toward kicking cancer once and for all!!!!

Now after typing that long update...I am going to shower and get some things done around the house before kids return home!

Thanks for checking in everyone. Thanks to the Wada Family for the book in the mail today, can't wait to play with that one. Thanks Kerri Grasso for the email and rounding up troops in NY to attend the Pay It FOrward Bone Marrow Drive that Jax is holding. Don't forget everyone else to join the registry TODAY!!!!

Have a super great weekend, keep those prayers, thoughts and all that positive energy heading our way!

Just might need a Starbucks today, Denise and off to have a fantastic afternoon with Nan, Kyle

Thursday, January 29, 2009 9:31 AM CST

Good morning...I think?!? I am about to release a 4 year old Golden Retriever into the wild and let him fend for himself. I swear this is night two where that dog has wanted out every 2 hours, all night long. I was so angry last night, and at 4 am...I was letting him back in, tripped over a cord and crashed my left knee into a very sharp corner. I fell to my knees after loudly screaming a word that starts with an "F" and cannot be typed here. I sat on the floor and held my already bruising leg as Striker ran up to my bed and jumped into my spot! So, "good morning", not so sure as it didn't start out so great. Now I'm sleep deprived and drinking as much coffee as I can. I'm so glad my kiddo's slept through all of that...

On a good note, thanks Jen and Susie for the Pom martinis last night. You girls know the way to my heart!

Today, Kyle has a sinus scan, chest scan, and abdominal scan at Children's. He has to be there at 1 to drink some nasty stuff, sit for an hour and the scans begin at 2.

Tomorrow, he has another check up for counts. And next week is filling up very quickly with more tests, exams, etc. I feel as though my phone is constantly ringing with Children's Hospital on the other end. I keep my calendar handy at all times.

I was telling the girls that I am such a one day at a time person that I really didn't keep transplant on my mind as much. I just wanted to get through the chemotherapy, the side effects, the lung virus, etc. Well now, in a blink of an eye, here we are...ready to head to transplant. And I am sick. I'm lost. I'm scared. Kyle is ready!

Now begins the transplant journey for us. Now I have to dig in, plant my feet on the ground firmly, and prepare. I feel like there is so much preparation to do, especially as a single mother. I have a great support in my mom and the Jones crew, yet the burden I feel like I have to care is huge. I know that I can do this, and I will do this...not just quite sure how at this point in time. Probably as I always have right?! Oh how my heart just races at this entire thing. I know it won't be easy, I hate fear, I hate cancer...it feels so degrading, fear can consume a person and dictate so much of a persons life and how they live. We choose to stay strong, stay positive, stay focused! That's one of our many goals!

Would like to give a quick shout out to St. Charles again, as they sent Kyle a Target gift card (I think he's collecting them to get something big, not sure what though).
Thanks to Chris Tiley in Canada for the great books from Amazon.
Thanks to Matt's crew, Tony, Jodie, Karlee and Kendra for the package you sent along.
Stephanie Lindahl in MN for the Netflix subscription.
My brother Mike and family for the balloon bouquet while we were inpatient.
The Schnurrs in IN for the package while we were inpatient.
Jennifer Miller in CA for the much needed Starbucks cards and Target gift card (hint, might be time to buy stock).
Megan Barr in OH for the Walmart gift card.
Sharon Rusk in IN for the box of family gifts.
Lucy Perkins at Tufts University for thinking of us.
Jerry and Marilyn Thomas in IN for the box and frame.
Boni Edwards in NE for the box and all of the cards you continue to send Riley so that she too knows she is loved.
Thanks to Margie, Marcie and the High Sierra Team for coming to visit us while inpatient and delivering bags of games, candy, and goodies to us. Glad we didn't miss you!
Thanks to the anonymous financial donations to A Cure for Kyle. Those donations have helped me stay afloat and have allowed me to have on less thing to worry about.
and...
I cannot find your information (I do my best to save it all and I'm sure I will find it in one of our bags) but to the girl in GA who sent a box of items to us while we were inpatient. We loved the hats and socks that you made with love for us. Riley and I put ours on right away. You did an amazing job...email me so we can give you proper kudos!!!
If I have forgotten ANYBODY...please send me a note so I too can give you proper kudos for loving the kids and I during this time of need! I hate to forget to thank ANYONE for their kindness, generosity and love!

Off to start my day...please pray we get awesome results from these scans today!

A bruised Denise and a very cute Kyle

Wednesday, January 28, 2009 9:14 AM CST

Sorry for the delay, counts are in:

WBC - 1.5 (up from .8)
HGB - 9.8
PLT - 28 (low but holding on to them anyway)
ANC - 590

No transfusions for Kyle yesterday but we are heading back in Friday to make sure he is continuing to increase in numbers.

His lungs are still crackling quite a bit. His right lung (where the primary virus was) is still pretty bad but there is movement in it so they felt that was good. He needs to continue doing his lung exercises and stay hydrated...doctors orders!

I also received the beginning of his bone marrow transplant "work up". On Tuesday, Febraury 2nd, at 9 am we will meet with his transplant doctor (Dr. Quinones). They will do the work up, exam, and labs. He will then have propofol (they put Kyle under) where they will do a lumbar puncture and bone marrow aspiration. I also show on his calendar that he is supposed to get ARA-c again. Nurse Sally asked BMT (Bone Marrow Transplant) about it and they told her that was the protocol for transplant.

I am a bit sad as we will now move from the hands of Dr. Albano and Nurse Sally, over to the BMT department. We've had them for 9 years now so this is new to us. I also made note of the date of transition...9 years to the date of his initial diagnosis in 2000. 9 crazy, long, years!!! I would have never imagined all that we have endured in those 9 years.

Again, a few bone marrow drives going on in honor of Kyle. If you all are interested and I haven't forced you to join the registry yet (wink wink), let me know and I can get you some contact information. I know DKMS is the contact for two of such drives, I believe Bonfils here in CO is holding one as well. Guess I need to hustle on contact information for you guys.

Thanks for stopping in, please keep those prayers rolling as we are now on the road to transplant, expected date is February 25th.

Denise and Kyle

Tuesday, January 27, 2009 9:20 AM CST

I am glad I listened to my 20 plus messages on my home phone yesterday morning, funny only 2 of them were worth listening to. Kyle wasn't scheduled for counts yesterday, they had him down for Wednesday. I'm glad Nurse Sally called because we were both on the same page, "that's too far out"! We are now scheduled to head in today at 1:00. He will have his counts checked and have a physical exam. I'm curious to hear how is lungs are sounding and of course to see what his counts are doing. I think they are on the low side as his desire to eat and his lack of energy have me guessing he might need a refuel.

The bone marrow coordinator called me yesterday as well. They will begin his transplant work up next week. She told me to expect 5 LONG days of testing. They will test every inch of his little body, from head to toe, to ensure he is physically ready for his transplant. The mere conversation had me ready to throw up. I cannot believe we are on this road...! Any fellow cancer moms that want to give me a heads up for this 5 greuling days would be greatly appreciated.

Then...I sat all afternoon and went through medical bills that have piled up. It's not like we don't have enough stress on our minds here, then they send me bills that I have to sort through. I'm still getting billed for the HLA typing to see if I was a match for Kyle. Then some bills insurance didn't cover for random reasons. I am not sure I made much headway on all that but they are all sorted, stapled and sitting with individual post it notes on them! So hey, they look good...!

I have many thank you's to toss out here but I don't have those in front of me either right now. We appreciate all of the gift cards, packages and financial donations that have been sent to A Cure for Kyle, and I mean that with every ounce of gratitude. I've said it before, I KNOW I could not make it through this fight without you all helping me every step of the way..!

I will have to update a bit later too, I know there are numerous bone marrow drives going on for Kyle right now. There is one in NY (thanks to Cyndi, Jax and DKMS again), there is one in Castle Rock, CO coming up (thanks Michelle adn Maddi), and one that Sheila in CO is also working on with DKMS. If you need more information, please let me know. Joining the registry in NOT painful, just 4 cheek swabs. If you are ever blessed with the opportunity to save a life, it is then very similar to giving blood! I can't stress enough how important it is to register or donate your babies cord blood...

I'm sure Denver Chidren's would also appreciate platelet and blood donations. I think Kyle had 4 platelet transfusions and 3 red blood transfusions in those two weeks we were just in, and probably will need more today! Children's ONLY uses their facility for transfusions and donations so you have to donate there for it to be used there. I'm not going to say that's easy as I have had a few pals wake up to nurses, IV's, and snacks in the past (no names mentioned...but I do have photos for blackmail)! You can also donate for Kyle if you so choose. His blood type is B positive.

Have much to do this morning in arctic Colorado...negative 2, what is that all about anyway!?!?! 70's when we are in ~~jail~~ the hospital and now that we are home, -2?? Thanks to the little boys next door for shoveling my driveway and sidewalk yesterday...I owe ya!

Keep the prayers rolling in and the marrow drives going...

Denise and Kyle

Monday, January 26, 2009 9:03 AM CST

We had a calm and relaxing weekend. We are off to Children's this morning to get Kyle's counts checked. He looks a bit *off* I suppose and his appetite is a bit low so we will see. I asked him last night if he thought he might need a refuel of some sort today, he said, "yes"! I'm trying to let him gauge his body and speak up, certainly be more involved with everything this go round. Anyhoo...I will keep you all posted after his appointment this morning. Hopefully, his lungs have cleared up a bit as well.

More later...pray, pray and pray some more!

A FREEZING Denise and a still snoozing Kyle

Saturday, January 24, 2009 6:05 PM CST

Hello my favorite lurkers...

Today has been a good day! Kyle is doing so good, I cannot tell you all how totally proud of him I am. He is so strong and driven to beat this once and for all! I wish I was more like him...!

We really just hung around today. Well Kyle did, I won't let him out of the house right now. Not until I get his counts again on Monday. He seems perfectly fine with that though. He is content sitting on his big new bed and playing his games. Ty has been up there quite a bit with him as well. Riley went on a play date with Taylor.

I ran a few errands. I had to find a Ben Franklin type shirt for Riley as she has to do a presentation on him this week. To top it off, she has to dress like him too! LOL! I'll be sure to take photos. Also ran to Walmart to order a box of contacts for Ty (thanks to the two folks who sent me Walmart gift cards...his contacts are not cheap so your gifts helped me out!).

I also took Striker for a nice long walk, he sure needs it. That dog has so much energy still!

Not sure what we are doing tonight but I do know it involves Kyle staying home. I was going to attempt church tonight but as the clock moves closer to the Saturday night service, I get a bit nauseous. Still haven't been since this last relapse. I still pray, I still have faith, and I still believe...just scared!

I suppose I should figure out what the kiddos want for dinner and get moving on that! I hope you all are having a great weekend, hug your loved ones and always tell them how much you truly love them each and every day!!

Keep those prayers coming our way!

A kind of mentally drained Denise and a happy to have a big bed Kyle

Friday, January 23, 2009 8:57 AM CST

Home sweet home and it feels good!

I was laying in bed this morning thinking how bizarre it is that we spent nearly two weeks in Children's and it seriously feels like time totally stops while you are in there. And then, as I lay in bed...I feel like two weeks were lost, gone, and we can't get them back. It doesn't depress me, just a weird feeling that two weeks were gone in a blink of an eye. Although let me clarify that it doesn't seem like a blink of an eye when you are sitting in there.

When we got home we had the awesome news that a *mystery donor* gave my mom some money to do something special for Kyle. That something special turned into buying Kyle "a big bed". Kyle has ALWAYS wanted a bigger bed. Kyle had a broken twin bed that used to be bunk beds and they used to be Tylers. This bed has taken a beating yet we hauled it over to our new place anyway. Well with this awesome donor my mom bought Kyle a Queen sized bed, mattress pad and sheet. Kyle went to bed at 8:30 last night and is still sleeping, 8 am! He is in pure heaven with his new bed! Thank you mom, our wonderful donor who wishes to remain a secret, and thanks Gil and Jen for getting it over here and set up.

We are certainly going to lay low this weekend, I am not comfortable taking him anywhere until I get his counts again on Monday. I do not want a repeat of any sort, especially so close to transplant.

Keep those thoughts and prayers coming...we can use them all!

A happy to be home pair of cancer kicking kids,

Denise and Kyle

Wednesday, January 21, 2009 10:57 PM CST

I'm sure by the time many of you read this, it will be morning yet we were so excited to share Kyle's counts with you all so here goes:

WBC - .8
HGB - 10.2
PLT - 21 (might need a *refill*)
ANC - 198 (woo hoo...)
APC - 230

I think we won our "get out of jail free" card! We won't know for certain until rounds, around 10 am.

Kyle and I had another good day. The weather here in Denver was a record high at 76. Kyle and I ate lunch out on the patio and the bees were actually attempting to join us. First of all, thought they should be gone this time of year and secondly, makes me wonder how many bugs we will have this summer...

After lunch, we took a stroll around the campus. It was so nice to soak in the warmth of the sun and breathe the fresh air. We had a good time and great conversation.

Thanks Jen for the clothes and Subway run, we were running out of clean things to wear! Sorry you didn't get to stick around and enjoy the movie, we ended up watching "Kicking and Screaming".

Kyle is already snoozing so I am going to follow his lead...

keep those prayers rollin'!!

US

Wednesday, January 21, 2009 10:34 AM CST

I hope todays update finds you all doing well. Since being held hostage here at Children's, I am an avid Facebook junkie...and it appears by everyones status around the country that almost everyone is having some type of crazy weather going on. I know it's supposed to be in the 70's here in Denver.

Yesterday we were given the "good behavior" pass and went on a little walk outside. The fresh air was very nice! I attempted to get him to have ice cream and sit on the patio but he didn't want to do that. I could tell our little stroll was plenty for him.

We came back to the room and watched StepBrothers AGAIN with Jen. We've run out of movies and need to recycle ours. We've also run out of clean clothes and need to refresh those as well. I haven't found the washer and dryer around here yet but we'd also like a little variety after nearly two weeks.

Thank you again for those that send us restaurant gift certificates. They sure have kept us afloat this stay. We ordered a huge, gianormous, cheese pizza from Anthony's last night. It was VERY tasty...! We also used our Noodles gift cards and even scored some mood rings...portion of the proceeds going to the Make A Wish Foundation, although the worker gave us ours free. Ed brought BJ's (our favorite) in yesterday for lunch...so thank you! Kyle devoured his nachos. Yum...! As you can all tell, we like to eat! The gift cards have been a super help in keeping our tummy's full!

Our nurse came in to remind us we do not to "get out of jail free" and that we will be sitting around here again today, waiting for counts to rise. They did a little bit with last nights counts:

WBC - .6 (up from .4)
HGB - 10.9
PLT - 40 (were 55)
ANC - 52 (up from 16)
APC - 66.6

Well we just ordered our usual breakfast, cheerios and bananas. Then it's time to shower, take a walk, hunt down lunch, watch a movie, play some games, have dinner...we are getting a routine down that's for sure!

Please pray for those counts to keep rising so we can get home, I miss my kiddo's, my puppies, and Nut. I almost miss cleaning the floors and doing laundry too!

A Facebook junkie Denise and a video game junkie Kyle

Tuesday, January 20, 2009 9:44 AM CST

Morning our loyal Kyle fans...

Nurse Grant is in as I type, said rumor has it Kyle's lungs are sounding better and better. We will be sitting here for at least another day but that's OK...better safe than sorry.

Kyle is now unhooked so he can wander freely around the room to get some movement going. He tires easily yet he has been laying down for well over a week now.

Counts are in from last night:

WBC - .4 (up from .2, that's good)
HGB - 11.5
PLT - 55 (down from 71)
ANC - 16 (double digits...woo hoo)
APC - 54.8

Yesterday we watched Vantage Point, it was OK. Trying to brainstorm what we want to watch today. I do know we will watch history at 10 am, the Inauguration of Obama.

My mom is still not feeling well so she is at bay. Thanks Jen and Susie for bringing in her chicken and rice last night. Thanks Jen for doing *Denise duty*, you've been a tremendous help and I can't say that enough. Everyone needs a Jen! Thanks Ted and kiddo's for coming to visit us last night, the helicopter you guys brought in is very cute and I KNOW Kyle loved having the boys to play video games with.

We are off to turn the television on and find some breakfast. Thanks for checking in and sending so many thoughts, prayers, well wishes, gifts and cards! We appreciate it all...

Starbucks craving Denise and Home craving Kyle

Monday, January 19, 2009 9:43 AM CST

Here we are...still in 703! Hmmm...I asked Kyle this morning as I trudged back from the parent lounge with mediocre coffee if we should just set up home here. He very quickly shook his head, "no!"

Yesterday, Kyle was off oxygen almost all day and night. I awoke at 4 am to the oxygen alarm beeping non-stop. Kyle would adjust and readjust hoping to change it but to no avail, Nurse Mike came in and planted a mask on his cute little face. We both were so tired (took til 5:30 am) that we fell back to sleep pretty quickly. Poor kid is sick of the oxygen that's for sure.

Nurse Grant said this morning that the top his lungs sound good, the bottom sound like a bag of marbles. I interpreted that as, "you guys aren't going home today"!

I knew that last night when Mike came in with the bad news and the good news line.

Bad News - ANC went down from my 9.9 I held onto yesterday. Good News - since Kyle is on a "fever study" they also check his APC and that went up to 57. Mike sees that as a good thing as the ANC usually follows the APC.

Here we go:

WBC - .2
HGB - 11.5
PLT - 71 (had a transfusion after two bloody noses yesterday)
ANC - 6.2
APC - 57

Thanks KimD on the research of the virus and thanks ML for the scoop on the "large platelets". I was told by the docs yesterday that that was a good thing.

I guess we continue to sit and wait. Thanks Jen for bringing Ty in yesterday and for taking Riley home with ya. We had a blast playing Scene It on the XBOX, Jem is a rockstar just like I knew she would be! Thanks to Donn for coming in to hang out with us as well...glad you didn't get injured with any flying marshmellows. Thanks Arthur for coming in Saturday and teaching Kyle the card trick. I won't let him tell me the secret because he is way too cute doing it!!!

I want to thank you all for the movies you've been sending as well. We watched Hancock last night and really liked it. DrillBit Taylor was pretty cute as well.

I am about to take a gun to that stinking oxygen alarm...!!! I cannot take that *beep beep* anymore!! GRRR!

Guess that's it from us...please keep those prayers rolling cause we want to get out of here and enjoy some time prior to transplant stuff (I think work up starts February 2 - our 9 year cancer diagnosis anniversary - crazy)!

Thanks for stopping in -

I need a Starbucks Denise and deep breathing Kyle

Sunday, January 18, 2009 10:28 AM CST

Morning...Day 8 of being here. Let's see, Kyle continues to be on oxygen. His lungs poop out pretty quickly without it. He is doing his breathing exercises though as he is determined to get better and get out of here.

We have a double digit ANC this morning and an uprise on the white count...can you say *P*A*R*T*Y*?!?

WBC - .3 (up from .1 yesterday)
HGB - 12.1 (NORMAL)
PLT - 20 (OK this number stinks and he needs a refill soon)
ANC - 10

The Platelet estimate says the following, "large/giant platelets present". What the heck is that??? Ain't never seen that befo'!

Words of "home" chimed out BUT we will not go home until he can maintain oxygen AND they upped it this morning because he was dropping at the lowest level. He will continue breathing exercises anyway. They brought him a marshmellow shooter to help out.

Riley was homeless last night so she stayed here with us. It was so nice having her, I miss having a "snuggle buddy". She brought me a squirrel webkinz (named him Nutz) because I was so jealous that Kyle got one.

The three of us are hanging out now. My mom said she isn't feeling well today so she is not allowed to visit us. Other than that, I think a few visitors are expected today...we love company! We love company with food even more!!! Just kidding, we are doing OK. I should note Kyle has lost a few pounds since arriving. Not good when you already weigh NOTHING!

I am going to go finish watching him shoot German Shepherds and bad guys on Call of Duty. What happened to Pong and Pac Man anyway????

Enjoy your Sunday and pray his lungs heal quickly!

I need a new razor Denise, Coughing and killin' Kyle, and glued to Club Penguins Riley

Friday, January 16, 2009 6:15 PM CST

Kyle tested positive for a virus late this afternoon. For those of you that like to research, let me know what you come up with:

Human Metapneumovirus RNA (in the RSV family)

I looked quickly and saw that it requires fluids, rest and oxygen...all of which he is doing! I haven't spoken to the doctors yet but do believe our stay has been extended!

He has been off oxygen all afternoon with only one warning to breathe or he's back on. I am guessing he will go back on tonight.

Thanks to the Espinosa family for bringing us an amazing lunch today, complete with chocolate cupcakes. My brother and his family (Mike) for the balloon bouquet and candy bar. Kyle has had a blast knocking it all over the room!

His spirits are good and is cracking all types of jokes! What a trooper...!

Doc just came in to listen to him...more later!

Keep those prayers rolling!

Denise and coughing Kyle

Thursday, January 15, 2009 10:10 PM CST

Evening from a very sleepy couple of cancer fighters...

Kyle went down to radiology at 3:30 pm. He is wearing his CCKMA shirt (cancer can kiss my ass) and received many compliments on his way down. One doctor said they should slap the Childrens Hospital logo on the back of them.

The doctor told Kyle and I every step of how the procedure would work for a bronch scope and biopsy. Poor kiddo thought they were going to slit his throat open to look. I made sure he realized there would be none of that. They showed him the camera they would put down his throat while he was sedated. They would then inject saline and suck it back out with some of the cells.

They showed me his xrays and I saw the cloud in his right lung and lower left lung. I was surprised that his lungs have worsened since his cough seemed better.

The doctor told me that it would take five minutes and it would be over. HA! I'm not sure doctors realize that one minute to them is one hour to us! So 25 hours later in mom time, the doctor came out to see me. He had two large vials of fluid, which surprised me. He said normally they only take 5 ccs but Kyle had plenty to take. They then asked if I would mind using the remaining fluids for studies. I gladly obliged and have to sign some papers tomorrow for that permission. I kinda wish they could have sucked it ALL out of his lungs personally!

I greeted Kyle in recovery and he did amazing. I helped the nurse wheel him back up to the room where he fully recovered. And yes Sean, he really needs to keep doing those exercises...he hates them cause he coughs but I will stress again the importance. He is now supposed to do them every hour.

He is on 4 medications currently (3 antibiotics and 1 anti-fungal). He had platelets this morning and that was his only transfusion today. He looks really good to me minus the breathing tube in his nose. Jen, Susie, my mom, Riley and Ed came in tonight...Kyle was in his typical comedian mood and we had a super time. He is too cute as he recites lines from Stepbrothers.

His last fever was in the middle of the night last night when he woke up in a sweat and his blood pressure has been stable all day. We were supposed to get a preliminary biopsy report tonight but have not yet. Final report could be a couple of days. Ed text me this evening and said he talked to BMT a bit, he said if "nodules" come into play that Kyle cannot have a transplant. My thoughts on that right now are "one day at a time" and let's just get through this right now! I can't think that far right now nor do I want to.

Thank you all so much for the thoughts, prayers and well wishes. Thank you to Steph in MN for the super cute card of your kittie (that is taped up on our wall here) and the Netflix membership. I am certain that will come in handy. Thanks Jen for bringing Kyle a couple of gifts for his phone and Susie for the Webkinz Squirrel...Hector! Thank you mom for all that you do to help us on this difficult road! You guys give me so much strength when I am about to crumble. Thanks for picking me up and encouraging me on, I need you!

With that, I think we have another medication coming in soon and one more breathing exercise before bed. Hopefully it will be a quiet and very restful evening. I feel like he is on the upswing...I should have counts in the morning. Pray for good news on that biopsy!

Nighty night...

Denise and Coughing up a lung (literally) Kyle

Thursday, January 15, 2009 1:01 PM CST

Yesterday was NOT a good day. Around one in the afternoon Kyle took a tumble for the worse. Before we knew it there were nurses and doctors standing over his bed and talking about ICU. Fluids began at enourmous rates and everyone was in panic. Radiology came up and took a quick xray of his lungs, his oxygen level was way low, his blood pressure was tanking.

ICU doctors came up to evaluate him, luckily the fast fluids helped him out a bit so ICU said he was good to stay on the unit for now. Two bags of red blood were given to him yet he remains on oxygen and vitals 24-7. This does not make a happy Kyle. Quick xrays determined he has pneumonia in his right lung.

Things calmed down a bit before bed. He was able to keep a bit of food in his belly. We snuggled up at 9 for bed and then his blood pressure was too high. A slight panic began however in the middle of the night his fever broke and blood pressure stabalized.

He received platelets this morning, I have no counts but sure they are all over the board right now with everything going on.

He is on 3 antibiotics around the clock and we went down at 11 for more chest xrays. No results yet but Dr. Hunger says he is crackling, which he was not doing yesterday. He is no food by mouth right now in case they was to sedate him and scope his lungs. He is still on oxygen...miserably on oxygen.

I think he looks pretty good...he's so terribly frustrated as am I. We slept from 12 to 5 am, which felt good actually. I was so emotionally drained yesterday and feel so again today. I'm not sure how this will impact transplant but right now I am focused on today and getting him better. We want to go home so badly...yet I know until we resolve his lungs we are staying put here!

Please pray for Kyle...and add in some strength for mom. I had a mental setback yesterday and I know it terrified Kyle. I rarely cry so when I do it scares the heck out of him, maybe I should just cry all the time so he would think, "there she goes again!" Kidding - sort of!

I will hopefully know more about the xrays soon...it's been an hour for goodness sakes!

Thanks for checking in...

Denise and a miserable little Kyle (boy does he hate the breathing exercises they have him doing)

Wednesday, January 14, 2009 10:33 AM CST

Frustration is setting in a bit, we want to go home! It's terrible when there is no end in sight.

Kyle battled a migraine yesterday so I sat in the dark all night so he could attempt to sleep. Thanks Jen and Susie for running in at dinnertime with a Starbucks and conversation. Not to mention the book that I look forward to reading, and the trip to the store for a book light so I can read, and the jumbo pack of Oreo cookies, and...and...and....I truly appreciate you guys!

This mornings counts are down again. Kyle is having headaches and tummy aches. He continues to not eat, and when he tries it just comes right back up! At least he is up today...well sort of, he is lying in bed with the XBOX controller in hand.

Today's counts:

WBC - .2
HGB - 8.9
PLT - 21 (fever ate those right up)
ANC - 17

Kyle is on Tylenol with codeine every 4 hours, anti-nausea medicines, and an antibiotic still. He was removed from the Vanco (another antibiotic) yesterday.

That's it from Room 703 this morning...I'm not such a happy girl, frustrated and tired!

Denise

Tuesday, January 13, 2009 10:32 AM CST

We had a visitor last night...not a welcome one, it's name is Freakin' Fever! Grrr! We were up quite a bit last night getting Tylenol and cold washcloths on his forehead. He is not a happy boy right now and he is super tired.

Here are his counts from this morning:

WBC - .3 (up from .2, c'mon Neulasta)
HGB - 9.3
PLT - 40 (fevers love to munch these)

Going to go tend to his headaches...which usually includes a foot massage from mom!

Please pray for count recovery and HOME!

Denise

Monday, January 12, 2009 11:28 AM CST

Ahhhh....we both slept very well last night! I was rather surprised to awake to snow though. Of course from the big glass window in our room, I enjoyed the view yet was very glad I wasn't driving in it!

Kyle ended up getting a bag of red blood yesterday, which helped his headaches quite a bit. Actually, now that I type, I don't think he has complained of a headache since.

I just received his latest blood counts...I was pleased to see his WBC go from .2 to .3. I know it seems like it is insignificant to many yet ANY climb up is a great thing. This means that neulasta shot he received last week has that much more to attach to so he can start creating MORE white cells.

WBC - .3
HGB - 8.7 (still low)
PLT - 53 (better than the 18 last reported)

Word this morning is we are staying put but that's OK too. As long as Kyle is feeling good and stays fever free, we are on the right track.

We watched Extreme Home MakeOver last night and then took a walk around the oncology floor. It's the simple things that please us.

Yoga starts in 20 minutes, I was going to attend yet I think my head might explode at the first *down dog* that I have to do. I am bummed as I thought that would be a good thing to do this morning.

Thanks Jen for making a run in last night for us. Kyle had some hot boneless buffalo wings and a very LARGE piece of ~~PMS~~ chocolatey chocolate cake. And as always, that Starbucks was tasty. I'm glad you made it back from Louisiana safely and enjoyed hearing some Gary (her brother) stories...! I am thankful he arrived back from Iraq safely and is on the very last leg of the military. Can't wait til he gets back so I can have 4 Jones family members giving me a hard time!

Not much else to report, all is quiet, which is a GREAT thing. We just need to grow some HEALTHY cells around here so we can bust out of here and have a few weeks of family time prior to our transplant journey!

Prayers always welcome!

Denise and Kyle

Sunday, January 11, 2009 12:45 AM CST

Too good to be true or the reality is always lurking..??!!

We are back at Denver Childrens, Room 703!

Rewind:

Kyle was having a pretty good day yesterday until dinner time. Tyler requested fench toast and bacon for dinner. I whipped that up for the kiddo's and noticed right away that Kyle shook his head "no" when I put it in front of him (sign #1 - decreased appetite). He said the back of his head hurt (sign #2 - low counts, hemoglobin headache). I felt his head and said "yup, cool as a cucumber. You can have a Tylenol.

7:30 pm rolls around, "where is Kyle"...I head up to his room and he is under his covers (sign #3 - No video games). "Kyle, feel like crap (not my exact wordage)?" He shook his head "yes" and rolled over to face me (sign #4 - pale face, dark circles).

I know he had just taken a Tylenol so his fever could be masked BUT I did my routine check each ear twice with the highest temp reaching 100.

Time to pack...I know where we are going in a few short hours!

By the time we arrived to the ER, he had no fever again yet I knew we had to be here. Sure enough, his counts plummeted. The platelets he received on Thursday were all gone already as he was back down to 18.

We got to our room at 3:30 last night and the platelets were anxiously awaiting our arrival. Kyle was hooked up to antibiotics (vanco) and he was *refueled* as we got a few hours of sleep. No fevers still...thank goodness. We are just staying put until count recovery. He should be getting blood and platelets again tomorrow.

The doctors made their rounds this morning and gave me the typical one line, "you know the drill, we wait for counts and keep him on antibiotics!" Their guestimate is one week inpatient....bleckkk!

Already ran into our fellow Broomfield family (Amandas family - the one who did the bone marrow drive the month before us here in Broomfield). Her body rejected the first cord blood transplant so she is getting ready for her second. She looks great by the way! They will be in transplant at the same time we will be...!

We are pretty tired as we only slept for maybe 4 hours. I can't decide if I should nap or shower or shower and then nap. My mom is on her way in with the things I forgot...like my stinkin' antibiotics and cell charger!

Guess we will hang low here at Children's. Feel free to visit if you are healthy...we love company! As always, keep those thoughts and prayers flying in hopes it is a painless count recovery for him!

Over and out for now...

Denise and Mr. Kyle

Saturday, January 10, 2009 6:54 PM CST

Today has been a much better day around the Lindgren house. Kyle's mood as improved although his color is still pretty pale. He ran down the stairs this morning to grab a hot cinnamon roll and cut his heel on a nail. I too have felt the nail on the stairs but never could actually find it. Needless to say, his heel was cut and the blood flowed. It wasn't a huge cut really but with his platelets being so terribly low...he did bleed for a bit. I applied pressure, scrubbed it with antiseptic, applied more pressure, Neosporin was slathered, and gauze with a bandaide were put on it. Glad I could tell he wasn't worried, he was rushing me to get back to a very important World of Warcraft game!

The kids have had a super weekend so far. I feel better but not nearly where I would like to be. I keep coughing, nose running, and actually had a few miscellaneous, shall I say, things cough out of my lungs! Hmmmm....I sure was sick!

Thanks to the Konger family for hte gift package today, Riley immediately put those cute Hannah Montana pj's on and didn't peel them off until she went to my parents to play with her cousins. Thank you also to Kyle and Laurie Hansen for the gift cards today. My goodness, I know we can use ALL of those...as long as I find some me time. Of course the BJ's gift cards are going to be used up right away...no problem there!

You all are such an amazing bunch, I truly feel blessed to have you all in my life and in my children's lives! Although each day I just put one foot in front of the other...you guys help me take those steps!

Thanks for stopping in, I hope you all are having a great weekend. So far, we are HOME SWEET HOME still!

Denise and the kiddo's

Friday, January 9, 2009 12:46 AM CST

Hmmm...my mom told me, "if I don't have anything nice to say, I shouldn't say anything at all." Oh wait, I have nice things to say, it's my children that are being mean to me. Tyler and Kyle were not so nice to me yesterday. I still feel like hell and was near tears by the end of the evening. Yes, I know Kyle is often "mean" after he get's platelets, that was always our running line since he was little, "you must have gotten a mean persons blood!"

He has chilled out a little bit this morning but he's still tough on me. I know he feels like hell, I know he's been away without me, and I know his counts suck...so I take lots of deep breaths and remind myself of those things.

I'm tired of using the excuse for Ty that he is *just a teenager*. I've always felt people should accept responsibility for their choices, actions, and consequences. I feel Ty should be no different. It's not acceptable, especially when you are not pulling your weight anyway.

Riley was a sweetheart last night because she did see that my feelings were hurt and I was sad. Needless to say, we went to bed at 9 pm.

I feel like hell. This antibiotic is very strong but not touching my head. My ears are both clogged and when I bend down my head shoots pain. I just started taking Advil cold and sinus at the recommendation of none other than, my mailman!!!

By the way, he delivered a nice package today from Catherine Bernard. I am waiting for grumpy pants to come up and open it. Cyndi (Jax mommy), thank you for the Blockbuster gift card as well. I also received a statement from A Cure For Kyle...our first statement. So those that donated money to that fund...gosh thank you! Your financial contributions do not go unnoticed at all. Thank you so much for the anonymous donations to the account. Your financial generosity certainly does not go unnoticed as the medical bills begin to pour in. Not that trying to deal with Christmas wasn't enough huh???

Please pray Kyle stays fever free! Our next appointment is Monday for blood counts, I hope we can hold off the hospital until then!

Thanks for stopping in, your all are such an amazing support to me!

Hugs from a kinda cold Colorado!

Denise

Thursday, January 8, 2009 1:21 PM CST

Thank you so much for the cards, emails, and guestbook entries for well wishes. I finally slept well last night and most importantly I can breath and hear again. (OK sometimes not hearing was OK too)! I am getting better with almost 48 hours of strong antibiotics in me!

Now for Kyle...he stayed at my parents house yesterday and last night. He is doing so very well, I am so proud of his strength and determination.

My mom took him in this morning for his Neulasta shot. His counts continue to plummet:

WBC - .3
HGB - 9.4
Plt - 17 (YIKES!)

Needless to say, they are still at Children's as Kyle is going to get a *refuel* of platelets. They are washing them first so they will be there for most of the afternoon. I am hoping this will help deter any fevers from arising!

I miss him so much!!!! I cannot thank my mom enough for her support, love and caring this week for Kyle. I too am proud of my mom...!!!

The Blades family has a package on my table waiting for Kyle to come home and open it up, yes he is coming home this afternoon. I cannot wait!!!! I am dancing in my shoes...I won't hug and kiss him but you all know I want to!!!

Have to run and make sure this house is as sterile as I can get it!!!

Keep those prayers coming, they are clearly working!

Denise the mommy who is like a puppy so excited she could pee herself!!!

Wednesday, January 7, 2009 9:02 AM CST

First of all, Kyle and my mom are still at Children's. His leg has EMLA (numbing cream) on it for a Peg (chemo) shot. He is supposed to be discharged soon, yet my mom is kind of wondering why. His protocol does state that it is recommended he stay for count recovery "due to risk of sepsis", yet they have said he will be returning home. He does head back in tomorrow for a Neulasta (white count booster) shot. I will have them check his counts once again tomorrow as his platelets continue to drop. I believe she said he was in the 50 range now.

Mom also reported that he did throw up last night and it appeared very *phelgm like* which is most likely from the ARA-c. They gave him an ativan and he went right to sleep. His last chemotherapy was from 2 am to 5 am.

On a happier note, a *mystery* package arrived at Children's last night. Thank you so much to our unknown friend for the basket of goodies and gift cards. That was a truly awesome gift and Kyle was thrilled to tell me about it. I can't wait to take a peek at it! Thank you with every ounce of my being.

Thanks Michelle and Maddi for making a trip to see them last night as well. Mom said that he surely welcomed new visitors. You also made me feel better when you said he is doing awesome and looks great. He is kicking cancer butt that's for sure. He amazes me!

Another thank you to Debbie, Kimberly and Lauren Roos for the very cute card and gift card. It is so greatly appreciated by me. It helps us so much!

As for me, I went to the doctor yesterday who gave me a very strong antibiotic. I guess it's a sinus problem gone crazy on me, moved into my lungs a bit and my ears! The lady at Costco gave me the heads up on how strong this antibiotic is and she was right. It defintely made me sick to my tummy last night. I slept terribly as I woke up twice drenched in sweat. My right ear feels like it's on fire and could drain any minute. I should have 24 hours of medicine in me this afternoon. Mom is unsure if she should bring Kyle home! Grrrr....this is driving me INSANE!!! I miss my baby boy and yet I am so very proud of him!

I suppose that's it for now. I'm going to call his nurse and see what she suggests as far as bringing Kyle home! I have to make the best decision for him!

Will keep you posted, please continue to pray for Kyle as we all know he is about to bottom out with counts in the next few days!

A still sick and missing my Kyle...Denise

Tuesday, January 6, 2009 10:38 AM CST

Kyle has two rounds of ARA-c down with two to go! Mom is still with him as my cold is not getting better and indeed may be getting worse. His counts have plummeted as expected so I am not risking anything by being near him right now.

Yesterday prior to starting chemo his counts were as follows:

WBC - 1
HGB - 10.7
Plt - 82
ANC - 630

I did talk to Kyle's nurse who felt respiratory stuff was a definte NO NO! I cleaned my entire house yesterday, decorated Kyle's room, stared at the clock, took every home remedy thrown my way (including peroxide saturated q-tips up my nose...lol)! Hmmm...I have no medical insurance (before you panic, Kyle does through my ex-husband). My doctor is amazing though and I think I will plan a visit with him today!

Mom said all is going well at Children's. She and Kyle watched a movie last night. I text or called them often. I'm not sure his phone is getting text messages for some reason. I so wish I could be there, or even sneak a visit but I can't.

Kyle seems to be doing OK without me, he said Nan is doing a good job. She told me to call my doctor so that is what I am going to do. I can't even believe this...I always worry about Kyle being around sick people, I forgot about myself!!!

More in a bit...pray for Kyle as he is without his mommy right now!

Denise

Monday, January 5, 2009 10:41 AM CST

Welll....let the sickness continue. I offically caught the "junk" Saturday and was hoping to beat it. Luckily, my mom came home from Missouri a day early because I just dropped Kyle off with her. He has luckily avoided getting the *germs* thus far and it was with HUGE hesitation and reluctance (but with intelligence) that I made the decision this morning to have her take him in for this round of ARA-c inpatient.

First and foremost, I do not want him catching this at all. Although he was exposed all weekend long, I felt it was best if I not stay with him at Children's. Not only was it better for him, it was better for all of those other children in the unit. I would not want another person putting my child at risk, and therefore could not put any other children at risk. This *yuck* appears to be very contagious as it's made it rounds with others we've been in contact with as well.

Part of me has that "I feel like a bad mom" yet I think it took courage and strength for me to make a good mom decision but not subjecting Kyle or other immuno-compromised children to this.

This is a very difficult thing for me as in the 9 years of this, I have NEVER missed a day. I delivered Riley and was out in 24 hours to get Kyle to his next chemotherapy appointment. I also believe, this is the step we might need to help me in transplant. I know he will be in there for the longest period yet. I've battled mentally with being there with him the entire time, and my obligations at home to my other children as well. I think this will help Kyle prepare for the mere fact that during transplant, he will have to allow others to help!

He seemed reluctant this morning but I know his logical mind completely understood my decision. Once I knew he appeared *sort of OK* with it, I felt a tad bit better! I think I am going to be a basket case...

as for now, I'll try every home remedy I can think of to kick this cold in the butt!

Please feel free to visit Kyle (as long as you are healthy), send him love, thoughts and prayers as he takes on this round without his mommy! His strength and determination continue to amaze the heck out of me.

We went to lunch this weekend and I said, "I can't believe transplant is so close." His response was, "good." I said, "good?" and he replies, "yes, the quicker we get started the quicker it will be done and we can get on with our lives once and for all!" Wow...this from my newly diagnosed 3 year old to the smart, cancer kicking 12 year old!

Time to tend to Riley...wow is she a complainer! "My throat hurts, I can't breathe, my nose is stuffed, I feel yuckky"...she's killin' me!

Feel free to shoot Kyle a text or call at 303-570-1786. I'm sure he needs a little extra TLC without his mom. I have total and complete faith in my mom, she's trained for this the last 9 years...!!!

I will keep you all posted,

Denise

Saturday, January 3, 2009 12:01 AM CST

Uh boy....!!!!

Just got back from Urgent Care with Riley. We slept terrible and she started complaining of a sore throat yesterday. Last night, no sleep was to be had around here. Throat got worse, tummy hurt, and the croup like cough that she is famous for approached.

Urgent Care did a strep test and that was negative. They believe that even though she got the flu shot, she has a case of the flu. Given our circumstances, the doc gave me a perscription for Zithromax just in case. I did fill it, "just in case".

On our way home, she *tossed her cookies* on the floor of the 4Runner. Can you believe this cancer mom didn't have a barf bucket in her vehicle??? I did scrounge up a plastic bag but it was too late...yuck!

She is now in my room, door closed, Lysol sprayed, movie on, barf bucket next to her, fluids going in, crackers being eaten, and of course her cell phone in hand to call me at her every last desire!

Kyle is in his room, coughing....lysol in hand.

Jen is out of state, my parents are both out of state, Ty is out of state, unfortunately there is only one of me, and we are supposed to go inpatient at 11:30 am for more ARA-c. UGH..........!!!

Today, it's not one day at a time...maybe more like one hour at a time! I must have amazing faith to not be pulling my hair out. OK, that is Kyle upstairs coughing!!!

Thanks Gil for coming over yesterday to fix my fence that blew down in hurricane wind like conditions so our big red dog doesn't run away!

Jen, we did not get suckered into another Guinea Pig yesterday, Nut is a loner and will remain that way. Besides, it will be easier to foster him out during transplant that way!

KimD...miss you, where are you?? Wanna trade places for sayyyyy a few months??

Off to play Nurse! Kyle's cough is driving me crazy with fear!

More later, cause at this rate - there will be more!

Nurse (without a license or pay) Denise

Friday, January 2, 2009 5:25 PM CST

It doesn't feel like Friday...our days are really messed up.

We made it home Wednesday from Children's and immediately plopped on the couch. We watched a record 3 movies and I attempted a little cat nap during one of them. We were very wiped out. That stay of 2 am chemotherapy and eye drops every two hours really did a number on us. I don't think I've really slept well since either.

Kyle is doing amazing so far, I keep waiting for the other shoe to drop though...I know it's coming!

We have been busy preparing for another stay on Monday. Round 2, same as last week. His protocol suggests we stay until count recovery due to risk of sepsis...hmmm!

Jen just left me too! She has good reason as her brother is on his way home from Iraq and should be in Louisiana on Monday. Her family drove out to welcome him home. I am thrilled for them as he is coming home for good!

My parents and Ty are still in Missouri and I think I am going to attempt to rush them home to help me out. I haven't quiet figured out how I will handle things without Jen!

Sean, Kyle and I got a kick out of your most recent entry in the guestbook. The Broncos stink...yet, we are in total shock Shanahan is gone! Wowee, who woulda thought!!?? I mean we thought it but never believe Bowlen would do it! I forgot there is more football ahead, I think I better pick a team to follow for the rest of the season.

Well more to do, I have a list of phone calls to get out of the way before heading inpatient.

Please say a prayer for a special family of mine, Issac Hall, http://www.caringbridge.org/visit/isaachall, he passed away December 31st and rang in the New Year with the angels above! My heart is so heavy for them. If you get a moment, cut and paste their website, send them a special message in their guestbook.

Thanks for checking in...Kyle is tough as nails right now!!!

From a gorgeous, sunny, warm and a bit windy Colorado!

Denise

Wednesday, December 31, 2008 10:02 AM CST

Happy New Years Eve Day...

Last round of ARA-c is in, eye drops are going (eyes look good), PEG shot is in left thigh, discharge papers are written up...we are just waiting to see the docs during rounds and WE ARE OUT OF HERE!!!!!

Keep praying we can stay home until next Monday....no fevers, no more headaches, no *tossing his cookies*...just time at home!!!

- Denise

Tuesday, December 30, 2008 1:40 PM CST

Evening update:

Kyle slept until 6 pm tonight. His third dose of ARA-c is in with one left at 2 am. His eyes are starting to turn pink so they added dexamethosone (steroid) eye drops to his eyeballs as well as upped his 4 hour drops to 2 hour drops. Poor guy...like those aren't bad enough.

He also just threw up a bucket full of flamin' hot cheetos so we are going to add some anti-nausea meds. His nurse just informed me that vomiting with ARA-c is uncommon...go figure.

Jen just ran to BJ's for round 2 dinner. Kyle ordered soup, good thing...let's pray it stays in.

Pray we get through this last 2 am round of chemo and can get out of here in the morning, I'm getting a little nervous!

Denise

Afternoon from Denver Children's room 715, two rounds of ARA-c down, two more to go. Next round is at 2 this afternoon and last round at 2 am. Let the freaking headaches begin...he now has a dose of atavan in him and I am anxiously awaiting for him to fall sound asleep.

Eye drops every four hours and two am chemo is doing a number on my puffy eyes, bald headed, little boy! He just rolled over in an attempt to get sleep yet in about 20 minutes they will come pre-medicate him and put two drops of eye drops into his little swollen eye balls.

His broviac is being very fussy this stay as well. The red line would not draw any blood at all so they have been using the white line. Well at 2 am, I heard his nurse trying to get him to do some form of gymnastics to get a return from the white line...can't start chemo unless we have some form of blood return. They finally got it to draw as he stood by the bed with his arms waving in the air.

I'm sure he will just fall asleep and they will be back in to wake him up. He may just sleep away the New Years celebrations anyway. As long as he is in his own bed, we don't mind!

Thanks to Tammy Nelson for the wonderful Subway sandwich lunch. She provided a ginormous sandwich, chips, drinks and cupcakes to the entire inpatient floor. By the last few crumbs on the tray...I can tell everyone truly enjoyed and appreciated your kindness.

Thanks to Ed for BJ's restaurant dinner last night and the bottle of red wine. It was deliciouso...

Thanks Jen for making a run into Children's last night with a special package arriving from Ruth Marburger in Fort Wayne, IN. The package was awesome...I did have to hand over the Starbucks gift card to Jen, who promptly brought me a Toffee Nut latte this morning. Riley has been playing with the skateboards all night and morning. Thanks!

Riley spent the night last night here, she is complaining of boredom now so her friend Gianna and her mom are on there way in to steal her...phew. Listening to a "bored" 8 year old girl is almost, well let's say, painful!!

I met another family while grabbing a plate of Subway. She is 11 and dealing with relapse ALL. She relapsed in November but is struggling to get back into remission, her mom said something about relapsing while on chemotherapy but I haven't had the opportunity to get their entire story (remember that bored 8 year old girl I have?). I will catch up with them again soon, I pray they can get her into remission so she too can head to transplant.

I'm going to stop punching letters on the keyboard now so Kyle can get some restful sleep. I believe you all know where to find us...at least until tomorrow morning (heard our release time is around 10 am tomorrow after those painful PEG shots in his thighs)!

Until then...

Denise

Monday, December 29, 2008 4:03 PM CST

Hello from Room 715 at lovely Denver Children's Hospital!

We arrived just after 11 am to check in for ARA-c (chemotherapy). He was given Zofran (anti-nausea med) at 1:30 and chemo began promptly at 2. He will receive ARA-c at 2 pm today, 2 am, 2 pm Tuesday 2 am, Peg shots Wednesday morning and hopefully we are free late morning on Wednesday. We'd really prefer not to spend New Years Eve in here so say a prayer all goes well for us.

Kyle had a great week last week and even enjoyed some basketball and football Sunday with his buddy Justin.

Santa brought Kyle a new cell phone that he truly loves so if anybody wants to give him a call or text him, here is his number (of course I should ensure he has unlimited texting huh?):

303-570-1786

Ty is in Missouri with my dad, Riley is at her buddy Taylors house, Jen is taking care of the dogs and Nut, and here we sit watching the chemo drip in.

Please pray for an easy round of chemo for Kyle...

Denise and Kyle

Friday, December 26, 2008 2:40 PM CST

I hope you all are coming out of your Christmas state of mind and having a nice and relaxing Friday.

We opened gifts here at home in the morning and then headed over to my mom and dad's around noon. We enjoyed our *Thanksgiving type* dinner (per our request) and devoured every cream puff we could shovel into our mouths.

My brother Brandon and his family were there as well. His children got the Wii for Christmas so they brought it over to my parents so we could play. We had a few Dodgeball tournaments and then became addicted to playing tennis. The competition was fierce as Brandon knocked over the lamp a few times and clearly needed the entire family room to play! Eventually we got Kyle to jump in which was awesome. He always feared playing because he favored his right side due to his broviac. It brought a smile to our faces to see him get into it once again.

A few great friends also stopped by (Jen, Susie, Gil, and Grandma) for a Christmas margarita. It was great seeing them, even if it was short visit, I sure adore them and I think we can call them family.

After the Wii games (we finally let the little children have it back once the competition was over), we began to play a little fun poker game. Not sure who it was fun for as I was in and out in no time (glad I'm not competitive). And besides, getting knocked out of the game early allowed me to stuff more food in my face!

Around 10 pm we headed back home with our gifts in tow. I think the children had a great day and I sure did my best to ensure it was a special Christmas for all of them. It's been a crazy year for ALL of us.

Today, I am starting to take down Christmas since we are heading back inpatient on Monday. First of all, I have no idea what to expect with stinkin' ARA-c (currently my thoughts are not all that great) and secondly, I do not want to end up inpatient the majority of January and still have signs of Christmas around the house.

The kiddo's are all playing with their gifts today. They seem quiet but content. I am trying to motivate myself to *nest* for the hospital. I tend to think of it as *nesting* because I have no idea what to ever expect from our stays there. I do want to reassure you all that I make every attempt to remain positive in thoughts!

Please keep all of your positive thoughts and energy flowing our way as well...! Ty is heading to Missouri with my parents tomorrow for just over a week so Kyle, Ry and I are on our own through this inpatient stay. Of course, Jen will help hold down the fort (thank you thank you, you know I love you)!

I hope you all have a fantastic rest of your holiday weekend...

Hugs...

Denise

Wednesday, December 24, 2008 4:38 PM CST

Christmas Eve...I love it! I am so happy to see the excitement on the kiddo's faces as Santa approaches tonight. It's all about the kids, and as many of you know...I am all about the kids! I'd have 100 kids if I could!

We went to clinic at 11 am this morning and it was a quick visit. His counts are listed above and all of them are really good, I'm shocked he even had chemotherapy just a few short weeks ago. He amazes me, his strength and courage are phenomenal. I am so pleased that as of this moment we are not inpatient!

I had a delivery of Neulasta to the house yesterday to have on hand (this is the shot that helps boost his white count). His next appointment in Monday, we go inpatient at 11 am and start prehydration for that nasty chemo, ARA-c! But today, we are enjoying our day together and tomorrow we will most certainly do the same!

Thank you to so many of you who have sent us gift cards recently. I was able to get the kids wonderful gifts for Christmas this year, because of you! Most recently, a HUGE thank you to the Broomfield United Methodist Church Men's Group...the extreme generosity of the Target gift card allowed me to finish up Christmas shopping, grocery shopping, and some hospital shopping all in one trip. I cannot thank you enough for that. Thanks Jayme S (Kyle's teacher) for the Christmas gifts on our porch when we arrived home from Children's this afternoon.

Mrs. Claus happened to find a new Peanut cage for Riley so I know she will be thrilled to see that gift tomorrow. Santa must have recently been in Georgia because he sent us a tremendous letter last week...that was awesome! The many Christmas cards we have received are all hanging on our banisters as well...I am just so amazed each and every day.

Your guestbook entries are so appreciated as I had a *struggle* day on Sunday with this entire ordeal. You all lift me up and fill my heart with your care and concern for myself and our family. Thank you!

I hope each and every single one of you have a wonderful evening tonight and a fantastic Christmas. Just as you all pray for me and my family, I pray for each and every one of you. I cannot thank you enough for helping me through this terribly difficult journey.

Merry Christmas and may all of your dreams come true...we just have to *B*E*L*I*E*V*E*

Hugs from Colorado...

Denise and the kiddo's

Sunday, December 21, 2008 10:19 PM CST

I often wonder how many days in a row I can have what appear to be "good" days. Days where the kids and I can almost think about *normal* things and it appears as life is good and we can laugh. Then other days it's like a huge storm with black filled clouds have floated over the Lindgren house and we are smothered in a nasty snow storm. We can't seem to shovel out, we are buried. It takes every ounce of me to make another path out the door as I stare at the sky praying for the mere glimpse of the sun, hope that the storm will subside, the snow will melt and we can carry on like we used to, like we ultimately want to...!

I find myself depressed at times, filled with fear, hurt, and uncertainity. Alone. Alone because I am the only grown up in this house...with responsiblilty to keep it together for everyone so to speak. Then I read about a little child missing or hear about the unnecessary death of a young boy because of some act of stupidity. I hurt for their parents, the sudden death or loss must just be devastating. I know that I have Kyle, regardless of fighting cancer, he is here and I can still hold him and love him as often as I would like. I then feel guilty for being sad about our situation. Yet I am also NOT naive to the reality of what we are facing, I know with all of me the risks that we face, the statistics that lie around the corner...and I am back to being scared and depressed for us. I'm scared because I find myself saying, "I don't think I can do this!" So many people believe that I am just this strong woman...and I agree, but what I am being asked to do here is insurmountable to me. I will do my best because I have to, but I fear for me as well.

This journey, this hell that we live in is such a rollercoaster ride. I can't even begin to describe it to someone who has not battled it themselves. Sometimes, I find myself begging to get off of this ride. The twists, the turns, the uncertainty of what lies ahead of us scares the heck out of me, the reality of it all is so hard to digest. I know of the success stories, and wow do they give me HOPE. I also know of many young children who have lost their battle and it tears me up inside. I find my breath shortening and many times I catch myself holding my breath. Thus the whole *one day at a time* life that we live, it's my only method to survival.

I wanted to attempt to forget about this journey and enjoy our week home yet I can't stop those random images from climbing into my head. I wish they would stop, I wish with all of me that they would go away...just let me enjoy another week at home with my babies, that's all I ask! Why isn't it that simple?

I do have a positive thought that hits me too, I am grateful we caught this relapse early enough. He was strong and doing well...he had 18 months of rest, to strengthen both physically and mentally. Sure we are already worn down and tired yet that little reprive we had seems to help us, it's to our advantage. I feel I have that to hold on to...and trust me, I will!

The kids are already in bed and I just feel sad tonight. I know I have a strong amount of faith in me. I believe, oh boy do I believe, I have to...however, that doesn't stop me from being scared to death inside. I not only feel lonely through this journey, I feel like a part of me is just so torn to pieces that I don't even know how to begin to fix it.

I haven't been to church since the relapse on October 8th. Part of me is scared to go...I have no answers as to why, maybe I'm scared to open up the flood gates, agraid to share that with anyone. I am terribly famous for bottling it all up inside, again my fear of trust probably. So typically, I will sit with a glass of wine and cry my eyeballs out til I can cry no more. Then, I suck it up, hold my head high, and carry on as I "think" I should.

I don't know, I'm lost and rambling tonight...getting it out as tears pour down my cheeks. After all, this is what journaling is all about. It's my release, my ability to put down all of those random thoughts, emotions, hurts and fears. At times, I tend to forget that I am sharing this with the world but I can almost guarentee there is at least one of you shaking your head because you know...you know how I feel at this very point in time! It's as though you wrote this entry yourself. And for some reason, that makes me feel less alone...

Please continue to pray for us this holiday season as we are about to embark on a very difficult journey. Probably the most difficult of my life...the fight for my sons life!

Hug your loved ones and please enjoy the holidays with them. Cherish every single moment...

Nighty night...

Denise

Saturday, December 20, 2008 4:13 PM CST

The weekend before Christmas...I can't imagine how busy it is out there today. I have thought about going to pick up a few things yet I can't fathom going out into the crowds. I sometimes find it amusing to watch everyone fall over themselves for the materialistic approach to Christmas yet I think today, I am staying in.

Riley went Christmas shopping with her dad today and then she is having a sleepover at his place. Kyle is over at my mom's having chicken wings and some much needed Nan time. Ty is playing on his computer and I am finally taking a rest on the couch.

Yesterdays, appointment went well. Kyle's counts are very good so no transfusions for him. I am going to take him back in on the 24th to ensure he is still doing well.

His next admission is the Monday after Christmas for that stinking ARA-C and peg shots. We should be in Monday through Wednesday and then again the following Monday for another round of ARA-C and peg shots. His protocol says he will stay inpatient until we have count recovery. I do know the last time we did this, we were in for 16 days straight with side effects and low counts. Personally, I am trying NOT to think about it. I want to enjoy today, tomorrow and Christmas...

Thank you to Sarah Richardson in IN for the super cool Bronco t-shirt (he told me I can't steal it so he must think it's super cool too). Thank you to my Uncle Darin for the box of Air Force and Iraq stuff. I too want to steal those t-shirts but was quickly told NO! Thanks Michelle (Maddi's mom) for coming to visit us today, it was super great seeing you. My world feels like it is crashing in at times and it helps so much to have those fellow cancer mom hugs...I know you get it! We look forward to tackling those puzzle books you brought us as well. Thanks to Mary (my sister-in-laws mom) for the Batman movie, movies are always welcome...I have a feeling we will be watching TONS of them!

Denise is doing OK. I have my days, moments, and hours but I am holding up. I don't talk about the future right now, it kills me inside to "go there". I'm certainly not in denial...I'm just not mentally there. I know I have to prepare and I will. I just want to cherish these good days!

Thank you for all of the prayers, cards, well wishes, love, support, and thoughts! We are doing pretty darn good right now...all things considered!

Have a great weekend...don't forget to hug your loved ones!

Denise

Thursday, December 18, 2008 9:12 AM CST

I hope today finds you all doing well and prepared for the holidays! I always think I am ready for the holidays and then I start to wrap and begin to panic. It doesn't help that I have a little girl with a *wish list* that just keeps on growing. I will wrap a bit today and see where I stand.

Kyles counts from the other day are listed above. Amazingly, they were awesome. His hemoglobin is a bit on the decline yet I was impressed overall. We are heading back in tomorrow for counts again, I just want to make sure he is good for the weekend. He is scheduled for a possible blood transfusion so we will see.

I wanted to thank Jax and Cyndi for their amazing Pay It Forward campaign they did for Kyle. She said they had over a 100 people register to be on the donor list at their drive in NY. That is awesome news! I wish we could find a more solid match for Kyle so please, if you haven't already...please join the registry. You can still contact DKMS (info above) to have a kit mailed to you. It's a simple swab of the cheeks and we all know, you can help save a life...possibly Kyle's!

Thank you to the Avery family in Rockville, MD for the great gift box. We loved it all so thank you, thank you, thank you. Thanks Boni for the notes to Riley to help her feel more special....!

Another quick thank you to those that have donated to A Cure for Kyle. I certainly appreciate the financial donations as we inch closer to transplant. Who knows what the journey holds so having that extra bit helps alleviate some of my day to day stress. Lots of deep breaths around here and certainly living one day at a time.

Thanks for stopping in...we are kicking cancer butt as we prepare for a wonderful holiday here at home!!!

Denise

Tuesday, December 16, 2008 9:26 AM CST

Good morning...

Sorry for the lack of updates, I guess we've been busy settling back in a bit. Of course, I don't want to settle in too much as I can already see the chemotherapy from last week starting to take affect on Kyle. He is beginning to get the pale look with dark eye circles, a bit of a tummy ache, and lack of energy. It's a good thing we head in today to Children's so we can get a count check. I don't think we need to "refuel" him today, however I do think we are getting close. I continue to pray we can just be home for the holidays and enjoy being together as a family.

I have so many things on my "to do" list that I'm starting to get a little frazzled. I should just jot them all down and start tackling them yet that's just another "to do" right???

I will keep you all posted on his appointment today. We head in around 10:30 this morning. I am also going to get to see "my baby" (Bella) today...which makes me VERY happy. I haven't seen her in over a month when she had her last sleep over with us. The kids cannot wait to see her!

Off to get my lazy teenager up for finals...pray that boy pulls it off or it will be another summer school kind of year for him!

Cyndi, can't wait to get the results from the Pay It Forward Drive Jax did in honor of Mr. Kyle. Don't forget everyone...if you didn't make it, you can still contact DKMS above and have a kit mailed to you, you do not have to live in NY or attend an event!!!

We will find a match for Kyle...

Enjoy your day, and if you live in freezing Colorado...stay warm!

Hugs,

Denise

Sunday, December 14, 2008 9:54 AM CST

We are home and settling in...more soon! Thanks for checking in on us!

Friday, December 12, 2008 10:22 AM CST

Happy Friday and a good morning to you...

we are still here at Children's waiting for him to *clear* the chemotherapy. They just said they are going to do another level at 11 am (at least two hours for results) to determine if we are free to go home later today.

Yesterday was just a day of hanging out and Kyle relieving his bladder really. Pretty boring actually.

Jen and Ty came in last night and brought us a few boxes that were sitting on the porch for us. It was like Christmas here as Kyle dug through each and every one.

Thank you Laura Casas in Houston for sending the box of WOW goodies and gift card. Kyle blew the little sword up right away and of course big brother scored a few things out of that box. Thank you Kim Shanahan for the gift basket of goodies. The books and game will certainly come in handy as we try to beat the boredom today. Thanks to Margie Miller in Florida for the coffee creamers...those are staying packed because I tend to forget my hazelnut creamer and needless to say this coffee is not in the top 10. I did trade Ty a piece of gum for the silly socks...ok not really! Thanks Mindy for the cards and gift card, I sure miss hanging out by the fire pit with you guys!

That's it for now I suppose. Kyle is playing one of his many terrible shoot 'em up games on the Xbox and I will find something to entertain myself on the computer I'm sure. I really want to get home and work on Christmas presents...

I will keep you posted on our release! Have a super Friday!

Denise and Kyle

Wednesday, December 10, 2008 7:03 PM CST

Evening from lovely room 723, with a fully functioning XBOX 360 and two starving little people!

Today was a pretty quiet day around here. Kyle's chemotherapy stopped running around 3 pm. They drew his first set of levels but no results are in yet. Of course, we expect them to be high since it's the first one and the chemo just stopped flowing through his little veins.

He is doing very well so far. We just had a Webkinz battle, any of you Webkinz people out there that want to get online and be his buddy...his user name is: kylelindgren1. He is kicking my butt in the tournament area.

ENT (Ear Nose Throat) came in and scoped him with the "noodle" through the nose. They said their is a nodule on his vocal cord. There theory is he needs speech therapy for six months. This of course doesn't really explain the terrible pain he feels when he is neutropenic. They said to call next time we are in with pain and they will scope him again. I don't feel satisfied with their observations...I'm not sure the doctors up here will be either.

Thanks Ed for calling at just the right time...I believe we are going to get dinner tonight from the outside world after all!

Soooo...here we sit waiting for him to pee out the chemotherapy they just put in. Dr. Albano also said they will do everything possible to ensure his counts are good for the holidays! Party party!!! Mom said she'd make Thanksgiving dinner for Christmas since we missed it all. We are also considering a Kyle birthday cake since that was so impromptu as well! I know, we are silly (it's the little things that please us)!

I remember when he was little and had to do this exact block of therapy. I explained to him that they would put the chemotherapy in him for 24 hours straight and then once he pee'd it out, we could go home. He looked at me with such serious little eyes and said, "if they want me to just pee it out, why did they put it in me in the first place!?" Awww...such a smart observation for a then 6 year old!

Please pray we are home Friday...!!! We want to just be our cute, simple little family once again this weekend!

Nighty night from a so happy "real" food is on the way twosome!!!

Tuesday, December 9, 2008 7:34 PM CST

We are all checked into room 723 and chemotherapy is running.

We arrived a bit early but left home early due to slushy roads. They immediately hooked him up for hydration and we sat, and sat. His spinal tap and methotrexate in the spine (IT MTX) were scheduled for 2:30 pm but luckily a space opened up and we were in at 1:30 pm.

Unfortunately, all of the rooms were full on the inpatient unit so we had to wait and wait. They started his high dose methotrexate by 3 pm which means...it must run for 23 and a half hours, which means...it will be done running tomorrow afternoon at 2:30 pm. He will then get a *rescue drug* called Leucovorin to rescue him. At that point, we sit and wait and sit and wait until his body clears the chemotherapy to a safe level and we can go home! This is expected to happen on Friday, and we hope it happens too! We'd love to be home for the weekend.

His counts looked good today:

WBC - 3.7
HGB - 9.6
Plt - 175
ANC - 1850

Right now we are waiting for pizza to be delivered and the maintenance crew to come fix this silly XBOX. Apparently, he cannot get to XBOX Live to play his games and I feel as though his controller is about to come crashing into my forehead at any point.

My mom just left, thanks for hanging with us once again and thanks for Horton Hears A Who. She is heading to Mexico tomorrow...awwwww, I can only imagine!

With that quick update, I am going to rush the tv guys before I become a patient at a local hospital myself!

Thank you Sean Doherty from NJ for the amazingly great gift box. He wore the sweatshirt in today, it was sooo cold here. I wanted to take a photo and post it but the sweatshirt is off already. I will do it soon! I also appreciate the Bath and Body stuff!

Please pray for a smooth 23 1/2 hours of chemotherapy...

Denise and Kyle

Monday, December 8, 2008 9:29 AM CST

Monday morning and a warm cup of Holiday coffee in hand...the kiddo's are in school (except Kyle of course) and I have a small "to do" list for the day, things are OK! Well sort of! I have been getting a few hints from some loved ones that I am becoming *distant* lately and it's from more than one of you!

Let me sort of attempt to explain here, I have become aware that I am reverting or pulling away from you all. You see, I am dying inside. When I told God that I wouldn't be able to take anymore, that I've reached my limit...I meant that well over a year ago. I have no idea how in the world I am going to do this. I am terrified beyond words so I find it easier to hide (at least for now) away from the world. Try to bottle up my pain and sorrow so that I can go back into the world appearing put together.

I have had this image of being so amazingly strong, this *super mom* portrayl and yet I'm not. I'm just a mom who was given a horrible situation to deal with. I am doing the best that I can, the best that I know how. The part that is difficult is that I have serious trust issues. Past experiences have hindered my ability to feel as though I can rely on or trust others with my feelings and emotions, mostly for fear of getting hurt later. It's hard for me to share myself the majority of the time. I keep things bottled up and *hide away* from the world until I can compose myself once again and put on that smile.

I don't know how so many of my cancer mom's do it. I don't know how we survive watching our babies suffer, hurt, and struggle for their lives...and some babies lose their lives to this terrible disease. I don't know how anyone picks up the pieces or ever recovers from this, I honestly don't.

I'm hurting, there is so much unbelieveable pain, hurt and fear in me that I'm dying inside...and for that, I am so terribly sorry if any of you feel as though I am upset with you, or any other thoughts you might have. Kyle is my baby...my sweet, innocent little boy and I can't make him better! It's killing me! I don't know how else to deal with it right now...

with that, Kyle's cough seems to be getting better. Today we are going to pack up for our stay at Children's this week. Please pray it all goes smooth for him and that we are out in that 3 to 4 day window! Please come visit us if you get a chance. Mom will be in Mexico and Jen has my house under control...! We love visitors!!! Just call first, Kyle might want some *real food*!

Thanks for understanding...

A struggling Denise

Saturday, December 6, 2008 9:52 AM CST

Yesterday morning we went into clinic for Kyle's terrible cough and to check his counts. The nurse practioner listened very closely to Kyle and felt that everything was all clear in his lungs. She offered to do a nasal wash and/or have xrays taken of his chest but she felt confident that was necessary. She said she would proceed how I wanted her to.

My gut instinct was that we do not need to do that just yet. She gave him a cough suppressant medication (which has worked very well so far yet it makes him VERY sleepy).

His counts looked good (thank you Neulasta shot):

WBC - 5.7 (was 1.0)
RBC - 3.24
HGB - 10.5
Plt - 71 (needs to be 75 for high dose MTX)
ANC - 3876

We were there for quite awhile. On our way home we stopped off at Walgreens to fill his medication and then came straight home. He took a half dose and was out for hours.

When he woke up, we made dinner and watched a movie. After the movie he started to have the chills and freezing cold feet and hands. UH OH!!! I took his temp and he was flirting with a fever once again, 100 degrees!

I gave him his night dose of medication at 9:30 and tucked him in. I then tucked myself in too because who knows what the night would bring for us. I do know the ER was one ,I did not want to be anytime soon.

Luckily, when I just went to check on him this morning, no fever!! My heart is breaking for this little boy. I have been terribly frustrated, worried, scared, mad, sad...you name it. Last night, I lay in bed and just ask, "where are You in all of this!?"

Today, hopefully Kyle will stay fever free. I need to clear out my old storage unit by today and then we will just hang out and enjoy home!!! I think I need to work on Christmas a bit too, I just fear we might be struggling last minute this year!

Enjoy your weekend...please continue to pray for Kyle in every way imagineable!

Denise

Friday, December 5, 2008 9:05 AM CST

Good morning...are we all glad it's Friday?

Yesterday was my very long meeting with Dr. Quinonas and the transplant team at Children's here. The traffic was terribly backed up due to snow fall (yippee) so I had a long slow drive in. I listened to very loud upbeat music to take my mind off what the next 4 hours would bring. Half way there (it took me just over an hour), I started to tear up a little bit and had to give myself a mental pep talk that went something like this, "this is not an emotional meeting, this is a factual meeting. I need to put the emotions aside for a bit to gather all of the information!" It worked and I was able to do just that, well OK I had a few hands to the forehead and temple rubs during the meeting.

I don't feel there were any real surprises in the meeting. I did learn a couple things however:

1. It was confirmed that Kyle would be sterile when all was said and done (which I knew but had to hear I suppose).

2. Kyle has a "disease" so to speak (and I didn't write down the terribly long name but will go back and get it), with the large amount of moles on his body. They are questioning what radiation will do to impact all of that. It is highly possible he will end up with some form of skin cancer or melanoma (my thought was something like this, "screw cancer!"

3. I have to compose a list of 6 people who will be allowed to enter BMT during this period and I must think the list through completely.

4. They do not have a good unrelated bone marrow donor at this point in time but they do search the registry all the time.

5. They have some cord blood matches and we may be asked to join a *study* where they are attempting to transplant two different cord bloods rather than one.

For now, my head still spins and I didn't really dig into the folder they sent me home with. I simply couldn't digest it all in one day...and I feared another terrible migraine.

With that, Kyle's cough is worsening and was almost out of control last night. Rather than hit the ER once again at 3 am, I gave him some Deylsum to tide him over. I am going to run him into clinic this morning for counts and an exam. I cannot believe we are starting chemotherapy again Tuesday. Part of me wishes we could get some form of delay with how his body is doing right now! My heart really aches for him. I drove home last night (slowly) and I just kept thinking about Kyle and how he has been one terribly sick little boy...it kills me inside! I want to take him away from all of this yet I know the true fight for his life is quickly approaching. I'm scared!

I will keep you all posted on our appointment today, my gut says to pack a bag or two...just in case!

Please continue to pray for Kyle!

Denise and a coughing Kyle

PS: Thanks Natalie for the package and gift card yesterday. Thanks to Mary Mantz for the adorable bear. Thanks to you wonderful St. Charles Group for EVERYTHING! Thanks for all of the input on the guestbook about Miss. Riley and her letter to Mis Clos.

Wednesday, December 3, 2008 2:02 PM CST

Kyle is doing pretty well. I think he looks pale but he says he feels pretty good. Jen and I were able to fix the television last night so we all sat down to watch a movie together. Yippee!

I just had a telephone conference on Bone Marrow and Cord Blood Transplants put on by the National Bone Marrow Registry. It was informative for the most part. I have the task of compiling my list for the transplant team tomorrow. I am meeting with the team from 10 to 1 tomorrow for our initial (hit me in gut) meeting. Cyndi, I am heading out after this to buy the tape recorder. I am also working on my list of questions, I've gotten some good lists from a few fellow cancer people anyway.

So at our house we have a "Santa Mailbox", each year the kids put their wish lists or even wish items into the mailbox for Santa. They raise the flag when it has mail to be picked up and Santa's elves sneak in at random times to take their lists. Anyway, Ty and Kyle no longer *believe* in this idea but Riley certainly does.

Last night, Riley put some things in the mailbox and raised the flag. I didn't get to it until just now so I grabbed a very cute bundle tied with a green ribbon. There was her "wish list" (I think her second one now) and two cards. One for Santa with the following scrolled across the front, "PS: Peanut Big Cage and two toys for Peanut" (Peanut is our very loved guinea pig). Then as I opened the card I read the following "Dear Santa Sorry about the blue on the front. I toldale balev you are reall. the card with the tree is for miss. clas. So this is for you Love Riley Lindgren" She then drew a picture of a tree with snowflakes, a few presents under the tree and a Merry Christmas sticker placed on top. Very cute...! I almost felt like I violated her trust reading her card to Santa.

Then the card to Miss Clas from Riley Lindgren:

Dear Miss. Sana. Proble most kids dont care abot you much. But I never ferget you. Santa mostle gets etachin. I know hawe you feel my brother gets all the atechin. Love Riley Lindgren" and a photo of her and a "pillo" with some stickers.

Do you want to know how quickly my heart dropped to my toes and I just wanted to cry??? It's so hard trying to do everything. I am guilty of being thrown into caring for Kyle once again and the mode of getting him through this. At times, I feel like I am doing a pretty good job as a single parent and that everyone is doing well. Yet, it's the siblings, the "silent victims" so to speak. I needed to read this card, I needed the smack against the head with a 2 by 4 to know that I need to do a better job. I can't be perfect and certainly do not claim to be, yet the awareness just gave me a little wake up call. I know I'm trying...with every ounce of my being, I am trying to do this!

So as I feel a bit guilty for seeing the personal thoughts of my daughter, an 8 year old little angel, I am glad I was made aware of her feelings and will certainly do a better job at meeting her needs as well!

A sort of speechless mom (imagine that?!)

Tuesday, December 2, 2008 6:26 PM CST

Awww...it feels so good to be home! We were just wiped out yesterday once we got home. Thank you ML for the adorable package in the mail, Kyle was thrilled he chose the penguin mug. Now he is very into penguins. We had to go to Target today and pick out a few penguin ornaments for our tree. We were decorating it last night and he realized we didn't have a single penguin ornament...but now we have three!

Today, Kyle slept in a little bit. I had to do some catch up things around the house after being gone for so long and then being gone again next week. I have a feeling Children's will be our home away from home very soon. I still can't believe he is back on the chemotherapy bandwagon next Tuesday...ugh!

Kyle and I ran a bunch of errands together this morning. I love having a little sidekick with me. We hit the bank, post office, Blockbuster, Taco Bell, gas station and SuperTarget (phew, we did a lot)!

He was so run down and tired that while I was putting groceries away, he snuck up to bed and took a pretty good nap. Currently, he is playing with Evan from next door. I love that he comes over to visit Kyle. Sometimes, I feel that Kyle is too isolated so Evan is good.

We finally got the part for our television today. It hadn't been working for over 2 weeks now but hopefully tonight someone will come fix it for me. We haven't missed the television much at all, yet when we just want to curl up on the couch for movie night...then we miss it! I also think Jen is having Wii Fit withdrawls!

With that, I am going to finish up my rather large "to do" list.

Thanks for checking in, please pray for my sweet Kyle as we embark on this journey called "transplant".

Denise and a sore little boy named Kyle (I think his white count is finally chugging out cells from his marrow, which is good news of course!)

Monday, December 1, 2008 10:37 AM CST

Happy Birthday to Kyle...Happy Birthday to Kyle...Happy Birthday dear sweet Kyle...Happy Birhtday to YOU!!!

We stayed up until midnight so Kyle could ring in being 12. We had a really good time and our nurse came in to sing for him as well. He opened his gift from me (thanks Jen for picking that up) and then we went to sleep.

We woke up around 8 this morning and Kyle said, "did I have a fever?" I asked if he recalled being woken up to swish down a tylenol. "nope!" was his answer and there you have it...KYLE IS GOING HOME FOR HIS BIRTHDAY!!!!

They are working on discharge papers as I type, and said we should be out of here by 10 am (20 more minutes). We do not have to come back until next Monday...a whole week away!!!

We cannot wait to get home, see the puppies, Peanut our guinea pig, sleep in our beds and begin decorating for the holidays!!!! Woooo whooooooo!!!! Party party!!! Celebrate!

I am going to go pack up so we can blow this popsicle stand!

More from HOME SWEET HOME later...

Denise and the very handsome 12 year old birthday boy!

Sunday, November 30, 2008 10:50 AM CST

Good morning from Room 721...

Here we sit still! Let's see, this morning his counts were finally on the rise. His white count is .5 and his ANC is 98. He did get a bag of blood yesterday so ihs hemoglobin went up as well.

He is off the IV pole (that addict...told him I want to buy one on ebay for him at home). He is drinking and eating better. He finished off some chicken fries from Burger King yesterday and that got him eating again. We just ordered breakfast, the new hospital has room service now. You get a menu and can order what you want, when you want it. It's a pretty good concept, although it doesn't make the food taste any better.

The bad news is Kyle continues to fever. It's not a consistent fever, just randomly shows up when we think it's gone. Just enough to tick us off and keep us here.

The bummer is I think he is scheduled to be inpatient next week for more chemotherapy (high dose methotrexate).

Tomorrow is his 12th birthday so maybe his present will be a get out of ~~jail~~ the hospital free card. As I type he is over in his bed chanting, "no more fevers, no fevers!" Please chant with him!!!!

I tried to get a little bit of Christmas shopping done online last night. Guess I am being productive, sort of.

Thanks mom for bringing us food and smiles yesterday. Thanks Jen (my pro bono personal assistant) for everything you do, and rumor has it your parents have been busy at my house as well (thanks guys)!

We want to get out of here and decorate our house for the holidays. We picked out our special ornament from the gift shop yesterday, so we really want to get home and decorate our tree!!!

I think my writing is all over the place, sorry for that. I think you tend to lose brain cells while sitting in isolation! I pulled out the window markers and decorated our window with a big, "I LOVE KYLE". We also brought in the glow in the dark bracelets that were sent to Kyle and made a chain last night to hang in our room. We are trying to keep ourselves busy...breakfast just arrived, gotta run!

Denise and a getting too skinny but perking up Kyle

Friday, November 28, 2008 6:04 PM CST

Good evening...

Still inpatient and still just sitting. We have watched The Deadliest Catch marathon, and it's still going. Jen is out searching for soup for Kyle. He is ~~in trouble~~ gently being reminded he needs to start eating. His throat hurts too bad so it's hard to eat he says.

Dr. Quinonas (I'm sure by the end of transplant I will know how to spell his name properly), stopped in today again. He thinks we should have his throat scoped the next time he is under. I much agree, he is clearly in pain and it's been over a month since his voice has worked and I sure miss it.

All cultures are still negative (which is good). His blood pressure is still low as well. He did get up for a few minutes and started doing some little exercise, guess what? His next bp reading was much better. I think we are going to get him up and moving more. Fevers did return today for a bit. I believe we have no home in site until he has some signs of count recovery....so here we sit.

Jen just brought some soup for Kyle and a few movies, guess you all know where to find us...

pray, pray, pray!

Denise and a skinny Kyle

Friday, November 28, 2008 11:02 AM CST

Good morning...

I guess I can start with I have no real idea what is going on around here. We are still tucked into Children's, his blood pressure continues to be low, and he is getting platelets as I type. I was told he was fever free all day yesterday and cultures are all still negative so far. This morning our nurse told us that he had a low fever reading, they started more cultures, and then when they checked his temp again, no fever, and he hadn't received any tylenol.

I do know he is very tired and trying to eat a little bit. His throat hurts again, pretty badly so we are trying to keep things simple.

We are watching marathon "Deadliest Catch" today while many others are braving the stores. At least some of you might be. Kyle's birthday is Monday and I NEED to get him his gift...hopefully we can break free this weekend. I thought it was looking good until the blood pressure is becoming an issue. His platelets were 7 this morning (new bag of them just finished infusing), his ANC was 12 I believe.

I guess I have no answers, I am frustrated, concerned, and tired. We are hanging in there, I wish there were more I could do for him.

Thanks Jen for coming to visit us yesterday, thank you mom, Teresa and Dalton for the Turkey Dinner. Thanks Mark and kiddos for coming to hang with us last night.

I am going to go snuggle up with him and watch some television. You all know where to find us...room 721.

Keep us tight in prayers, I want him to get better soon.

Denise and the little boy who needs to get his blood pressure going and grow some healthy, strong cells soon!

Thursday, November 27, 2008 12:28 AM CST

Happy Thanksgiving from Room 721 at Children's Hospital.

I am not even sure what is going on here. I assumed he was having low counts from last weeks chemotherapy. He is now having low blood pressure issues. They have him on anti-biotics and are checking his bp every 1/2 hour.

The BMT doctor came in and mentioned maybe sending him down to PICU, do you want to see me have a serious panic attack? I think my heart rate is racing.

He just had his second urine output since being here last night. It's very dark and concentrated. They have run tons of fluids through him to hydrate him.

I am going to go snuggle with him, please pray for a speedy recovery for our sweet Kyle!

Denise

Tuesday, November 25, 2008 9:31 AM CST

Wow, wow and wow...the love and outpouring is amazing!

Kyle and I went in to Children's at 8 am for his counts and more bloodwork for the HLA typing and future transplant. Since we had a really busy day planned and it didn't include staying at Childrens, we should have known we would have to stay for awhile.

Kyle needed not only one bag of red blood, but TWO! This put us in for 3 hours of transfusions. We walked down to the cafeteria to grab lunch while Nurse Beth ordered the blood from the blood bank (thank you inserted here for each and every one of you who donate)! Once we got started, Kyle and I drug out the only entertainment in my bag, a word search book. I can't even begin to tell you how many of them we did in our three hours but I do believe we are due to purchase a new one soon. He is getting super good at spotting the words quickly.

We left the clinic around 3 and headed home to get over to the bone marrow drive. Kyle was exhausted to say the least, so I dropped him and Tyler off at my parents house so my dad could watch him. They watched a movie, ate some pizza and took a bit of a rest.

I hustled over to the drive, first and foremost, I have to give a hug applause to Jen (my rock star, pic above), Bonfils, and Westlake Middle School staff. I wasn't sure what to expect at all and I was amazed at the packed cars in the parking lot. I had no place to park, at least no legal place to park.

I walked into the cafeteria and it was AMAZING!!!! The entire place was packed at 3:30. The line to register was wrapped around the entire room (photo above yet I couldn't get the entire line in the photo). The tables were filled with faces, some familiar and many not so much, filling out the paperwork to register. The volunteers were rushing to push people through.

I stood there in awe with the principal, Paul Gordon. I could not believe the number of people who came out from across the Denver metro area to register to be on the bone marrow list because of Kyle's Story, my brave little boy! People and their love never cease to amaze me, thank you so much to all that came out.

Word spread quickly that by 4:30, Bonfils had already went through 200 swab quits. The panic set in that we would run out of kits, we were told they brought 400 and we should be good. I scanned the room and saw family, friends, firefighters, teachers, strangers, neighbors, business people, moms with babies, dads, young and old...oh my goodness what a feeling that is so hard to put into words for you.

The consultants who were selling items lined the room with great products to sell with some proceeds going to A Cure for Kyle, a donation bin decorated by Kyle's classmates, guess the number of jolly ranchers, A Cure For Kyle bracelets selling out, snacks, water, auction items, lots of hugs and phone numbers gathereed...what a night!!!

The GREAT news, we went through all 400 kits by 6:15 pm! The not so good news, the over 100 people who still showed up after 6:15 pm to register for Kyle and were told we no longer had kits available. I felt terribly for those that were geniunely sad that they couldn't get on the registry that evening. Bonfils did say that anyone can go into a Bonfils and still join the registry, they did apologize for the shortage. A good MONTH for them is 200 kits...they were not prepared for the HUGE response A Cure For Kyle created!

Kyle did make an appearance with Ty and my dad toward the end of the night. I think he had a good time and I was a bit relieved they showed up when the crowd was thinning, it's a germ thing (no offense)!

I wish I could thank each and every one of you individually as the list would be huge and I would be bound to forget someone. However, I do have to thank Jen Jones and her family for working their tail ends off to make the evening a HUGE success! I am not sure how I could make it without you guys by my side. I know you will forever have my back!

Thank you Paul Gordon, Jayme Schrader (I'm sure I'm spelling you wrong), and Westlake Middle School. What an amazing job you did and thank you for allowing us the use of the building and resources.

Bonfils, each and every consultant, those that donated to the auction, donated a can for the shelter, those that donated beverages and food, donated money to A Cure for Kyle, donated their time and energy, and especially those that came out and joined the bone marrow registry...I cannot express to you how grateful I am to each and every one of you!

We will find that cure for Kyle...in my heart, I know we will!!!

Over 400 registered, more waiting and numerous people from out of state who received their kits online...impressive!!!

From one proud cancer mom and a refueled cancer fighter,

Denise and Kyle

Sunday, November 23, 2008

REMINDER TO ATTEND THE BONE MARROW DRIVE / FUNDRAISER FOR KYLE MONDAY, NOVEMBER 24TH

I cannot believe it's time for the bone marrow drive already. I remember when Jen set it up, I thought to myself, "wow, that's so far away!"

I am so amazed at all of the publicity and support we have gotten through out our journey. I believe the links above are they most recent and pretty darn good if I must say so myself. Thank you to The Broomfield Enterprise, Channel 4 News, Channel 9 News, and Your Hub. Thank you to Northern Hills Christian Church and Westlake Middle School. Thank you to everyone who donated to the auction, those that donated their time and energy, the Consultants for sharing your business and part of your proceeds to us. Gosh, thank you Bonfils...thank you, thank you! I am so anxous to see the turnout tomorrow. I can't wait to see everyone swabbing their cute little cheeks in the name of Kyle and so many others in need of a transplant.

I've had several individuals ask about the purpose of A Cure for Kyle. While many of you know, I have been a stay at home mom since 1995 taking care of the home and kiddo's. Ed and I decided to mutually end our marriage in April of 2007, one week after Kyle finished his therapy from his last relapse. Our divorce was final one year ago. I was enrolled into a paralegal program in order to get my certificate in May of 2009 however, two days prior to school starting, Kyle relapsed for the second time.

While Ed does provide medical insurance for Kyle, there are numerous other expenses related to his relapse (medications, over the counter treatments, gas to and from the hospital, food, etc). I am also unsure as to what insurance will cover and will not cover during our upcoming year or two, or what lies ahead. I continue to be a mommy 100 percent of the time as that is my priority. Without digging too deeply into my personal finances here and now, it is our hope that as a single parent, I will be able to continue to focus my time and energy on getting Kyle well.

With all of that being said, please remember to come out and join the registry at Westlake. It is my intention to be there however, I am uncertain about Kyle at this point. We are getting up early to head to Children's in the morning. He is supposed to be there at 8:30 for more HLA blood typing. He will also have an appointment at 9 for counts and a check up, we will see if he needs a "refuel".

If all goes as I hope, we will be out by 9:30 or 10 so that I can get Tyler to the ortho. He is supposed to be getting his top braces off tomorrow. It's not a celebration of removal by any means. He has outgrown the work the ortho has been doing and it was finally decided that we would remove his braces until he is done growing and then readdress the situation. The ortho removed his lower ones about a month ago and sent Ty home with a retainer. A couple of weeks ago, he told me he lost his retainer. Last week, while cleaning his computer area...I found it on the floor. He was pretty happy about it, until the next day he came home from school and said, "you're gonna kill me!" Apparently, Ty accidently threw it away at lunch the very next day! Grrr...oops he didn't want me to tell his dad!

If Kyle needs a refuel, Ty will have to wait on getting his braces off. I then plan on picking up Riley and heading over to Westlake to help set up. This is all based on Kyle's body cooperating of course. I think I will leave him home with Ty tomorrow for the drive. I just don't think I want to risk the germs and infection potential. I hope you all understand, the only way I would bring him is if his counts are awesome (after 5 all day treatments of chemotherapy, I'm not sure you all should hold your breath on that one).

Thanks Mark and Mary for dinner on Friday. The entire pan of stuffed shells were gone...!

I am super tired, feel like my typing is all over the place, and I'm too tired to proofread tonight. I'm sure you all understand!

Can't wait to see so many of you at the bone marrow drive. I know I have been in a complete cave but tomorrow I will peek my head out and say "thanks!"

Please pray Mr. Kyle stays fever free and has super counts!

until later, from "I can't believe the Raiders beat the Broncos" sleepy and quiet home...

Denise

Saturday, November 22, 2008

A note from Jen Jones:

Thank you everyone for all your hard-work, I think we are actually going to pull this off! Currently we have more than enough Auction Items. We have plenty of beverages thanks to Eldorado Water, Izzie Sparkling Juice, Starbucks, Nestle, and Whole Foods. We also have food donations from Whole Foods, Indulge Bakery, Noodle & Company, and local individuals. Those of you wanting to bring food, we are trying to keep it simple...snacks and finger foods. For those wanting to volunteer at the Drive: I could use people during the event to usher guest in the right direction, accept donations, run the auction area, help out Bonfils, and then give the Westlake custodians a hand at the end of the night. If you are interested in helping please email me at jenjoturtle@yahoo.com

Friday, November 21, 2008

Can you believe Will Smith was at Children's today and we missed him??? Ugh...Kyle was excited to hear the "buzz" on the unit and then by noon, Will had left the building. So close!

Yesterday and today went very well. I apologize for no update yesterday as we were both totally wiped out and exhausted. We both came home and crashed until Lynn brought us dinner around 5. Thank you Lynn! Thank you also to Audrey who dropped by with some great auction items, and to Sherrlyn who also dropped by with more auction items. I am so excited at the many thing donated for Monday's event.

Today went pretty smoothly, yet I have to admit that I was a bit disappointed because we were expecting our favorite nurse Lauren to be there. Guess we thought wrong, she must have known I was going to snap a picture of her and Kyle today to share with you all.

We watched Ironman today while the chemotherapy was being infused. That was a really good movie. Thought it might be a "boy movie" but it surely kept my interest. We then grabbed a quick lunch and before we knew it, we were heading home.

Kyle was a bit grumpy as we left. I had told him he had the next two weeks off, when should have been more specific and said "off from chemotherapy". Scheduling informed me that we would have to wake up and call inpatient tomorrow morning by 8:30 am. I need to run him to the inpatient unit so he can get his shot of Neulasta (white count booster).

We also have to head in Monday by 8:30 am. They need to draw more blood from him for more HLA typing. Nobody told us about that but I am certain it's related to possible matches for the transplant. I was told yesterday that we would probably be ready for transplant in February, at least that is their goal. We also have to have his counts check Monday for a possible "refuel" or better known as red blood or platelet transfusions.

Then we get to head in again Wednesday to check counts AGAIN. I'm sure 5 straight days of chemotherapy transfusions will send his counts plummeting, just as they should right?!

His homebound teacher called today, he will begin homebound on Tuesday afternoon. He had just over a month off from school so I'm sure it's time to get him learning again.

Tammy, I think I'm about ready to use that wonderful massage gift card you sent over. I just feel the tension headaches building with each passing day.

I think that's it for now, my head is in a fog and I am super tired. I'm just glad that this week is over and we can try to relax a bit this weekend. I miss my other kiddo's terribly as they have been shuffled all over and when they are home, I'm too drained to be a participating mommy really (long sigh)!

Another article popped up in Your Hub, I attached the link above. I just see my sweet baby boys face all over the place!

Enjoy your weekend, I will certainly do my best to keep you all update! Thanks for the amazing guestbook entries and thanks St. Charles Youth for the constant flow of letters and photos...

Keep those prayers coming!

Denise and Kyle

Wednesday, November 19, 2008 4:37 PM CST

Yippee...we made it home on schedule today. Upon arrival at Children's today, Kyle's urine output was "perfect" as were the words from adorable Nurse Lauren. I think the two 24 ounce bottles I had him drink last night helped out in that area!

Kyle seemed really down and depressed this morning (who could blame him). Nan put Kung Fo Panda in and both Kyle and myself fell to sleep pretty quickly. He was so grumpy that he didn't even let me crawl in with him this time, he simply said, "later." Thanks Lauren for the warmed up hospital blanet so I could sleep in the chair.

He did wake in a much better mood which made for a better afternoon for us all. He was more attached to my mom today, and that's ok by me (sometimes anyway!). He and my mom worked on his Target.com wish list. They giggled and joked for many hours today.

Thanks for stopping in for a visit Jen. We worked a bit on the auction, sent a few emails and took a few calls. Thanks to Children's PR for getting me a DVD copy of the Channel 4 News footage. That is such a treasure to have! I am working on also getting a copy of the Channel 9 News footage.

Two more days to endure of this routine. I cannot believe how tired it makes us. All the way home I kept thinking I'd crawl into bed for a good nap, yet I walk in the door and there are always "things" to do. However, today's things were pretty darn awesome....

First delivery was Kyle's neulasta shot from the insurance company. Neulasta is a shot that Kyle will get Saturday or Sunday at Children's inpatient unit. This is a shot to help boost his white blood count as it will drop drastically from this weeks chemotherapy treatments. Thanks Jen for getting it off our doorstep and into the fridge today.

Two boxes were on our porch as well...Kyle loves surprises. First box was a box from Nebraska! Need I say more? OK I will, enclosed were a box of red Husker t-shirts! I must say they are pretty cute, so thank you to Boni Edwards (from Nebraska of course).

Next package came from Costa Mesa, CA. "Hmmm....don't know anyone from Costa Mesa but it sure is a big box!" Inside were gift bags for each person AND a bag for our dogs (so very cute). Amazingly, in Kyle's bag was a Denver Bronco sideline cap (a blue one) and as he pulled it out, I saw a signature. "NO WAYYYY....John Elway signed a hat to Kyle!" He was shocked and thrilled. I also have to comment on the margarita and salt SUCKERS, what a riot (at that point, I knew you must have talked to Nancy - wink wink)! Thank you to the Brostek family for the package today! I think you all knew Kyle was depressed today!!!

All cards that we receive are on our mantel (it's rather full ) and on the side of our fridge are letters written by kiddo's to Kyle as well as all pictures you guys send so we can feel the love! Thank you, thank you, thank you!

I also received word that Denver Nugget game tickets have been donated to the auction on Monday (thank you Beck family) and a Jay Cutler signed Bronco jersery from a friend of a friend. My parents donated a week at their timeshare in Cozumel as well. I cannot believe the outpouring of love and support we are receiving not only from our community but all over the country. You guys are my light in all of this darkness!!!

Thanks Cyndi for organizing a bone marrow drive in New York on December 15th through DKMS (more information soon). Thank you Natalie for organizing a drive out in California as well.

Thanks Carrie and Christopher for an amazing dinner and for getting Chili's gift cards for us. Thank you to our neighbors the VanDykes for several dinners, comic books for Kyle to read AND the Denver Bronco Javon Walker jersey. A big thanks to Grandma in Rockford for the card and "lunch money" earlier this week as well. Amazing...(I feel like I am on the Emmy's and the music is going to start playing to tell me "time is up lady!")

I just feel so overwhelmed with love and support. It all allows me to truly focus on what's important right now and that is getting Kyle well and curing him once and for all from this nasty, ongoing nightmare.

Oh Jen, thanks for cleaning my home yesterday and organizing the Marrow Drive, see I can't stop, my head is spinning at 100 mph as I don't want to forget anyone...

Good news today, Kyle was not grounded and stayed properly hydrated!

Thanks for all of the guestbook signatures, I read each and everyone out loud to Mr. Kyle and his followers today at Children's. It's so good to hear from you all, so keep 'em coming!

From another sunny day in Colorado...

Denise and Kyle

Tuesday, November 18, 2008 6:28 PM CST

KYLE GOT GROUNDED TODAY! (well sort of)

We arrived at clinic this morning bright and early. Upon arrival, Kyle is required to give a urine sample to ensure he is clearing the chemotherapy out of his system. Word quickly came back that there was a bit of blood in his urine. I began to skip a few heart beats yet our sweet nurse Lauren appeared calm. I asked what that meant and she said that he needs to hydrate more because they chemotherapy sits in the bladder and causes the lining to shed. OK..."go further please"!

Bottom line was Kyle just needs to hydrate better to clear the chemotherapy. It's high dose and can damage the bladder. We will continue to take urine samples and hydrate him more to stop this from happening. If it continues, they can give him a medication (Mesna) that coats the bladder and protects it. So, today...Kyle got grounded by his nurse. He had to stay for an extra hour of post hydration and the fluids ran rather quickly for that hour. Needless to say, Kyle relieved his bladder to her satisfaction and we sprung ~~jail~~ er um Children's just after 3 this afternoon.

Thank you Kim Christensen for running a story on Kyle and the bone marrow drive today on 9 News at 4 (the link is above as well as the other links from this weeks coverage). I thank the media for not only bringing registry awareness but public awareness of Kyle's Story and his particular bone marrow drive.

I anticipate attending the Drive/Auction on Monday the 24th and I sure hope to see so many of you there as well. The gift of life is such an amazing opportunity for each and every one of us!

With that, I have to run and feed Kyle. I am not sure I can keep up with his random food cravings...I sure will keep on trying though.

Thank you so much for the prayers, thoughts, and well wishes. I can feel each and every one of you surrounding us. Check out the media links above, they are awesome. I cannot believe the coverage they have from when the kids were so tiny and our journey into the cancer world had just begun.

Don't forget to sign Kyle's guestbook too, we love reading each and every entry...

that's it for now from a sunny filled day in Colorado, stay tuned tomorrow...I have Kyle chugging bottles of water as I type!

Denise and Kyle

Monday, November 17, 2008 5:37 PM CST

OFFICIAL WORD OF REMISSION CAME IN TODAY FROM LABS! YIPPEE!

After a much needed relaxing and uneventful weekend, Kyle and I woke up with very sleepy eyes at 5:40 am to head to Children's for tody's long treatments.

Jen is staying at the house this week to help get Ty and Riley off to school in the mornings (THANK YOU!) so Kyle and I were able to head out on time. We had the car all loaded up, trash at the curb, and blankets in the backseat the night before so we were well prepared for our journey.

We quickly picked my mom up and headed off to the hospital. We were amazed at the amount of traffic so early in the morning. Yet, we still arrived on time - 7 am.

We were the first ones to arrive in clinic so the halls were surprisingly quiet, the rooms were cleaned for a new day of patients.

We were greeted by Nurse Beth who sent us to infusion room 3. Kyle plopped into bed while I closed the blinds and mom settled him in for a very long day. I must say, the brand new hospital is AMAZING (if you have to be there right?)!

After a few minutes, I was laying next to Kyle and we had both quickly taken a nice morning nap. He was hydrated for two hours prior to chemotherapy being given so we surely got to doze off once that was started. He had to take some oral medications prior to the chemotherapy being started at 9 am.

Again, he had to have "sleepy room"/propfol/spinal tap today with methotrexate (chemotherapy) injected into his spine. This procedure wasn't until 2:30 so we were all starving (yes the rule still holds true, if Kyle can't eat then neither do I).

We received a call late morning from Channel 4 News (Kathy Walsh) who wanted to run a story on our bone marrow drive on the 24th (she also did our story for the Light The Night walk several years ago). We gladly invited her to visit us. Shortly after Dr. Albano finished explaining Kyle's HLA typing to me...along came the news crew.

They did an interview of both Kyle and I as well as took some shots of us. I impressed myself by remaining strong however she was very easy to talk with. On the other hand, when she interviewed Kyle...I lost it. This was the first time I have seen him cry since I had to tell him his cancer had returned. He is hurting so dearly inside and it tears me apart. It broke my heart to see him fight back the tears from his steroid induced chubby cheeks. What an amazing little boy he is, I am so proud of him!

The story airs tonight at 5 pm (yes in 10 minutes) so I am hoping they put a link to Kyle's Story on their website for those that miss it.

Kyle did amazingly well in sleepy room and we were free to leave when he recovered. We went straight to Burger King and got him the Whopper Jr. Meal.

Great news came in from Jen today, we now have Avalanche tickets to auction off on Monday night as well (thanks to a donation from Audrey). We are still in need of food and beverage donations for the Bone Marrow Drive - Auction. I think she text me earlier today to tell me that we struck out with King Soopers. Anyone have any thoughts, ideas or connections???

I have to run, the news is going to be on soon. We are wiped out and tired. Tomorrow we have to be at Children's at 7:30 am so tonight will be an early one for us!

Thanks for all of the thoughts and prayers...hope you can catch the news soon!

Love a very sleepy and tired,

Denise and Kyle

Monday, November 17, 2008 5:37 PM CST

Friday, November 14, 2008 9:08 AM CST

Happy 16th Birthday

Ty!

I can't believe Ty is 16 today, the silent ones who often have been impacted by the illness of Kyle and yet often put their needs aside. Sometimes, it's easy to forget that siblings suffer too. Ty isn't one to communicate very well yet I know he is having his share of battles inside as well. I can only imagine the fear of having a sibling you love so much having a life threatening illness, for 9 years none the less. I have three brothers and if I try to place myself in Ty's shoes, even for a mere moment, the pain would tear me up inside. Ty has been a WONDERFUL older brother through this entire ordeal. He never asks for much or complains, he is amazing with Kyle and helps me in so many ways. Even though he struggles to express his love, I know it because I see it! Thanks Ty and Happy Birthday to you...!

Kyle had a pretty good day yesterday. His dad brought him the NEW World of Warcraft, which was probably the highlight of his day.

After the local paper, The Broomfield Enterprise, finished up an interview and photos at the house (look for article this weekend I believe), we headed out for lunch. We went to a small Mexican restaurant that the photographer had suggested for us. It was very delicious!

When we came back home, it was all over as the boys retreated to their newest versions of World of Warcraft. Riley went on a playdate with her pal Taylor (thanks Claire for allowing them time to play) and I accomplished a few things around here. It's been a month since we moved into our home and there are still boxes sitting around. I figured it's time to just tape them up and put them away, which I did a little bit of. I still have a few in the dining room and my bedroom. Sadly, Kyle's closet is full of boxes and nothing on his wall yet. Guess I have some work to do.

Jen is working full steam ahead on the bone marrow drive and auction. I know she's hoping to get some sporting event tickets to auction off and we are in need of food and drink donations for the event. The drive is during dinner time so we wanted to get some food donated so people can eat, shop, participate in the auction...and MOST importantly join the bone marrow registry. Don't forget to bring a canned food item to ensure that you register for FREE. I'm not sure if she still needs volunteers to help the night of the drive, I would imagine so with how large this event is becoming...and gosh are we thrilled to hear that. For those that can't attend, I plan on taking photos if I can see through the tears that will be shed that night.

Today, Kyle and I are going to sneak in a movie while the other two are at school. He wants to see Madagascar 2 I believe. We are going to use that wonderful AMC giftcard from the Hoskinson Family. I know Kyle is thrilled to get out of quarentine for a bit today.

Thanks to Carrie and Christopher for dinner the other night, the ravioli was delicious. Thank you Susie for bringing us dinner on Wednesday night as well. You know that is one of my all time favorite meals (Tammy's sloppy joes)! Thanks to Nan for the chicken and rice, we ate the entire meal up last night and I think Kyle wanted even more yet that was fine because we left room for dessert!

Thanks to the St. Charles Youth Group in Ft. Wayne, IN for the special package! The three little bears are so adorable and soft, not to mention cute!

Tonight may just be some pizzas for Tylers birthday as I think he would prefer it that way anyway. This weekend should be a relaxing one as we prepare for a full week of Children's hospital and chemotherapy. I think I have my schedule down and children shuffled out anyway.

Sunday is the big race (yes, I'm still watching my #48, Jimmie Johnson), he is on track to win his 3rd straight Cup...so we know where to find Denise from 1-5 on Sunday, glued to the couch, screaming at the television!!! It's not just a bunch of guys turning left by the way...

Kyle's counts are pretty good so if anyone would like to visit before our "week of chemo" please feel free to do so. I know he enjoys seeing everyone (as long as you are healthy of course)!

Thanks for the tremendous amount of love and support you all have shown to us, I know we could never walk this path alone. With the divorce, moving, my latest attempt to get back on my feet, and now Kyle's road to transplant, I'm surprised I am still breathing. I know it's because of each and every one of you, my faith in Him, and the occasional glass of wine (wink wink)!

From an ever so lightly layer of snow on the ground outside here in Colorado...

Kyle's mommy

Wednesday, November 12, 2008 10:54 PM CST

Good evening...

We arrived at Children's clinic at 9:20 this morning for "sleepy room". This is propofal clinic where Kyle is put under for a spinal tap and bone marrow aspiration. I didn't realize he was also getting methotrexate (chemotherapy) injected into his spine today, but he did.

He woke up a bit slower in the recovery room today, which I knew would happen because he was pretty tired going in. His blood counts came out pretty quickly so Nurse Sally brought them in to us (Jen and I) long before Kyle even woke up. I was thrilled to see his ANC of 1200 circled. I immediately said that Kyle will be thrilled because he has been anxious to go see a movie. I scanned his other counts as well (listed above) and was also pleased at how quickly he recovered in his counts. Within a few minutes Kyle woke up and asked what I was looking at. I told him, "blood counts" and he whispered, "movie?" I told him, "Yup, we can go see a movie...!" He was so excited!

I talked to Dr. Albano about his throat and his lack of voice still. I guess I am more concerned than EVERYONE else about this. I bring it up often and it's shrugged off. Today, the nurse registering us in mentioned that maybe his vocal cords were damaged during his broviac surgery. I asked if that was a possibility and she said, "sure"!

Dr. Albano came in and suggested maybe the Vincristine, which would be a first as he has received that chemotherapy MANY times over the years. She did say that since he didn't Vincristine today that we could wait and see if it improves by next week. We will be there every day, five days straight, from 7 am (yes, 7 AM) until late afternoon, early evening getting chemo. If his voice doesn't have an improvement, they will send the ENT (ear nose throat guy) in to examine him and figure out what is going on. I miss his voice, his jokes, his giggles...and whenever he talks, I have to lean in and listen for his little whispers and repeat what I believe he is saying. It's been weeks, and it makes me sad!

After the go ahead to leave with good counts...Jen and I took Kyle to BJ's (one of his favorite places to eat). While we were eating, I stopped the manager and gave him a flyer for the bone marrow drive. I informed him that we are holding an auction that evening with money to benefit A Cure for Kyle. They not only gave us a $50 gift card to use at the auction part of the evening, they also paid for our lunch. That was pretty darn sweet of them!

Kyle has been a lot more brave with his hair loss, although I think it didn't hit him that he was walking into a very busy restaurant...bald...until we sat down. I think it bothered him when he realized he was in public, bald and the true appearance of a cancer boy. I looked around to see if people were staring at him and was quite pleased that I didn't notice that at all. I must say, along with trying to just wrap my head around this still, it breaks my heart...this entire situation breaks my heart into a million little pieces.

The Broomfield Enterprise (our local paper), called for an interview today. They are coming to take a photo of Kyle tomorrow and he asked me about the word "normal". Ha, normal? What is normal??? We've been doing this for nine years, what is normal? We live day to day, one day at a time. EVERYTHING revolves around cancer, and counts, and hospital stays, unexpected fevers, uncertainty...what is normal? I dare not complain though, I would fight for Kyle's life every minute of every day as long as that means one more day of his smiles, his touch, his hugs, and his "I love you's"! My life would NEVER be the same without him in it! Kyle is a true gift from God that I treasure each and every moment, through good times and bad! He is my hero, he inspires me, and he drives me...and for that, we will never give up!

With that... please continue to pray for Kyle and all of those battling cancer yesterday, today, and tomorrow!

One tired cancer mommy....

Denise

Wednesday, November 12, 2008 7:37 AM

Good morning,

I am running a bit behind but wanted to let you all know that Kyle is doing pretty well (still no voice though). He had a good day yesterday and I hope that continues on for today!

We are running into Children's this morning for a spinal tap and bone marrow aspiration. No chemotherapy as this is his "week off".

Jen is coming with me as mom has an appointment this morning, I am looking forward to that Egg Nog Latte Jen...YUM!

She made another plea for help above, check it out...I have got to get moving and numb Kyle's back up!

Cyndi, thanks for the guestbook entry...all suggestions and knowledge is welcome. Guess I better find a little tape recorder!

That's it for now, counts will come later this afternoon. We are praying for good counts so we can at least sneak out to a movie this week!!! Pray with us...

Denise

Monday, November 10, 2008

Hi Everyone...

Friday, I was able to set up an account in the name of A Cure for Kyle. The information is above for you to send any and all financial donations to help myself and the kids while we proceed to a very difficult next year. Checks can be mailed directly to the bank, written to A Cure for Kyle. The bank will then deposit the checks for me. The account is with Bank of the West, deposits can be made by visiting the bank as well. They were incredible in helping me set this account up.

The reality of all of this is just so surreal and crazy. I can't manage to grasp all of this, unsure if it's too much for one person to understand or digest. We were at the point in our lives that we were ready to enjoy our lives and move on from leukemia, we were just starting to feel like we could put most of it behind us. I often say that the reality is Kyle has battled leukemia since the young age of 3. The reality is that it's CANCER and cancer sucks. Cancer can reveal it's ugly head at any point in time once you have it and the reality is it came back into our lives, creeping in so quickly and so sneeky that it caught us off guard after 18 months off therapy. Why is it, that although I knew this was always a possiblity, that I cannot wrap my head around this and gear up with all of my might and strength just yet? Part of me is dying inside yet I know I have to gear back up for the fight of our lives...I feel drained and like every ounce of energy for this is depleted from me. He needs me and it's like we are all tired! How do we get that fight back...we need to, and quickly!!!???

That's my blab for today. We had a relaxing and quiet weekend. Friday, Kyle woke a bit discouraged so I ran to Target (thanks Colleen and Erica for the gift card) and picked up some things for a movie night. Kyle can't get down, I need to keep him energized. So instead of hiding in his room...mom organized a movie night and we had a good time.

Kyle continued all weekend long with sore throat and pain. It's frustrating as he continues to whisper...I miss his giggle!

Today is the last day of steroids. I hope this helps with his confidence. He doesn't like the bloated look, the full cheeks and tummy. This week off of chemotherapy should be helpful for him mentally and physically I think. This was our first time taking Prednisone and I must say I do like it more than the dexamethosone. I didn't notice nearly as many mood swings or breakdowns with him.

I have contacted a few of you about next week, five straight days of clinic and chemotherapy infusions. All day and draining, I recall this from his last relapse. Jen has organized meals for most of the week but I think she has a day or two open if anyone is interested. I have contacted several of you about helping out with Riley after school as well. I guess I better get back with you on which days will work for each of you. My dad will pick up Ty each so he is taken care of.

Speaking of Ty, his 16th birthday is Friday, November 14th. He doesn't have his license or permit yet, I think he is starting to get an interest. I hope he does because that would help me in many ways. I think he hesitated because he doesn't have anything to drive and it "cost money"...such a cheap teenager. I can't believe my baby boy is going to be 16!

The bone marrow drive is progressing along. I do have over 500 color copies here at the house if anybody wants to pick some up and help distribute them. Jen has been working pretty hard to get the word out there. I've emailed the local paper and local news channels but have not heard anything yet. I have faith they will help us! Speaking of, thank you Northern Hills Chrisitan Church for the prayers and assistance on getting the word about our drive out there!

Ed has talked to Children's Hospital a couple of times. It appears they have found some potential cord blood matches for Kyle which are being flown in to Denver for further testing. One particular "potential" match is being reserved for Kyle. Our first meeting with the bone marrow transplant team is December 4th so I have a bit of time to get things organized (including my brain). I have some helpful information from Nancy, if anybody else has advice, tips, or questions I need to ask at that time...send them on!!! Does anyone know what a "loci" is??? This particular sample is a 5 out 6 and missing the B loci I think???

Thank you Nikki and family for the AMC gift card, once Kyle's counts climb up...we will enjoy a day at the movies. There are some cute ones coming out that we want to see. Thank you Wendy King for the delicious cookies, they are very good! Thanks to the Mecham family for the great box of goodies. The kids have enjoyed all of the goodies you sent, and magazines are always great! Thanks Colleen (and family) and Erica (and family) for the Target gift card, that came at a great time to help lift Kyle's spirits and pick up a few groceries. And thanks Joni and kids, I missed you when you stopped by, but the hat is adorable. I hope he wears it this winter. The boy in the movie was wearing one just like it so hopefully Kyle will keep his soft sweet head warm with it. Thanks Westlake Middle for inviting Kyle to the school pep assembly today. His counts and confidence are terrible today so we had to pass but please keep us in mind in the future!

Please continue to keep us in your thoughts and prayers, I particulary need strength and Kyle needs continued healing!

Denise and Kyle

Thursday, November 6, 2008 8:43 AM CST

Good morning,

Yesterdays appointment went really well. They were slow moving at clinic for some reason, and Dr. Albano was out of town so we had Dr. Gerrington.

Blood was drawn and Nurse Sally gave Kyle his vincristine and changed the caps on his broviac for me. I asked her about the stitches on the broviac as he still had them. Dr. Gerrington checked with surgery and they said it was OK to remove them. Mom, Ed and I tried to convince him that removing stitches doesn't hurt but wow were we so wrong on this one. After already crying a bit from the two thigh muscle shots of Peg (chemo), he really cried when Dr. Gerrington removed the stitches.

Sally then put a new dressing on the broviac site after cleaning it up. They agreed it is healing really nicely.

We had to sit for an hour so they could ensure Kyle had no reaction to the Peg shots. I had some forms that needed to be signed (immunization release forms) and a few questions. It was determined that the chemotherapy given to Kyle upon relapse indeed burned his throat causing the pain and loss of voice. He should be healing soon yet continues to whisper when he talks. I miss his giggles and his voice, yet his witty personality still comes through...it's just a bit more quiet.

I also talked to Sally about his road map. I counted out and it appears his next admission landed right on his birthday (December 1). She said they would work around that one as we agreed nobody should go inpatient on their birthday...Kyle agreed as well!

He stops talking his prednisone (steroids) on Monday and has next week off from treatments. He does still go in next Wednesday for "sleepy room", a spinal tap and bone marrow aspiration. Mom is going to be busy that day however, Jen has agreed to come hold my hand.

Beginning November 17th (Monday), we are in clinic every day, all day, getting IV chemotherapy (VP-16, Cytoxan, and Methotrexate). I know Jen if working on meals that week for us as those are ALWAYS terribly long and mentally draining days (thanks Jen). I told Ry this morning that I would ship her out each day but she insisted she didn't want to be "mailed in a cardboard box"...silly girl!

Bone Marrow Drive is in need of some serious help. Thank you so very much Claire Gilmore and Jen for getting color copies donated. We will have about 1000 copies available on Friday to hand out to EVERYONE and EVERYWHERE. If you need some, let us know. It is so important that we get the word out and have the biggest turn out they have EVER seen. Jen's plea for help is above...!!! I am going to set up a bank account today if I can do it without crying...!

Thanks you Claire for helping with the drive, thank you Jen for wonderful breakfast for dinner last night...the waffles were AWESOME!

Please keep us in your prayers and volunteer to help us please...!

Hugs from a very cold Colorado....

Denise and Kyle

Wednesday, November 5, 2008 9:09 AM CST

Good morning...

Last night was difficult as I struggled all day long with my emotions and the reality of what is happening. I think I had a moment of breakdown, not the first really and certainly not the last. I did cry myself to sleep after tucking Kyle in, still not "getting it"!

With that, I woke up to an email from the Jeff Gordon Foundation...they are going to mail us an item to auction off at the bone marrow drive! Not only are we NASCAR fans here at the Lindgren house, we are also a Hendrick Driver Family so this is HUGE! I can't thank them enough for helping us out on such short notice. I am working on other organizations and am hoping they understand the lack of time available. We want this event to be HUGE!!!!

I know Jen and Bonfils have requested some help so any locals that want to help please email Jen (address above). I have emailed Channel 4 and our local paper (The Enterprise) in hopes for publicity for the event.

I asked the Colorado Rockies to send someone for PR as well. I've emailed the Avalanche too. I am great behind the scenes but ask me to deliver flyers and I cry uncontrollably (go figure).

There will also be several consultants (Creative Memories, Close to My Heart to name a couple) selling items with proceeds donated to the trust account for Kyle. Now here is something fun to think about:

I was going to open the trust account today but may hold off until tomorrow because I haven't some up with a cute and fitting name for it. I know Cyndi has "For the Love of Jackie" and I sure like that but can't do that...so please sign the guestbook with your suggestions for me. We often use "A Cure for Kyle" yet the money being raised is for medical expenses and day to day expenses during our journey to transplant not really A Cure. Let me read your suggestions...

We are off to Children's Hospital at 1:30 today for more chemotherapy and counts. Last night, Kyle told me he thinks he needs a transfusions. I looked at him and he was almost as white as the shirt he was wearing. His spirits are amazing, he always has been and always will be my hero!

More after our appointment, if there are transfusions...it could be a long afternoon!

I feel like I didn't ever give a shout out to you Melissa (BabyD's mom) for the great gift package and postcard. I keep meaning to call you but...well you know, I lose track of time and days!

Please keep us in your thoughts and prayers...more when we return!

Denise and Kyle

Tuesday, November 4, 2008 2:10 PM CST

I voted...and I hope you all did too yet I am thankful tomorrow is the day after elections.

Also today, I worked hard on the flyer for Kyle's drive and looked also worked on setting up an account for donations to help offset medical and living expenses during this difficult time. I don't know enough about 501c3 accounts just yet, so I will be setting up a trust account tomorrow. At least that is my hope...

this is so difficult emotionally and mentally. I printed off the Bone Marrow Drive flyer and took it to get printed. I had intentions of putting it up and getting the word out yet my first stop, I cried and just couldn't do it. The reality of all of this is slapping me in the face. I don't know if I was hoping it would all be a bad dream, or they would come up with something that would stop us from heading to transplant...today, as we advertise for the drive, I couldn't contain the rush of panic and emotions.

I spent most of today in random moments of tears and found myself apologizing for it. I cannot believe this is the road we are on, that this is the path we have been chosen to take.

As for Kyle...his hair is almost all the way out. Stubbles of dark, dead hair are accumulating on his shirts, pillowcase, chairs...he just leaves a path of it. He is handling it so much better than I am.

We didn't go for a walk today either. The weather is changing and it's getting cold. I worry about keeping him moving and have started looking into a mini-trampoline for his room. OK, so I read that is a great form of physical activity and helps the lymphatic system.

Tomorrow, Kyle has an appointment at 1:30. He will have his counts checked, Vincristine (chemo), and possible Peg shots in his thigh muscles.

I mapped out his "planned" journey a few weeks and it appears he will be going inpatient on his birthday, December 1st. That sure breaks my heart!

Thank you Natalie for the gift cards to our family, I filled up the gas tank and bought some books to help me research a bit. Thanks Jen and Susie for grooming our filthy dog Striker last night, he smells and looks so much better. Thank you Carrie and Christopher for dinner, we enjoyed the baked ziti and garlic bread tonight (and the cookies were yummy too)! Thanks Ginny Streeter and family for the special package as well, although we haven't had that contest of who could fit the most pieces in their mouth yet. Thank Cyndi and Jax for the Pay It Forward Bone Marrow Drive being held in NY on December 15th.

Thank you EVERYONE for your thoughts and prayers during this terribly difficult time. We pray for a HUGE turnout at the bone marrow drive and that a donor match will be found soon.

Still fighting the fight, just with some extra tears today!

Denise

NOVEMBER IS NATIONAL MARROW AWARENESS MONTH:

Every 15 minutes someone in the United States is diagnosed with a medical condition that requires treatment with a blood stem cell or bone marrow transplant - help save lives by registering to be a potential donor.

More than 35,000 people in the United States are diagnosed each year with leukemias, anemias, myelodysplastic disorders and many other life-threatening diseases that require treatment with stem cell transplants. Nearly 70 percent of these patients must rely on an unrelated donor to offer them this precious gift of life.

Finding a compatible donor is always a challenge, and certain tissue traits of the donor and the patient must match. There is a need for donors of all races, but the need for minority donors is urgent. Because tissue type is inherited like skin and eye color, patients are most likely to find a match from someone of a similar ethnic background. Because individuals with minority ethnic backgrounds comprise only 25 percent of the national registry, patients from minority ethnic backgrounds are less likely than Caucasians to find a matched donor.

Joining the national registry is a simple process and requires only a small saliva test, but becoming a volunteer donor is a serious commitment. Those who join the registry are asked to remain committed until their 61st birthday. They are asked to commit to donating to any patient, anywhere in the world, regardless of the patient's sex, age, race or ethnicity. This pledge can mean the difference between life and death for the patient.

Helping to give someone's parent, sibling or child a second chance at life is a rare gift. Often there is only one matched donor in the entire world. Too often there are none.

You can join the NMDP Registry as a potential marrow or peripheral (circulating) blood cell donor if you are between the ages of 18 and 60, in good general health and willing to be available if you are ever identified as a match for a patient in need.

You can join the registry at Kyle's Drive on November 24th at Westlake Middle School here in Broomfield, 3:30 to 7 pm. An added bonus, due to it being awareness month, bring in a canned good and it's FREE to register at the drive. You can also register online for FREE at www.marrow.org (quick link below), click JOIN.

Monday, November 3, 2008 9:17 AM CST

Sorry for the lack of updates, while we had a pretty quiet weekend it was only slightly eventful.

We did end up in the emergency room on Sunday morning. Kyle woke up in complete tears because his throat still hurts terribly. He was in quite a bit of pain. I wanted to get his counts checked as this reminded me of his Wednesday appointment last week.

I called the on call nurse who told us to go ahead and head in. Once we arrived they drew blood for counts and checked his throat. He has not really had a voice since his appointment last Wednesday, he whispers when he does talk.

Initial exam shows his throat looks "spectacular" as Dr. Ablano said last week and two ER doctors said yesterday. We cannot figure out why it hurts so bad. One theory was maybe (get ready for this) a virus! They feel it could be the end result of a virus and because he is immunocompromised that it's taking longer to heal. Hmmm! They also gave me a hand out on laryngitis. I'm stumped! He throat looks good (yes I stuck a tongue depressor down his throat with a flash light and saw nothing but healthy pink). Dr. Albano had done a strep test last week as well, just in case.

His counts came back and they were OK I suppose. He didn't need any transfusions anyway. Platelets were 25, hemoglobin 9.2, white count was .9. They sent us home two hours and one movie later with a medication that would numb his throat a bit (and a bit, I mean it numbs for maybe 5 mintues, I tried it)!

We are scheduled to head to Children's at 11 for counts but I am wondering if they even want us since we were in the ER yesterday. I will have to give them a call.

He just woke up and there as an actual sign of a voice this mornng but he is still in pain. OK and he just came down for a tissue, bloody nose! Grrr...

Information for the bone marrow drive is above, Jen is working very hard on organizing. Email her for more information or to even see is she needs some help planning it, I know she has some great ideas for the event.

I have to run....

Denise

Thursday, October 30, 2008 3:28 PM CDT

Kyle didn't wake up until 10:30 this morning. He gave me the thumbs up that he was feeling OK so far today. He has a little more color from his "refuel" of platelets and red blood yesterday. He was so angry that we had to stay until 6 pm. I do remember him getting "mean" when he would have transfusions and I often used to tease him that he must have gotten a mean persons blood. I won't say that about the platelets though, our good pal Susie (Jen's mom) donated the platelets for Kyle. Pretty neat!

While he was being transfused, Dr. Albano came in and out quite a bit. She did report that neither Mark or I are a match for Kyle. The report showed Kyle a 50 50 split between both parents. She reassured me that they are searching the registry and cord blood banks as we speak.

In the meantime, Jen had gotten the go ahead for a bone marrow drive on November 24th. Westlake Middle School has also given us the go ahead to use the school as our site. We are thinking maybe 3:30 to 6:30 but the time is not set in stone yet. We will have more information soon.

Jen did tell me that November is National Bone Marrow Awareness Month therefore it is FREE to join the registry at our drive. Typically it costs around $60 I think. It's a simple process of swabs to your cheeks to join. I believe we will also have access to kits to ship to you if you are not located here...or better yet, maybe you could set up a drive in Kyle's name in your area during the month of November?!?!?!

Dr. Albano also informed us that Kyle's bone marrow aspiration results were already in (they usually take a day)...and GREAT NEWS...less than 1 percent leukemia cells which means he is considered in remission. Anything less than 5 percent is considered remission. She was so excited to tell us, and we were thrilled with the great news! Getting Kyle into remission was the first step to transplant.

Many ask if he is still going to get chemotherapy since he is in remission, and yes...I was given his road map to transplant. We are looking at mid-January as long as a match is located. He will have two more "scheduled" inpatient stays according to his road map. He is due to be outpatient for 5 days straight on November 17th for two chemotherapy drugs (VP-16 aka etoposide and CPM aka Cytoxan). Three weeks later he is to be inpatient for high dose methotrexate (another chemotherapy), this stay is expectedt o be 3 to 4 days. I am truly hoping we are home for Thanksgiving, his birthday (December 1) and Christmas. That might be a reach but one can only hope right!?

Dr. Albano also wants Kyle to consume more calcium. His level was a whole point lower than normal. We are going to give him tums three times a day to see if we can help that number. It doesn't surprise me as we are low calcium consumers around here. Is this a possible excuse for him to eat ice cream???!!! Like every night with syrup, nuts and whipped cream...one could only hope!

We arrived home late to a delicious dinner compliments of Jen Jones (my angel in disguise). It was very yummy, thank you so much. And thanks for being my angel through all of this, your help is certainly not going unnoticed.

Thanks to Nancy and Matthew yesterday as we also came home to a surprise Halloween card with gift cards, Riley asked "why are Ty and I getting spoiled too?" I told them they are loved as well.

Today, Melissa...thank you for the box of important items. If anyone should know what I might need, it would be you. I loved the box of goodies and even had two peanut butter cups for breakfast.

Thank you to the wonderful group at University of Saint Francis for the box today as well. I think all things will come in handy during our journey. I loved the photos too, you all look like successful future nurses.

We were in bed by 9:30 last night and I have a feeling it will be another early night here. So much to digest that my head never stops swirling with "don't forget that" and "do this" and "what about this".

Anyhoo...I think that's it for today! Thank you all for your thoughts, love, prayers, well wishes, positive energy, gifts, cards and so much more!

Thanks for stopping in, my head is not all here right now so it's difficult to keep up on things. I am not ignoring any of you so please don't take it as you have done anything wrong. In time, I will come around. I read all of your emails, guestbook entries, texts and listen to each phone call, this I promise.

Denise

This is from Cyndi, Jax mom:

DKMS AMERICAS WILL MAIL KITS TO ANYONE IN THE UNITED STATES THAT REQUESTS ONE AND WILL REGISTER THEM ON BOTH THE DKMS REGISTRY AND NDMP. THEY DO NOT FORCE ANYONE TO PAY FOR A KIT IF MONEY IS AN ISSUE. TO JOIN THE REGISTRY IT IS A SIMPLE CHEEK SWAB - NO BLOOD IS TAKEN AT REGISTRATION.... PLEASE MAKE THE COMMITMENT TO SAVE A LIFE. DKMS AMERICAS WILL ALSO DO A BONE MARROW DRIVE ANYWHERE IN THE UNITED STATES. I URGE ANYONE READING THIS TO CONTACT DKMS AND EITHER REQUEST A KIT OR REGISTER TO DO A DRIVE...
You can also view a list of drives already in your community on their website.
http://www.dkmsamericas.org/

By email: info@dkmsamericas.org

By Phone: 1.866.340.DKMS (3567)

By Fax: 212.209.6710

Wednesday, October 29, 2008 8:42 AM CDT

Evening update:

We are home and boy was it a long day. I am on a bit of information overload but for tonight, the procedures all went well (spinal tap, bone marrow aspiration, two leg shots, and chemo). His blood counts were less than desirable, I think his platelets were at 17. We had to "refuel" Kyle with both blood and platelets.

I will post his counts tomorrow as well his protocol he is now on. Results from the HLA typing came back, neither Mark or I are a match (Kyle is exactly 50-50 of both parents). The search is on for a bone marrow match.

Jen set up a preliminary drive date, Novemeber 24th. We are still working on location and all other details. Thanks Jen for getting us a date!

With that, we are off to an early night of bed...phew! More tomorrow!

Denise and a "refueled" Kyle

Good morning,

Today is a clinic day where Kyle will have a bone marrow aspiration, spinal tap, chemotherapy (Vincristine and Peg shots into his thighs), and an exam. Hopefully we can get to the bottom of these sore throats Kyle is having. He was in tears last night because the pain was sharp.

I found myself getting mad...frustrated. I am so sick of this journey and the pain Kyle is experiencing all over again. I spent most of the day in tears and then was just angry last night. I was filling his humidifier thinking back to the times where I swore if this was the path we were given, I wouldn't be able to do it and NOW, here we are. I am tired...

This morning, Kyle cannot eat due to propofol (aka sleepy room - they put him under to do the spinal and bone marrow aspiration). I pray he doesn't get a spinal headache. I need to remember hot pads for his back afterwards, maybe mom will remember. He is usually sore for a few days after. And most importantly, I pray Doctor Albano is right and we can say he is in remission...pray with me!!!

No word yet on the stool sample from Friday, how silly is that. I know I should have called on it yet his issues have seemed to clear themselves up a bit. Just in time for more chemo to cause potty issues.

Also, no word on the HLA typing Mark and I had to undergo. I pray those results come back soon. I feel like a slouch because I back tracked on Matthew's site and they had already done their drive by now...with over 200 people testing. I browsed last night a bit on how to set up a drive and Nancy had some great ideas for the drive as well. Jen and I are going to start working on that soon.

OH SILLY ME...the new "A Cure for Kyle" bracelets have arrived. We have the original desert camo ones that Kyle designed with his last relapse and we just added the pink camo for girls. Let me know if you'd like to order one, two or ten from us. They are part of a fundraiser to help us offset these expenses we have endured and will continue to endure.

And a HUGE THANK YOU to our friend in Georgia, Mary Ellen Mantz for sending the amazingly cute Halloween popcorn tin filled with Kyle's two favorite types of popcorn. He took the whole tin to his room so that he can eat it all. I'll chalk that up to his steroids. Which reminds me, he isn't supposed to eat today until after his procedures so I need to go peek in on him and send a gentle reminder.

Please pray for us today, my emotions are now starting to flow...

Denise and Kyle

Monday, October 27, 2008 10:05 PM CDT

This morning, I had taken Ty to school and Riley went off with her best buddy Gianna. I returned home and was talking to Stephanie for a bit when Kyle came downstairs wearing a cute black Nike shirt. It didn't take me long to notice that his long blonde stands of hair were slowly falling from his little head and landing gently on his shirt. The blonde hair against his black shirt showed me that these were not the first few strands to fall out. And then it started...

tears poured down my face as I warned Kyle I would cry, I was sad. Not only was this a physical sign that the cancer had indeed returned but all of the things we celebrated when he was finished the last time have now ceased to exist. My precious baby boy was losing his beautiful hair once again, indeed the cancer had returned for a third time.

Now begins the stares, the wonders, the questions, the obvious...my son is battling cancer! A battle he started back in February of 2000, a battle for the life of me that I cannot figure out "why"!?

I cried, the tears couldn't stop. I called my hair girl, Heather and she promised to come by at 12:30 to shave his head.

She arrived and I thought I would be brave enough to take pictures to scrapbook, a part of our journey, yet I couldn't help but cry. Heather cried as she tried to comb his hair prior to shaving it off, Kyle fought back the tears...we sat and watched and oh how the tears just fell.

Heather swept up the HUGE mound of Kyle hair and I asked her to immediately to run it to the trash as pick up was to be anytime. She did and I thanked her. I must admit, Kyle looks just as cute with a two inch hair cut as he has with his long, thick, blonde hair.

As I was picking up Riley, I realized I should have saved a lock of his hair. A piece that showed his dark hair with a bit of his blonde highlights he accumulated when his hair grew back a short two years ago. I started to panic that the garbage men might have already come to take my trash and Kyle's beautiful hair.

I made it just in time. I arrived home and rushed to the trash can. My neighbor was coming over to talk with me and I had to have her excuse me as I tore open the trash bag and found Kyle's hair. I pulled out a handful and began to stroke it as she talked to me. Luckily, her eyes were filled with tears so I realized she would not think I was too crazy.

I put his hair in an envelope, I put his name and date on the front in big blue letters. I know I would have regretted throwing it all away. I still wish I were able to have taken those photos but it was a moment, a very difficult moment between us.

Thank you Jen and Carrie for getting Kyle a brand new Broncos hat. They rushed to our aide and brought us a hat that Dick's Sporting Good's donated to us, a Broncos sideline hat the players wear when they do not have their helmets on (I will share a photo tomorrow).

Kyle is still so terribly cute...with or without his hair! I had a difficult day with many tears, I'm sure it won't be the last day and it certainly wasn't the first!

I just don't understand...I don't get it! My heart is broken, so very broken!

Denise

Sunday, October 26, 2008

Just finished updating Kyle's site, new photos in album. These are from his surgery to place the broviac.

Kyle is battling a sore throat right now. Thank goodness we are still fever free around here but the throat has me a bit worried. I guess with an ANC of 17, anything can pop up.

Our plan is to stay home today and relax again. I have some things to catch up on, including phone calls.

His broviac ticked me off yesterday as I was doing my flush for the day. There was a "bubble" in the cap of it and Kyle decided we better change it. This is the first time I had to change a cap and needless to say I was a bit clueless and had to improvise. Kyle was mad that I kept having to flush him and I was worried I was doing it all wrong.

Kyle later apologized for being "mean" to me and gave me a big hug. I told him it was OK, that sometimes I can be "mean" too but that doesn't mean we don't love eachother. He shook his head in agreement. Awww the moments.

That's it for now...hopefully it stays quiet and relaxing around here!

Much love... Denise

Saturday, October 25, 2008

Yesterday morning (Friday), was a clinic day for us. They thought Kyle might need platelets or blood. Kyle was right on when he said he didn't think so. We arrived to clinic, drew blood and waited. I made mention of his terrible tummy issues and the fact that he had to potty (yup, just what you are thinking) 5 times the day before and once already that morning.

His blood counts came back and they were all pretty much the same as on Wednesday. Therefore, they didn't feel the need to transfuse him but put us on strick fever watch. His ANC declined from 49 to 17, YIKES! They then came in and felt he looked pale and maybe even a bit "yellow" in color. His billirubin was a tad bit high on Wednesday so they decided to run another blood sample to make sure he his organs were all functioning normal.

We waited and waited when results finally came in that everything looked good. It was then decided that we would take a stool sample. Since Kyle couldn't "potty" on the spot (and who can blame him), I was given the equipment and instructions on how to obtain a sample at home. Luckily, there is a small Children's Hospital branch here in Broomfield so I was able to run it over later that afternoon. I have not heard anything yet on the results.

Kyle has been doing OK...these tummy issues have really been taking a toll on him. Especially since he is on prednisone and is eating more food. I feel terribly for him.

He and I did take a walk this afternoon. He really is set on taking a walk every day and I think we've only missed once. It was a great day, the sun was shining and the air felt so crisp and clean (although I am sure it wasn't)! I became a bit frustrated and sad as we walked by the numerous soccer games going on. I felt a bit resentful maybe, kind of almost jealous that those families had cancer free lives and we have been in this "shell" this cancer world since 2000. I feel like we've been robbed of so much. I know I am tired and doing this alone is sometimes difficult mentally. I think I need to learn to squeeze in some "me" time.

The walk turned out nice anyway. We stopped by my mom's house so Kyle could order up a quesadilla from her. We sat and talked while he ate the entire thing. We headed back home and he is now resting on the couch. I think tonight is pasta, a movie, and bed. We all stayed up wayyyy too late playing Rock Band...

Stephanie is still in town so we've been having a great time with her here.

A special thank you to Debra McKinney for the surprise package when we arrived home on Friday. That was very sweet and we truly loved all the goodies. Thank you to Kyle's teacher, Jayme, for the movie passes. We plan on taking advantage of those when his counts rise.

Thank you everyone for the thoughts, prayers, emails, texts, phone calls, and positive energy. I cannot go this road alone...

time to get Kyle a Zofran, his tummy hurts!

Hope you all are having a relaxing and fun filled weekend!

Denise and Kyle

Wednesday, October 22, 2008 3:13 PM CDT

ZERO BLAST CELLS in his bloodwork today...! We are very pleased to get that news, next week will be his spinal and bone marrow aspiration as well.

Today, Kyle had his counts checked (listed above) and as expected they've dropped. His ANC is 49! No infection fighters in this kid. His nurse reminded us no sick or even slightly ill visitors...we are sticking to home!

He is scheduled to go in Friday to check his counts again and will probably need a platelet transfusion and a red blood transfusion. He received Vincristine (chemo) in his broviac and two more Peg (thigh muscle shots of chemo) shots today as well. His belly aches seem to be resolving a bit yet with low platelets, I am expecting the nose bleeds to begin.

We are very excited that his blast count is 0. I can breathe a tad bit easier. I was also told that the HLA typing (blood work for the bone marrow transplant) will probably take a few more weeks...needless to say, no result to share today!

We arrived home to a super cool and way cute candy bouquet, thank you so much Kim...Kyle lit up when he opened the box. Candy is great because he needs to suck on candy while I flush his broviac each day, he can taste the flush and it makes his tummy sick.

New "A Cure for Kyle" bracelets have been ordered and should arrive next week. We did add pink camo to the mix this time. Thank you Jen for organizing that for us and Jayme for helping sell them at Westlake Middle School.

Thanks mom for all that you do...! Stephanie arrived from Florida last night, it's great seeing her and we look forward to a week with her here at the house!

More soon...I have to go pick up a medication for Kyle.

Thanks keeping us so close in your thoughts and prayers...

Denise and Kyle

Saturday, October 18, 2008 4:35 PM CDT

We did make it home on Thursday evening. Kyle immediately went to his room and took a nap. Jen was here as she was helping unpack and organize my house all week. It looked great, her and her mom did a great job...and they made plenty of room for me to park in the garage.

Friday, we took it really easy. Kyle ate a little bit of burrito for lunch and then ate an entire steak and mashed taters for dinner. I also had the home nurse care come to the house and show myself and my mom how to flush the broviac each and every day. I forget when I type that some of you do not know what a broviac is so here goes a quick lesson. The last two times Kyle had his leukemia, we had a mediport put into the left side of his chest. Many of you saw it, it was located under the skin but was used for treatments via a needle (butterfly as we called it). This line was inserted into the right side of his chest. Mostly due to the scaring and jumble of veins that have been created on his left side. This "tube" runs from his heart to the right side of his chest and comes out of his chest. He has a double line for treatments and both must be flushed each and every day. I was trained on how to clean it and flush it (with saline and a product called heparin). So far, we are doing good with it, and while I expected to lose it when I saw a tube coming out of Kyle's chest...I really did well with it. Kyle, on the other hand, threw up the first time he truly saw it. I can't say I don't blame him.

I didn't post his counts from Thursday, his blast count (cancer cells) dropped to 15. That is a good sign.

Today, we are resting a bit again. I am trying to make this house feel more like "home" and the boys are catching up on video games. Riley just went off on a play date.

It feels so good to be home...home sweet home! No appointment Monday as Dr. Albano was comfortable with with his platelets staying steady. We head back in Wednesday morning at 9:30 am for Vincristine (chemo) and two Peg shots (chemo shots into his thigh muscles). I think I am in a fog, still walking around in a daze and in shock. I have noticed we have really retreated to aloneness. Sort of huddling as a family and retreating from the world. Not sure if that's good or bad, but that's what we are doing.

Back to organizing and cleaning...it sure feels good to be home!

Denise and Kyle

Thursday, October 16, 2008 1:47 PM CDT

We are waiting for our discharge papers, medications are being filled at the pharmacy, I've been trained on the brovic and now we have to pack. Kyle just literally inhaled 4 slices of cheese pizza, he wants to go home.

Haven't talked to his oncologist yet nor have I seem his counts yet. I do know we are to turn Monday for a count check....

that's it for now, we want to go HOME!!!

Denise and Kyle

Wednesday, October 15, 2008 11:10 PM CDT

Good evening from 721...

Today was a good day. Kyle did battle with sick tummy and some soreness in his back still (bone marrow aspiration). He finally did eat some dinner and a bit of candy before going to sleep.

He received his Peg shots in both thighs today but did tremendous with them. No tears at all...I know I would not have done so well. He laid with ice packs on them for about an hour and was good to go.

His blast count went down to 31 and all of his counts are looking pretty good. We were told he will probably be sent home tomorrow (Thursday) and boy did Kyle light up. That would be great news as he is already bored here.

Tomorrow, I will learn how to care for his broviac. I had not idea that I had to take care of it every day. Again, I am wondering when it is that I receive my nursing license for all of this.

Thank you so much Westlake Middle School for all of the amazing, cards, candy, gift cards, fun "to do" things and the cookie bouquet. Kyle absolutely loved the turtles. He has only been with you all for just over a month and your tremendous love and support have been amazing. Thank you to everyone for the prayers, thoughts, visits, strength, love, and just everything you do for us. I could never walk this path alone...I need you all!

Please pray that Kyle gets to return to his home and his bed tomorrow. We had a pretty good day today and for that I am so thankful.

Please know that if I don't get back to each and every one of you...I am reading your notes, text messages, and listening to your calls, I'm just a bit busy!

Jen is in the process of ordering more "A Cure For Kyle" bracelets and we should have those available soon. We are ordering the same camo that Kyle picked out years ago, we are just also adding a pink camo as another option. They are too cute!

I have to get some sleep, or try to. We are right next to the nurses station and I must say, they are soooo loud! Mom finally went home tonight and Riley went home with Ed so she can return to school tomorrow. Ty went with Jen to go home, sore arm and all (he just got his flu shot that he thought he might escape)! Don't worry, I made sure to give him a LOVE tap on his shoulder before he left!

NOW...I am going to attempt to sleep!

Nighty night from Children's...

Denise and a softly snoring Kyle

Tuesday, October 14, 2008 9:16 PM CDT

I am sorry it has taken so long to update today.

So my cell service was cut off for non-payment. I had a telephone fight with AT and T, which left me in tears and my pal Jen hanging up on them as she was mad. I have the direct room number listed below and I attempted to make some sort of payment to AT and T to at least restore my service for now. Sorry about that everyone.

Last night, after I posted, the night turned not so fun. Kyle's heart rate was all over the place and fluctuating. The more I stared at the monitor the more I wanted to throw up. It would go from 120 to 48 and all over the place. They kept telling me it was his heart and maybe the broviac. I got the uncontrollable shakes and had to leave my mom to stare at the monitor for me. The second is snoring stopped, I would wake up to make sure he was breathing. So the snoring was cute and good as at least I knew he was breathing. Mom and I slept terribly, Kyle and Riley slept very well.

Kyle started his chemotherapy this afternoon. Dr. Albano came through on rounds and gave me his road map. We should be leaving Friday as long as fevers don't start. He will get those terrible Peg shots this month and before we leave. His hospital days will be Wedneday's again with Vincristine, spinals and another bone marrow aspiration in two weeks. He is not taking Decadron/Dex (steroids) this go round, he was switched over to Prednisone (a different steroid). He will take that every day for a month. She is hopeful he will be in remission in two weeks...hmmm!

Mark and I both had our blood typing tests done today. The results on matching should be back in four days. Kyle was also tested this morning.

I ran into the transplant doctor I "heard" will become ours, I informed him that I have all of my researchers checking him out, background check and all! He thought that was funny. Wait til I tell him my dad is a malpractice attorney (wink wink), not true but thought I might keep him on his toes anyway.

Kyle was feeling better when I returned from my HLA testing. He was up playing Xbox but did battle soreness and a few more bouts of vomiting. Currently, he is on Atavan again and snoring up a storm. Our cute nurse, Christine, just came in with his IV Zofran and some more oral meds for him. Good luck waking him up for that.

Thanks Jen for all of your amazing help today and being by our sides the entire day. Thanks Mark for stopping in after your testing and Ed for dinner and the bottle of wine. Thank you everyone for your guestbook entries, kind words, and emails. Sorry my phone died around noon but hopefully it will be fixed this evening. I haven't cried in days and the stupid customer service gal had me in tears..! Guess we never know what might trigger me to "lose it"!

I think that's it for about now. Riley is sleeping with mom and I once again tonight. Hopefully we will all get some sleep. I pray for a better day for Kyle tomorrow...this journey sucks!

Hugs from 721...

The gamg

Monday, October 13, 2008 10:54 PM CDT

We are safely in room 721 at Children's. Surgery went very well and his broviac is functioning. He did end up with another spinal headache so we have been battling with that a bit. He is having major headaches and has thrown up twice. Currently, he is snoring away with Atavan.

He is having some oxygen issues so they have the mask next to his nose and he has developed a bit of a heart irregularity. They so far have told me that it's probably because the broviac tip is hitting his heart. I have been told not to worry as the heart is just wondering what it is. Hmpf! I am concerned about this "ding-ding-ding" everytime his oxygen dips below 89. The more he snores, the more it dips.

The best news of the day is there is NO CNS (Central Nervous System) involvement with his relapse. They did give him a dose of chemotherapy in his spinal cord while he was sedated.

He did not need platelets prior to surgery as they were at 80.

I know I am typing scattered, I apologize as we are all a bit sleepy. Riley ended up sleeping here tonight so it should be cozy with my mom, Riley and I crammed on this little double sized bed.

Thank you Jen, Susie, my brother Brandon, sister in law Colleen and their kids for staying with us while we waited for the surgery to be done. Ed just left as did Tyler.

OK, I can't think. I just want you all to know everything went well today and we will continue to kick cancers butt!

Signing off from 721...

Denise and a snoring ever so loudly Kyle

Monday, October 13, 2008 7:51 AM

OH MY GOSH JEN, SUSIE AND GIL....THANK YOU! WE JUST GOT A PACKAGE FROM UPS WITH THESE SPECIAL T-SHIRTS, WE ARE BOTH WEARING THEM TO THE HOSPITAL TODAY AND I IMMEDIATELY PUT THE BUMPER STICKER ON MY TRUCK....MUCH MORE APPROPRIATE FOR OTHERS TO VIEW THAN MY ORIGINAL "FUC* CANCER!"

I ALREADY SEE A FUNDRAISER IN THE MAKING WITH THESE GUYS, I THINK JEN JUST GOT A NEW JOB!!!!

LEAVING IN 45 MINUTES......

Eating time has ended. Kyle and I both admitted to being terribly nervous this morning. He ate a half of a bagel and a bit of juice before his cut off.

We have to pack yet and run a few errands before we head to Children's. I can't believe this is happening, I want to throw up!

Let the fight begin (again)! Time to kick cancers butt!

Sunday, October 12, 2008 2:02 PM CDT

Today, after Kyle is done being a Rock Star with Rock Band, we will be heading over to my parents house to watch the Bronco game. Then it's time to relax and focus on packing up for this journey to transplant.

Calendar for tomorrow:

No food for Kyle after 7:45 am, so we will wake up at 7 am and stuff him full!

12:30 - arrive to Children's Hospital clinic to get a blood draw. Dr. Albano wants to check his platlete level prior to surgery, it was at 100 a few days ago.

1:15 - check in for pre-surgery

1:30 - scheduled Echo to ensure his heart is OK to proceed with chemotherapy

3:15 - surgery to insert the broviac

after surgery - arrive to the inpatient unit and settle in. Fluids begin to hydrate Kyle prior to chemotherapy beginning on Tuesday.

I'm sure I will have numerous meetings, discussions, and information sent my way. I was told Dr. Giller will be our new bone marrow transplant doctor, with Dr. Albano keeping a close eye on us.

That's a lot to digest and wrap my head around!

Thank you for our visitors yesterday, the gifts, food, desserts, gift cards, and errands run for me are so greatly appreciated.

I became terribly infuriated and tearful trying to clean out a space for my 4Runner to fit in. I thought I had it squeezed in when I realized the stupid fridge in there is not allowing it to fit lengthwise. I will go back to the drawing board at a later date. I find I get very angry and then tearful right now.

I also think I am going to need a lifetime supply of Immodium or at least a years supply. I know I have to eat but nothing is staying in.

Kyle, he's enjoying himself...and he is certainly ready for the fight!

One day at a time...

Denise

PS - Not that I was snooping, I have been checking up on Matthew though (link below), and sweet Nanc is got some "Smiles for Kyle" in the works, I believe she needs some more volunteers for her secret project. I know MANY of you want to help us so give her a jingle if you'd like!

AnnMarie, thank you for setting up a fundraiser in Florida for our family.

Still need a local meal coordinator.

Saturday, October 11, 2008 9:30 AM CDT

Hmmmm....my brain is still in a fog, so hard to even describe unless you've walked a day in my shoes. Some of you have, and for those that haven't...I am glad you have not and hope you never do. This is just so crazy, so weird. I feel like I just walk around and say, "I don't know"...maybe it's a lost feeling, I feel lost and confused.

First of all, thank you all for your kind words, thoughts and prayers. I read each and every email and entry. I do my best to respond to each of you. It keeps me going. Thank you for those that have visited us so far, and those that are yet to visit this weekend. I mentioned I have a revolving door this weekend and I mean that (just email me for our address). Do not hesitate to visit us in the least. Kyle is feeling good still, has his witty sense of humor, and is addicted to the XBOX Rock Band. I have to take photos and post them. I am going to run out and buy dvd's for my camcorder as well. Thank you Ed for buying this for them, what an amazing distraction it has been for them.

Thank you Nancy (Matthews mom, link below) for EVERYTHING. Oh my gosh how I am going to lean on you as I know am following your footsteps on this journey of the unknown. She has given me so much information already and I appreciate her love, support, and help!

Some things I started thinking about were a meal coordinator. Someone local who could organize meals for our family. Nancy also suggested gas cards if anyone feels they want to donate and help us out. I am certain driving to the new Children's in this economy is going to add up. Target gift cards would be helpful too. This way if we need anything, I can have friends and family run errands for us without having to worry about them paying for things.

OK that's about all my brain can handle on that subject.

I did talk to Children's numerous times yesterday. Kyle will have an echo to make sure his heart his healthy prior to surgery on Monday and chemo Tuesday. They will also begin HLA typing on myself and Kyle's biological dad Tuesday.

I sent prayer requests to my two local churchs we attended. I pray for a speedy remission and a good solid match for Kyle. I have followed enough families to know that this road is not an easy one yet I also know, we can do this...we will do this. I need you, I need each and every one of you...I can't do this alone! I am scared, I'm angry, I'm hurt, frustrated, terrified, mad, confused, and lost! Kyle, he is just my hero and keeps me going every moment of every day! I am so proud to be his mommy!

Thanks for stopping in...I'll try to get some photos of my rock stars today!

Denise

Friday, October 10, 2008 11:22 AM CDT

Let's see, I woke up at 6 am and felt like my head was run over by a freight train. I took two tylenol and crawled back into bed (next to Kyle and Riley). I thought I was going to throw up. The feeling of nausea has not left me for nearly two days now.

We went to dinner last night (photos are posted) and I look at those photos and Kyle looks so darn good! I am frustrated beyond words. I can't seem to grasp my head around this at all. The feeling and emotions that strike me at any given moment is out of hand.

Yesterday, we went to Best Buy to get some DVD's. Kyle wanted the last two seasons of The Office. He, Ty and Riley played "ROCK BAND" in the middle of Best Buy. Riley was singing "The Eye of The Tiger" while mom and I just stood there and cried. First, they were all so damn cute and second, what an appropriate song.

Dinner went good last night, of course I cried knowing it will be awhile before we see that type of gathering again.

Today and this entire weekend, we will hang out at home and enjoy our time here. We brainstormed on what we would like to do and recalled things we always wanted to do when we were inpatient before...it always came down to just wanting to be home. So...with that we will be staying home.

Please feel free to visit us, we have an open door this weekend and welcome love, thoughts and prayers. Now would probably be a great time to see Kyle. I am working on laundry and just trying to be "normal"! If you need our address, shoot me an email and I will be happy to give it, just a reminder we moved last week.

Thanks for checking in with us. As Kyle told me first thing this morning, "No more crying, it's time to kick cancers butt...!" Amen Kyle!

Love you all....

Denise and family

Thursday, October 9, 2008 2:41 AM CDT

Here is what I currently know:
1. Cancer can kiss my ass
and
2. Surgery is scheduled for Monday at 3:45 at the Children's Hospital. During the surgery, Dr. Albano will do a bone marrow aspiration and lumbar puncture to see where we are really at with this BS!
3. We will then be admitted Monday after surgery to the inpatient unit where he will receive fluids until Tuesday.
4. Tuesday they will check to see if either parent is a match and chemotherapy will begin once again. I will then get a calendar for the month as to what they game plan is. Although we all know game plans can change!

I am going to update the best I can through this website. I have received a tremendous amount of phone calls today and I thank each of you. I am figuring out that the best way to keep you all informed is through this website...so please check it often!

We are heading out to dinner at Kyle's request, his favorite restaurant. He has also requested chicken wings this weekend. We did a quick run to get some DVD's for the hospital and some lounge pants...which reminds me I was going to freaking do laundry today!!!

I am at a loss and in total and complete shock at this point. Hopefully I can regroup a bit by Monday to kick some serious cancer butt!

Thank you so much for all of the love and support you have shown us so far, I know it's just the beginning!

For those that have asked what to do, join the bone marrow registry if you haven't done so yet. Pray your hearts out for us...and heck, if you get bored...I have a garage full of crap that still needs to be unpacked, you can come help me do that this weekend!!!

The tears are still rolling...but I love you all so very much and your outpouring of love for my son has touched me beyond words!

Today, he is still feeling good. Still bruising (nice one from yesterdays flu shot) and still pale. Platelets were at 100 yesterday, white count at 9, red count at 4, freaking blast count at 34 percent.

Now I am taking my handsome devil and his amazing brother and sister to dinner with my close family members.

Thanks again...we need you!

Denise

I am a total loss for words and as I type this, it makes it that much more true. I just woke up and had hoped it was all just a bad dream...

It is with a very heavy and broken heart that I tell you our sweet Kyle has relapsed yet again. We just received word last night that he has 34 percent blasts in his blood work.

Dr. Albano will call me tomorrow. Kyle will be scheduled for Friday or Monday surgery to insert a line for treatments. The plan in to get him in remission and then to transplant (once a donor is found).

More information soon as I attempt grasp this reality, crawl back into bed with my sweet boy and try to fall back to sleep with him near my side. I don't understand, I just don't understand!

Please pray for our family during this terribly difficult time!

Denise

Sunday, October 5, 2008 9:44 AM CDT

We are alive and well! Sorry, we have been in the process of moving and are between homes. The kids are loving the new place. Riley has a swing set in the back yard and just loves it. The amount on kids in this neighborhood is unbelievable. I think everytime I pull in, at least three children surround me to introduce themselves. I have a good feeling about our new home!

Kyle has an appointment Wednesday. I better call Monday to get the time. He seems to be doing well. I am concerned about the huge amount of bruises on his body, and in such odd places. Right now, he almost looks like a drug addict on his right arm. I keep telling myself he is just a normal little boy, right?!?!

OK, off to moving...my last day to move!

Hugs...and prayers please!

Denise

Sunday, September 21, 2008 7:09 PM CDT

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

Chili's Restaurant is doing the following:

In honor of Childhood cancer awareness month Chili�s will be offering a couple of ways you can contribute. You can go any day and donate any amount and they will give you a chili pepper coloring sheet that you or your kids can design and color. Also, on the 29th, they will be donating all the proceeds from that day to St. Jude�s. So enjoy a night out, eating great food while supporting a great cause.

Add your name to the bone marrow registry:

http://www.marrow.org/

Gold Campaign for Target

Please send letter to Target requesting a gold campaign begining September 2009. Greg Steinhafel only took over the position of CEO at Target in April so they probably have a lot of restructuring and what not going on so this is the perfect time for our letters to be received- let our children be a part of their change.

Target Corporation
Attention: Greg Steinhafel, President and CEO
1000 Nicollett Mall
Minneapolis MN 55403

SAMPLE LETTER

Dear Mr. Steinhafel,

Through Jackie�s mom, I learned about Target�s, Target houses at St. Jude�s hospital. As a Target customer I think it is commendable that Target cares about our children. Unfortunately, not all children with cancer are treated at St. Jude�s; therefore, only a small fraction of children with cancer will benefit from the Target houses. On the other hand, the thing that EVERY child with cancer could benefit from is a CURE. Therefore, I am hereby requesting for Target to make a donation to the Children�s Hospital of Philadelphia for further cancer research.

Target�s pink sale campaign and its dedication to breast cancer research is astounding. I understand in 2004 alone the one month proceeds for breast cancer that Target raised that year was $600,000. I can�t help but think of how many children�s lives could be spared if Target did the same for the oncology children of America. September is National Children�s Cancer Awareness Month, and the color that represents all childhood cancers is gold. It would be wonderful if next September we could see a gold campaign in your stores.

�The Cancer Center at Children�s Hospital is the lead Phase I institution of the Children�s Oncology Group, which enables them to fast-track novel therapies that require testing in children. Their commitment to advancing treatment begins with basic and translational research. CHOP�s leadership role within Children�s Oncology Group offers them cutting-edge treatment not available at other institutions by the pediatric oncology experts who translate basic science into these new treatments. Children�s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the U.S., ranking third in National Institutes of Health funding.� (Curesearch 2007). �The Cancer Center at The Children�s Hospital of Philadelphia treats more children with cancer than any other pediatric hospital in the U.S.�(Curesearch).

If Target launched a gold campaign with the proceeds going to CHOP�s cancer research then Target would not only be helping the 1300 families at St. Jude�s, it would be helping the approximate 12,400 children that are diagnosed yearly. Our children need a CURE; they need better treatments; they need to live. Through Target�s generosity and the cutting edge technology that CHOP offers lives can be saved. As a Target customer, I am hoping that Target will consider a gold campaign for their stores to benefit childhood cancer research.

I look forward to your response.

Sincerely,

Gold Ribbon on Products petition

http://www.thepetitionsite.com/1/gold-ribbon-support-for-childrens-cancer-on-consumer-products

Candlelighters writes the following:

The purpose of Childhood Cancer Awareness Month is to bring attention to childhood cancer and survivorship issues across the continent. Candlelighters asks its members and friends to contact local media outlets to bring these matters to the attention of the press. Although it has historically been hard to get articles about childhood cancer in newspapers and magazines, we think that personalized letters from parents in individual communities might help turn the tide.

Below is a letter template that you can personalize and send to local newspapers, and radio and television stations. We suggest that you send it to the health reporter for your media outlet. That person's email address is usually in the newspaper or on the paper's or station'swebsite. If not, a telephone call should give you the information.

A follow up call the next week will ensure that it arrived. If the reporter decides not to write a story, ask if he/she has any suggestions of getting this story covered.

Candlelighters would be glad to provide names of experts in the field if the reporter would like to speak to them for background information or quotes.

Thanks you or taking the time to help us elevate survivorship issues nationally.

Template
A Microsoft� Word document is available for modification by clicking here.

You may also copy and paste from below... Dear (reporter),

Treatment of childhood cancer is one of modern medicine's success stories. Thirty years ago, few children with cancer lived, but now almost 75% are cured of their disease. However, for the 250,000 survivors of childhood cancer living in the U.S., life can come at a high price. The surgery, radiation, and chemotherapy used to cure children sometimes affects growing bodies and developing minds.

Survivors of childhood cancer have an eleven times higher mortality rate than the general population, researchers in the U.S. and five Scandinavian countries recently discovered (July 1, 2001, Journal of Clinical Oncology). This study quantifies what families of survivors have known for years: problems can arise long after the cure.

Some examples of late effects after cure from childhood cancer are:

Breast cancer at an early age in female Hodgkin's survivors who received radiation to their chest when children or adolescents. Their risk is about 15 to 20 times that of their peers who have not had Hodgkin's disease.
Heart disease after treatment with chemotherapy (anthracyclines) or high-dose chest radiation.
Learning disabilities in survivors treated with radiation and/or chemotherapy to the brain.
Second cancers related to chemotherapy drugs or radiation used to cure the first cancer. Survivor�s risk is over 6 times that of their peers who have not had childhood cancer.
Symptoms of posttraumatic stress syndrome in survivors and their parents.
Infection with the hepatitis C virus in survivors who received transfusions prior to 1992.
My child (fill in personal info)

Most of the survivors of childhood cancer in this country do not get follow-up care from physicians familiar with the range of potential late effects. In fact, few oncologists specialize in the late effects after cancer, and there are simply not enough of them to care for the many thousands of children who survive every year. Therefore, survivors and their families are in desperate need of accurate information.

Would you consider writing a piece for publication in September--Childhood Cancer Awareness Month? An article on the price of survivorship, with resources for emotional and medical help, would be of tremendous value. This September, families from all over the country are staging events similar to Washington DC�s Childhood Cancer Awareness Days (http://www.childhoodcancerawareness.org/).

Please help give survivors of childhood cancer the information they need to live.

Suggested resources are:

(fill in name of closest comprehensive clinic for long-term survivors, obtain from www.acor.org/ped-onc/treatment/surclinics.html)
"Childhood Cancer Survivors: A Practical Guide to Your Future" by Keene, Hobbie, Ruccione
The online support group for survivors at the Association of Online Cancer Resources (www.acor.org/ped-onc/survivors/)
Thank you for your help.

Sincerely,

Your Name

LET'S RAISE AWARENESS TOGETHER...!!!

"Alone we can do so little; together we can do so much"
- Helen Keller

Monday, September 15, 2008 7:18 PM CDT

Kyle came home on Friday with a report he did in his backpack. He pulled it out to show me his grade and of course I proceeded to read it since it was titled, "My Life". I mean really, who wouldn't read about the life of an 11 year old, and one that has battled cancer for many years of that young life.

He writes:

My name is Kyle Lindgren. I am in 6th grade. My favorite class is band (me: awwww cute). I really wish we did not have to study science. I really like math, but I would really like to change social studies.

My best friend is Justin. I really like him because he is funny. My parents name is Denise. There are 4 people in my family. We also have 5 pets, which are 3 dogs and 2 cats. (me: forgot Peanut the guinea pig, oh well he's little)

After school I usually go home and play games. My favorite TV shows to watch is deadliest catch. I really enjoy listening to 1.75 on the radio. (me: no idea what that is?)

If I could go on vacation with my family, we would go to Florida and we would go to the beach.

My favorite type of food is pizza and my favorite restaurant to go to is out back. If I were to order a pizza, I would pick pepperonis as the toppings. I also like chocolate ice cream. (me: I don't think I realized he liked chocolate ice cream, he rarely eats it, maybe I should buy him some?)

When I grow up, I would like to be a doctor. (me: OH MY GOSH, his cancer has made him want to find a cure, OH MY GOSH...my heart warms and I smile). I think the best thing about this job would be the paycheck. (me: hmmmm, but OH MY GOSH, my baby wants to be a doctor)

If I won the lottery right now, the first thing I would buy would be a big house. My hero is superman because he is nice. If I could change anything in the world I would change the war because it has been going on for too long.

10 out 10

I immediately smile, "Kyle, I had no idea you wanted to be a doctor, that is so great!" He looks at me and says with those cute eyes as serious as can be, "Oh, I don't, I just wrote that because I was running out of time!"

Have a good night everyone...

Denise and kiddo's

Friday, September 12, 2008 8:57 AM CDT

I do not have a new site up and going yet. So much going on right now, the best news...the kids and I will be moving at the end of the month, we have a rental home! Wooo hooo! Thanks to all of you who have been house hunting for us and praying!

ML - Colleges in Colorado are great, Brett would love it here as there is so much more to offer along with the colleges. If you want to make a visit to Colorado to check it all out, just let me know...you are more than welcome to stay with us!

Kyle is going to play the clarinet, he gets his instrument today so I will try to post some photos! Way too cute!

Thanks for checking in and all the wonderful prayers for our family!

Denise and the gang!

Monday, September 8, 2008 10:32 PM CDT

I hope to have the new, secure website up soon. The reason for the change is because someone has been sending threatening emails to my good friend Stephanie regarding Kyle's website. The new format should help protect all of us from this kind of predator.

Thanks for all of your support for our family. Check back soon!

Denise

Monday, September 8, 2008 9:11 PM CDT

I am currently in the process of creating a newer, secure Caringbridge website for Kyle and our family. I will pass along the details to you when I have set it up completely.

Thanks for your patience...

Denise

Monday, September 8, 2008

Good morning...I hope everyone has a great week! The kiddo's are all in school and Baby Bella will be here at 11 am.

We had a quiet evening at home eating frito pie, snuggled up on the couch and watching our favorite show, "Extreme Home Makeover". There is no place I'd rather be than snuggled up on my comfy couch with my cute kids.

We made sure all homework was completed, kids were cleaned up, and all were tucked in as the weather is starting to turn cold and rainy (perfect for a good night sleep).

Thanks for stopping in and keeping us in your prayers!

Hugs...Denise

Sunday, September 7, 2008 2:51 PM CDT

I hope everyone had a chance to watch Stand Up to Cancer Friday night. The hour long fundraiser was amazing and touching to say the least...my heart was in total and complete awe. I had to download the song "Stand Up" off Itunes as soon as the show was over, the entire program was so heartfelt. I am grateful everyone came together in the fight against cancer...pancreatic, childhood, breast, lung, ovarian, etc. It's time we all came together and fought the fight together.

Kyle has been having an amazing weekend. He went to play with one of his best friends yesterday for a few hours. They play baseball on his friends trampoline.This worries me due to his brittle little bones and yet I know that I have to also let him be a boy and enjoy life.

I received several email updates on his grades, so far Kyle has all A's and one of the A's is 110 percent (Ty teased him for being an "overachiever"). I know he is proud of his grades and he should be. He has also been excited for tomorrow as he finds out in band what instrument he is going to get to play. I grin ear to ear when I hear the excitement in his voice and see it in his body language when he talks about it. I too cannot wait to see what instrument Kyle will learn to play this year. I can guarentee it's not a "brass instrument", he has issues with this particular group for some reason. The only thing he tells me is, "I am not playing a brass! I don't like them."

Kyle talks about gym class often and how challenging it is. He has to do sit ups, push ups, and run around the track a full lap. I know it physically exhausts him but he is driven to achieve. Interesting enough, I can already see muscle tone returning to his calf muscles.

I am thrilled to see Kyle recovering from his many years of treatments...it's been a long, difficult journey and yet these are the days that I have hoped for and dreamed of! I certainly cherish them...

Thanks for stopping in and checking in, life is good!

Denise and kiddo's

Saturday, September 6, 2008 4:13 PM CDT

Site being updated!

Friday, September 5, 2008 9:45 AM CDT

Classy entry in my guestbook Allison Walker. If "we" are so tired of hearing my poor Denise story then stay the heck of my son's website!!! This is now your second warning....

STAND UP TO CANCER...TONIGHT, 8PM EASTERN, 7PM CENTRAL, 6PM MOUNTAIN, AND YOU GET THE IDEA...!!! All three major networks will be airing it.

We've been busy, running in circles, and just in a whirlwind. First, I will state that so far Kyle is doing well. He is battling some headaches, paleness, and bruising but I am still going with the fact his counts were great our last visit.

I just found out a few weeks ago that my ex husband wants us out of the house ASAP. I finally made an agreement with my attorney that I will be the beginning of October. The kids and I have been packing but we have no destination as of yet. I've been searching for rentals for weeks. It's been interesting to say the least. Most do not want pets which makes it a bit harder. Then trying to find a certain price range, keep the kids in their same schools but make sure my commute isn't outrageous for them...blah, blah, blah! I'm trying not to be too angry about our little eviction from our home...after all, it is still on the market. I could go on but I am certain he checks this website so I will leave it all at that!

I have all of my financial aid lined up for school. I am beginning October 15th. I also informed baby Bellas mom that I will no longer be able to watch her come October. Yes, I cried. I have watched her since she was two weeks old. I know I will still see her but wow are we all attached to her.

We are still here...sorry for the lack of updates, we have lots of accomplish in the next few weeks!

Denise

How cute is it that Kyle is going to be in band??? He is figuring out what instrument he wants to play...too darn cute!

Thursday, August 28, 2008 5:17 PM CDT

I hope this update finds everyone doing good. Getting back into the swing of school is a bit difficult. I must admit that I miss the kids while they are away. I am thankful that my classes start in October. The plan would be to take the kids to school then myself...I get out and then I pick them up. Guess we can all have homework time together!

Kyle is finally back to himself today. He missed school yesterday with tummy aches. I was pretty worried but when he woke up today, he was more himself. Although, he did say he as tons of homework since he missed yesterday. The joys of Middle School.

With that, not much else going on here. I'm just relieved Kyle is feeling better.

Short update...today was busy and I am ready to rest!

Hugs,
Denise

Monday, August 25, 2008 8:49 PM CDT

Counts are in and listed above. They are all in the NORMAL range and I can breathe again. I still think he looks pale yet Dr. Albano did disagree with me, she said he was pale during treatment but not now. Hmmm....I will take great counts and run with it.

She also ordered a bone denisty scan for our next appointment. She wants to take a look at his bones and the osteoporosis. She said that it's normal to have bone loss during treatment but studies shows that childrens bones recover once treatment stops. She did say studies just weren't out there for relaspe and additional chemotherapy so she'd like to take a look and see how he is doing. In the meantime, I will continue Cal - Mag and Vitamin D for him.

Today was a good day, thank you for the thoughts and prayers. I wish I could begin to explain what it is like to live a day in the life of being a cancer mom. Or probably watching any loved one battle cancer for that matter.

Time to relax with the kids! For those curious about my new haircut...I did snap a quick photo and put it in the album. I am deciding if I should donate to Lock of Love or Pantene, I am leaning towards Pantene. I often tell people with long hair that they should donate it and for me, it was my honor to be able to do it myself!

Nighty night...from Denise and gang!

Sunday, August 24, 2008 8:19 PM CDT

My haircut in photo album...I've had several requests so here it is!!!

Off to the hospital soon...counts later! Prayers please!

I hope you all had a super weekend. Ours seemed to be pretty quiet. Friday was a day without watching baby Bella so after dropping the children off at school, I went to the gym and had a hair appointment. Some of you know that I was growing my hair out for the purpose to donate, and Friday was the official *cut the ponytail off my head* day. I am now sporting a short, stylish hairdo and while in the past I have always regretted chopping it off, this time if felt pretty darn good. My hair stylist was thrilled at the opportunity once the ponytail was actually gone, she struggled cutting it at first. I let her then choose the style and coloring since she's been wanting to do it for years. I will post a photo soon...

Saturday, I took all four kids (yes baby too) over to my parents to swim with their cousins. My mom is back in NY as another Aunt passed away on Thursday morning, she had battled with MS since I was a small little girl. I think my mom is mentally drained right now but will be returning to Colorado on Wednesday. I saw her briefly on Friday and she truly looks worn out and tired, two deaths in one week is very difficult.

Kyle has had me in a ball of nerves all weekend. He is battling a cold so I keep that in mind when I state that he is pale, slightly removed and emotional. I looked at him Saturday and his legs have bruises, I then grabbed his wrists and they were almost "black" looking. My heart sank, I slightly began to hypervenelate, and my eyes wanted to flood with tears....I literally froze. When Kyle was 2, just before being diagnosed, I remember looking at his wrists and they looked "black", his veins were filled with bad blood from the cancer. Oh everything flashed before me on Saturday. He looks anemic and I've been busying myself passing time. He has an appointment at Children's Monday at 4. As I was sick and my mind filled with fear yesterday, today I am at peace a bit. He has been sick all week...I just don't like the ghostly pale look. It's amazing the games my mind can play on me.

When we got to my parents, first thing my dad did was look at Kyle and asked if he was OK. I immmediatly got defensive and said, "I think so, why?" As if he was seeing what I was seeing. We all did agree he looks pale but also started pointing out what symptoms and signs he is NOT showing. The only thing I kept thinking was "we just started going to Children's every 6-8 weeks, how in the world will I ever go 3 months, let alone a year!?"

I slept almost twelve hours and still wanted to stay in bed past 9 am when Riley was yelling for me.

Needless to say, I am anxious to get to his appointment tomorrow. I want to take that big sigh of relief and remind myself to stop causing myself so much excess stress! The downside is mom won't be with us tomorrow, she always makes me feel better when she is by my side!!!

With that...I am going to get the kiddo's ready for bed as tomorrow is another busy school day.

Please send up some prayers for Kyle's appointment tomorrow...sometimes I think I am learning to breathe again and sometimes I find myself holding my breath!

Hugs...

Denise

Wednesday, August 20, 2008 9:48 AM CDT

Back to school...!

Ty, Riley and I woke up at 6:40 am to get ready for school. Of course the first week is easy because they are excited to get going, it's next week that I am going to be dragging them out of bed and running late!

First drop off, Ty at high school (7:25 am) and lucky for me his first teacher is the same teacher I had in high school. And because he liked me, it's probably a bit OK if Ty is late on occassion (phew).

Next drop off, Riley at 7:35 am. She just spots her best buddy and takes off running!

Home to make sure Kyle is moving (which he always is). Feed him breakfast, make sure his nerves are calm, and out the door by 8:10 for Middle School. I had to go in with him both yesterday and today to ensure he can get the locker open. Which seems to be a common problem amongst the kids. The thing I noticed today is, they all get the combo right but they don't push up and pull out the locker door so they think they did it wrong. I think this morning I helped three others with theirs before heading out.

I noticed it was 8:30 when I got back into my truck today, which is great for me because come October my school time is 9 am.

Today is also the ortho at 3:30 pm for Tyler. Kyle has Back to School night from 6-8 and Bella leaves at 8. Phew, are you guys tired? I am and it's only 9 am!

Now today is "short" day for Kyle and Riley so my pick up schedule is 1:15 pm Riley, 2:15 pm Kyle and 3 pm Ty. Yesterday I found myself wondering how single working parents accomplish this task??? Ty is open enrolled in a different high school so a bus is not an option for him, nor does he have his license. Riley can walk to and from but she isn't old enough to be home alone and she is the first one out each day. Kyle could bus it right now, but once we move we will be out of the area so he will need me to drive him as well.

I don't get it but I guess I have a little bit of time before that is another worry on my plate. Right now I am fortunate enough to be helping my children!

Baby Bella arrives in an hour so I have a few mommy things to accomplish this morning.

Kyle seems to be doing well. He is battling a cold and looks rather pale. My nerves are in a bit of a bundle as I await August 25th for his counts!

Please pray for Matthew (link below) as he is back inpatient while they try to figure a few digestive problems out with him.

Thanks again for stopping in...

Denise

Monday, August 18, 2008 6:42 PM CDT

Tomorrow is the big day...Kyle starts Middle School, oh my goodness! I can't believe he is in 6th grade. Oh the journey he has had since the young age of 3. I'm sure some tears will fill my eyes when I drop him off tomorrow. He only has a half day, the 6th graders get to learn the ropes before the 7th and 8th graders join the mix. He is nervous and I can sense that, I do my best to rassure him it's OK. It's OK to forget where your locker is or what classroom you are looking for. I tell him those things are normal in a new environment but that he will get it. I'm not certain my words of encouragement are working, but I won't stop trying.

Riley starts 3rd grade tomorrow and Ty starts 10th grade today. He has a teacher that I had when I was in high school...when I ran into Mr. Schmidt today he was amazed at how much Ty had grown. He said he didn't even recognize him until he answered attendance. Ty has grown so much, he's a good looking boy if I must say so. I'll be the first to tell you he had some moments but currently, he's looking very handsome.

With all kids back in school, I am going to prepare for my bought of schooling. I need to nail down some financial aid but am ready to get going. After all these years (haven't worked since full time since 1995), I am gearing up to become a working mom in the next year. I just wish this house would sell, ease some of the stress.

I'm off to check on a few other of my cancer families and then making some dinner for the kiddo's.

Thanks for checking in on us...

Denise

Thursday, August 14, 2008 11:55 AM CDT

AFTERNOON UPDATE:

THE CAST IF OFF AND BROKEN BONES ARE HEALED. MORE PHOTOS IN THE ALBUM...(he doesn't look happy or anything does he?)!

Good morning....

We've had a busy few days gearing up for school, last minute shopping, and making sure we have schedules down.

This morning Kyle had to be up at and at school by 8 am for orientation to his new school, Middle School! He did not sleep well at all, I know he was terribly nervous. He had some pretty dark circles and bags on his eyes as he head out. And just now I am realizing he didn't even eat before he left!!!

I dropped him off a bit early and the kids were standing outside the school doors. There were a few parents in line as well and I know he was so nervous. I immediately scanned for familiar faces for him but didn't see a one. I asked if he wanted me to stand in line with him but he said, "no". He slowly got out of the truck and jumped into line, I can tell he was a wreck. I wanted to park and stand in line anyway but Riley told me to go and said, "you would have just dropped me off!" LOL...! I think she was right!

I slowly pulled away, holding up others exiting, as I decided I needed to just go. I was scanning cars as I was leaving and did see one his elementary friends just arriving...phew!

We then picked up my mom who needed a ride to the airport. My Aunt Bette passed away from her cancer battle last night. Everyone is gathering in New York for the funeral.

Next up: picking up Kyle early to head to the doctors office. He is hopefully getting that smelly, stinky cast off today.

Busy day for us really. Ty returns home Saturday. I can't wait to hear how the trip to Missouri was.

Off to accomplish a few things before I pick up Kyle. Thanks Jen and Susie for the last minute dinner call last night. I truly needed it, you girls are amazing to me...
And thanks KimD for the "pick me up" call on Tuesday when I was feeling so low...!

Have a super day everyone!

Denise

Tuesday, August 12, 2008 1:02 PM CDT

Quiet Tuesday...

Kyle is off at a friends house for the day. He was pretty excited to go. He is all registered for Middle School. We spent time last night teaching him how to use a padlock. I hadn't realized that this is something he will have to learn since he is now a proud owner of a locker. I could sense his nervousness yesterday as we walked around the school, stood in lines, and he was handed his school ID. Kyle is growing up...!

Riley is off at her friends house today, Ty is in Missouri still, and I have the day off from baby Bella. I've actually had the last four days off and it's been nice. I love her to pieces but time without her can be peaceful and I can get errands run as well.

I registered for school, received my financial aid award letter, and met with the school again yesterday. I begin October 15th. Here is one thing I do not understand, the financial aid I was awarded was $1400 short of the tuition amount. I do not qualify for grants because I already have my Bachelors Degree so they gave me some sites for scholarships. I am having no luck with those either. Very frustrating!

I am not in the best of moods today and have been near tears several times. I think I should just go back to bed...like that will help!

I am working myself up about Kyle's health again. He looks pale with those dark circle and has confessed to a few bloody noses and bruises. One can really "mind screw" themselves when in this situation. I just want him to get to Dr. Albano to help calm my stress. I know she said we could come early but I haven't done it and won't. So...I can be a basket case until August 25th.

Tomorrow his cast is hopefully coming off. We can then start doing some light weights to help with this osteoporosis issue.

I haven't eaten much lately, my nerves are in knots but I am forcing myself to eat (just gagged down a sandwich)! I am in a slump, finding it hard to find the good in people these days therefore, I attempt to stay to myself for the most part. Maybe if I sit down and punch out my "to do's" and stand up to those that hurt me or let me down, I'd feel better. I typically take the high road and allow others to walk on me while suffering the consequences.

OK...I am venting terribly...! Prayers are needed for a friends Uncle who had surgery yesterday and I haven't heard anything from her yet. Also, my Aunt is losing her battle to cancer and isn't expected to survive the next week...cancer sucks (to put it nicely as this is a G to PG site right?)!

I'm off to work on some more scholarships and to deal with some unfinished business....pray for me!

Denise

Sunday, August 10, 2008 10:39 AM CDT

Are the Olympics terribly consuming to you as much as they are to me??? I'm obsessed and can't peel my eyes from the television. Men's basketball is on and I find myself being drawn to the television even though I have things to do.

Things to do - I was invited to the Rockies game this afternoon and cannot wait to go. I am glad that it is overcast today but I do not like the reports of heavy rain showers. Our church had tickets so my pal Sherrlyn bought two and is taking me...woo hoo!!!

Ty left for Missouri yesterday afternoon. My dad, my brothers, and Ty will have a male bonding time and it's just what he needs. My parents bought some land out there next to my brothers place. It had a very trashed mobile home on it so they are gutting it and rebuilding it. This will become our escape when we want to hide from the world. We are looking forward to it...

Kyle and Riley are going to enjoy their last week off before school resumes. Although I do believe they have some orientations and back to school events this week. Kyle will also get his cast removed on Thursday, well as long as he has healed that is. He is faithfully taking his Cal - Mag pills and Vitamin D. Once the cast is removed, he will do some light weights with me.

The three of us were plopped on the couch with popcorn as we watched the Olympics. Riley is intrigued by the gymnastics, Kyle and I were cheering on the swimmers. They were chanting "Michael Phelps...Michael Phelps"...with the occasional slip up of calling him "Phillips". They were cute...

Off to shower and clean up for the Rockies game, can you believe I won't be watching Jimmie Johnson race today?!? I did catch him yesterday in the Sprint race...he's too cute for words!

Enjoy your Sunday...as I plan on doing the same!

Thanks for stopping in....

Denise

Thursday, August 7, 2008 12:00 AM CDT

Let the craziness begin...

This morning Ty and I stood in line to get him registered for his sophomore year and it took us forever. He picked up his schedule which is a pretty tough one I might add. He was assigned his locker, paid for his yearbook and took a not so great photo...! Many of the girls were surprised that Ty chopped his hair and most didn't recognize him. I think a girlfriend could be just around the corner this year. I don't think I am saying that in a good way, but maybe it could be a good thing.

Kyle is still popping his calcium, magnesium, and multivitamins. We will find out next week if his arm has healed enough to have the cast removed. I am anxious to get in to Dr. Albano this month. I want to discuss this osteoporosis and also want to see his counts. Yes, Denise is having that bad gut feeling that I need reassurance that he is just fine. He is looking pale and has a mystery bruise on his forehead of all places. He doesn't remember crashing it on anything. I know...deep breath and all is well, he is an 11 year old boy...!

His orientation for middle school (can you believe it?) is next week. He also have the opportunity to ride the bus this year. He says he doesn't want to, which is OK cause I can drive him on my way to my school, but I think he will change his mind as the year progresses and he knows his friends are on the bus.

Riley is doing good. She's wearing out her new clothes already and is in for a shock when she sees that she will have to be up by at least 7 am this year.

Not too much else going on around here, I'm trying to keep my schedule straight as it's pretty busy. Ty leaves Saturday for Missouri for a week and he is so excited. I was invited to attend the Rockies game Sunday afternoon, and I am going!!! I can't wait!

With that, Baby Bella is about to demand my full attention...she just got here!

More soon...thanks for checking in with us!

Denise

Monday, August 4, 2008 1:11 PM CDT

Wow is school close...two weeks away. I have been busy getting the kids ready for their big days. It seems like the month of August is not really summer vacation. It's spent buying tons of things for the kids, orientations, registrations, shot updates, tours of new schools, shopping...whew I am exhausted.

The kids and I went last week and picked up school supplies and then while they were with their dad, I tackled the task of shopping for clothing. Ty has gained an easy 45 pounds in the last year with little to no new clothes. With his new haircut, he has a new attitude. He needed a totally new wardrobe but boy he looks awesome!

Kyle hasn't grown but needed a few new pairs of jeans and a lot of new shirts. His were all a few years old and so very stained and worn. He is pretty happy with what I got, although I am glad to report that the 10 slims were too slim...yeay, has he grown!? I have to exchanged the two pairs of jeans I bought for him.

Riley, well you can't go wrong with her. Anything new and she's happy. She too needed tons of new stuff as she has grown as well. She tried on all her new things and is pleased.

They still need new shoes and sweatshirts but all and all they look awesome. I'm happy for them!

Today is being spent cleaning the house and many jumbled thoughts running through my head...non-stop! Once they return to school I should have some Denise time to mentally prepare for my school to begin. I am waiting for the call from financial aid so that I can apply...I'm nervous. I'm ready to get on with it though!

Keeping my head afloat....

Denise

Thursday, July 31, 2008 9:15 AM CDT

UPDATE: new pictures in album as well, Ty's amazing transition....!!! I forgot a "before" picture of Kyle darn it!
Cast is on for another week and a half!

Amen Cyndi....this is from Jax site:

"July 29, 2008 (Bethesda, MD) � CureSearch National Childhood Cancer Foundation is pleased to announce that President George W. Bush has signed into law H.R. 1553, the Caroline Pryce Walker Conquer Childhood Cancer Act, at a ceremony in the Oval Office." This means 30 million a year for a period of 5 years will go to childhood cancer research, which is long overdue.

I wanted to point something else out though, this act was signed one day after Pres. George Bush agreed to give $73 million in food aid to Pakistan over 2 years (remember I was denied food aid). Not to mention the over $2 trillion we have spent on the Iraqi war.

I don't know about you but it seems priorities are messed up...shouldn't our government be giving to our children first vs. other countries? I am not saying turn our backs on the rest of the world but lets start fixing the problems at home first.

For those interested in hosting a lemonade stand where proceeds go to childhood cancer research please go to:

http://www.alexslemonade.org/

If you would like to donate to the Children's Oncology Group who helped pass the childhood cancer act

www.curesearch.org"

Today is haircuts for all kiddo's...woo hoo!!! I think Kyle might be going short, stay tuned for photos!

Denise

Sunday, July 27, 2008 7:44 PM CDT

Wow...I am so sorry for the lack of updates. Last week was a pretty rough one for me mentally. I'm trying to get back on track, the downside is I just don't feel I am ready to go off the anti-depressants. I have to find a way to maintain taking them...it's just not the right time to give them up. I hate admitting that...!

The children and I have been really enjoying our summer. This one is just whizzing right on by. We are now getting prepared for back to school. They all have a hair cut scheduled for Thursday afternoon. I'll make sure I take some pictures, they all have pretty long hair. Kyle's is amazing since it grew back after treatments. He has thick hair and these gorgeous natural highlights in it now. The front bangs are almost white they are so blonde and the rest is darker. I love it...!

We are also going to tackle school supplies, clothes and shoes pretty soon. We are compiling lists of what everyone needs. I too will head back to school but lucky for me, I don't need new clothes or shoes to do that..."want" would be a better word but I don't require anything new. And...I don't start until October. I will be filling out financial aid next month so please wish me luck.

I just feel fortunate to have had this summer with the kiddo's, they sure complete me!

Denise

Saturday, July 19, 2008 12:16 AM CDT

Another hot weekend in sunny Colorado! The temperatures are supposed to be high 90's and 100's and guess who cannot go swimming?!?! Ding - ding- ding...you are correct if you said "KYLE"! I acutally think he's trying to master playing a video game or two with his left hand.

The kids were supposed to be with Ed this weekend but since his mom and sister are in town, they opted to head to Steamboat Springs instead. Kyle and Riley didn't want to join them as they do not like that looonnggg drive! So, needless to say...I have my bundles of joy for the weekend, which I truly do not mind in the least bit. I was just glad I didn't make plans for myself.

We've been juicing again lately. Kyle and I walked up to the grocery store yesterday and bought tons of organic fuits and veggies. We love juicing the fruits but now we are pushing ourselves to step outside our comfort zone and add the veggies (besides the ever safe carrots)! I had a beet mixture yesterday for the first time ever and it was OK.

Riley just made herself some pineapple/orange juice this morning and I am going to have to find a good veggie drink. I think that had something similar to a V-8 in this book I have....wow, that's our excitement!

I've done a bit of looking into this osteoporosis that Kyle has. He is taking a Cal/Mag pill with a glass of OJ each morning and we are walking 30 minutes a day. My gym instructor is also a personal trainer and she is going to look into his ability to strength train at 11. I do know I wanted to get him a gym membership for his 12th birthday anyway. He has always wanted to work out with me. He is just so tiny...he stopped growing about two years ago, I'm just hoping now that he has been off therapy that he would catch up. Wonder if that osteoporosis has anything to do with it???!!!

Off to juice something delicious...at least I hope it's delicious! Hope you too have beautiful weather in store this weekend...enjoy it!

Denise

Thursday, July 17, 2008 2:08 PM CDT

HAPPY 8TH BIRTHDAY RILEY...!

Let's see, today started with Kyle's dermatology appointment. We took him to the dermatologist at Children's. She was surprised at the amount of moles that Kyle has, which explains why we were there in the first place. She took several photos of the front and backside of Kyle and then took a few close ups of some she wants to monitor. She viewed them closely and found them all to be normal, which was good news. We will return in six months to see if there is any change in patterns or sizes. She will also look into the "mapping" that we originally said we wanted. They do not do this at Children's so she will get back to me. We are now good until the beginning of the year.

Then we were off to get his cast put on. We thought for a few days about what color to choose and today he picked glow in the dark. I must say it's pretty cool.

I was rather shocked to learn that Kyle's regular physician blurted out that Kyle has osteoporosis. I knew the urgent care doctor was able to see "signs" of chemotherapy in his bone xrays but he certainly did not tell me nor confirm that he does have osteoporosis.

I asked our family doctor what I needed to do and he told me to immediately start giving him Calcium and Vitamin D supplements. I am now going to do a bit more research into this but luckily did have Cal-Mag and Vitamin D at home. I started him on both this afternoon.

I also read a little bit about exercise so we are going to do what was recommended...4 30 minute walks a week. I find this rather concerning actually. I fear further injury and breaking, as well as stunted bone growth.

Yes, ML, I read the dexamethosone was partially to blame along with Vincristine, Methotrexate, and several other more intense chemotherapy drugs he received over the last 7 years.

I am less than happy with the findings but I suppose not shocked. I surely did not expect him to walk away from all that he endured and think that he would live a normal, healthy life with no side effects. I guess I had hoped the side effects weren't so darn serious some times.

I'll put more pictures up soon, I did take a few of him getting his cast on....

more soon, just wanted to update quickly!

Denise

Monday, July 14, 2008 11:09 AM CDT

You have got to be kidding me????

Yesterday was Riley's 8th birthday party celebration at my parents house. Presents, swimming, bounce house, ice cream cupcakes...and another broken bone for Kyle (same wrist as the last time)!

I was laying by the pool when I heard my dad yell for me, sure enough...right around the corner they come, my dad holding Kyle's arm. I'm running over hoping for no cuts or blood and the way my dad yelled for me, I wasn't so sure!

Sure enough my dad insists he broke it and took complete charge of the situation. I have to admit, he did act like I was clueless and haven't taken care of Kyle for the past 11 years of his life. My dad iced him up and duct tape (men and duct tape I swear) this contraption around him (of course even Kyle's eyes were rolling a bit). I kept asking Kyle how he felt and if it felt like the last time he broke his wrist.

Kyle was quiet and really didn't complain of pain until a few hours later. I gave him some Advil and could tell as time passed that he needed a trip to the Children's Hospital Urgent Care.

They were rather speedy on taking care of us. Within a few short moments they had taken three xrays of his wrist, and can you believe I had my camera in my purse!?

The doctor (who looked like he was fresh out of college) came in to examine him. Kyle certainly had severe pain when the site was touched. This is the same wrist he broke two years ago (broke both bones in his wrist), yet it was a slightly different location. After looking at the xrays, the doctor said it was just a sprain and that they would put a splint on him.

The splint went from his fingers to just before his elbow. They told us to have it looked at again in a few days but to give him advil for pain in the meantime.

After getting ourselves tucked in for the night, I crawled into bed to catch up on emails. At 11:45 pm, my cell phone rang and I didn't recognize the number (therefore I didn't answer it either, "must be a wrong number"). "Funny, they left a message..." is what I thought to myself. It was the doctor from the hospital, they "misread" the xrays, his wrist is indeed broken and he needs a different splint put on, "please call us back".

"Right now?" I asked, "he is in a dead sleep!" Then came this, "well you could wait until tomorrow and take him to his regular doctors office. They may or may not do splints but if they do you need to ask for (didn't hear the name) splint. If they don't do that then you can take him to (didn't hear the name). You may or may not get in....blah blah blah...."

"Seriously...? (as I am thinking he really just wants me to wake up Kyle and bring him back in this very moment, after all, they offered to keep the clinic open for us to return. Is he trying to cover his mistake for misreading the xrays?)
"OK, I will just wake him up and bring him back in, that appears to be the easiest way to go!"

Off we went and they were very ready for us. They put a new splint on him...one from his wrist to his shoulder and sent him home with a sling! It is to be this way for 3-4 days and then we will return for a hard cast, they just have to wait and allow room for swelling!

We got home and tucked back in by 1 am, which was super fast. We were both so darn sleepy. I woke up this morning and looked in the mirror, I let out quite the giggle with my messy hair and sleepy eyes...I had my shirt on inside out, I must have been tired.

Kyle is now up, laying on the couch watching movies...for now, no computer games and no swimming. Guess it will be movie marathon at the Lindgren house.

I cannot believe he broke his wrist again. Now comes my little rant. As I was looking at the xrays, the doctor pointed out the areas in his bones that show a child who has had chemotherapy. Not good! I am back to my rant that he gets 7 years of chemotherapy (hard chemo) and the minute he goes off therapy they are "done"! Just like that...no follow up, no suggestions, no pointers of how to heal the body. I am now convinced that I should look at something to help strengthen his bones...especially after visibily seeing the damage on his xrays.

So today is filled with laundry, a plumber to fix my leaky kitchen sink, the gym, and some research for Kyle's brittle bones! Suggestions and input...please forward on to me.

There are more photos in the guestbook, even one of Ty...I'm not sure you all believed I had him since he hates being in photos!

That's it for now....

Denise and broken Kyle

Sunday, July 13, 2008 0:00 AM CDT

Wow...that time above is wrong, but it is late on Saturday night.

Today was my first day of a little baby break. I have the next 8 days off, what will I ever do? I can tell you one place you will find me, at the gym!

The kids and I have been having a good weekend so far. We had a very large tree branch snap off in our backyard. I believe Riley was climbing it yet she has not admited that just yet. Anyway, it was falling the majority of the way on to the golf course property. I thought they would give me a hard time as I was already planning my "gosh I am so sorry, I got divorced and really didn't have anyone around that could take care of it for me" and hoped that would work enough that they would just haul it away for me. However, much to my surprise, Ty pulled out a saw or two and cut it up for me. Very nice gesture on his part...and now my back patio is full of dead leaves, twigs, sticks, branches....and a hidden fort he built for Riley. Hmmm...! We then had the idea that we could just burn it all in the fire pit versus bagging it. Not smart, the fire was smelly, dark and...well a small example of California right now. Ty quickly took the hose to it as I was certain the fire department might arrive...

I scheduled Kyle's dermatology appointment finally. Had I known that I could have scheduled it for the Broomfield office, I may have done it sooner. It is scheduled for Thursday morning...Miss Riley's 8th Birthday!

That's the Lindgren excitement, my eyes are sleepy so I am off to bed. Hope you all are enjoying your weekend!

Hugs,

Denise

Wednesday, July 9, 2008 11:50 PM CDT

It's rather late but I thought I would send out an update, even though I really have little to say (imagine that, who would have thunk?)!

We recently switched services over to Comcast. We were struggling to get our wireless set up for the past day and a half, however, Ed came over and spent quite a bit of time with customer service online and finally we are up and running again. I was OK without service, Kyle was so-so but did spend some time on the Wii instead, and WOW did Ty have serious issues without access. Needless to say, I think the Lindgren crew is back on track with the wireless internet world.

I did realize I have to still touch base with Children's Dermatology to get Kyle in for *mapping* on August 25th. He is doing very well these days but gosh I don't feel like my stress level or anxiety has reduced much. I journaled last night and here is a portion of what I wrote, as Kyle and Riley were playing with a teddy bear that I bought at Childrens in 2000:

"It's just after 11 pm and Kyle and Riley are playing with Buster. Buster is a soft, light brown teddy bear with a fabric heart stitched over his heart. Oh the day I bought Buster at the Denver Children's Hospital, there it is right there...so clear, the memory is like I just picked him off the shelf at the gift shop on February 3, 2000. I can see my hand reaching for him as I knew he was the one I wanted Kyle to have. This is the day after Kyle's initial diagnosis of cancer. This was the day they took him out of my arms screaming for his mommy, tears streaming down both of our faces, I could hear him scream even after the big, white, electric doors closed...he wanted his mommy! I wanted to run in and grab him out of their hands and whisk him away. They were taking my 3 year old son to have a port inserted into his chest in attempt to cure him from his cancer.

I headed to the gift shop alone, devestated, lost, sad and so terribly confused. I didn't have to be alone, but I chose to be. I picked out Buster, he couldn't have been more perfect in my eyes. Fear filled my heart and soul, my son was just diagnosed with a life threatening illness, Leukemia (I didn't even know what it was, I just knew people died from it). These were the days that forever changed my life - our lives.

Sometimes as I recall those moments it's almost as I am right back there. Every detail, every moment is so painfully vivid today. I can recall exact moments, conversations, and the feelings just rush back into me. My eyes freeze and nothing else is in focus but my thoughts bring me right back to exact moments. I'm not even sure I am breathing while I recall these little episodes of pain.I often wonder if I will ever be capable of moving on from this. The fear and pain honestly sit with me more than I have ever expected them to. Do we ever move on from this? Do the memories and details ever become less vivid, less real? Or do we not only endure childhood cancer but now we are to struggle with mental anguish afterwards?

I don't choose to have these thoughts enter my mind - they just appear, even simply by the children playing with Buster set them into full swing. They almost appear to often remind me of what we survived. As reminders of what we endured so that I can appreciate all that I have today and while the material things are slowly going away, I still have 3 beautiful and amazing children."

Now don't you all race to have me in counseling...I am OK most of the time, it's those *mini memories* that pop in and out on occassion that trip me up, maybe set me back, maybe remind me of how far we've come, obstacles we've overcome. It's just bizarre to me how little things trigger an episode in my mind...such as Buster. I do think I get better as more time passes, it just amazes me that my mind can retain such details of traumatic events, conversations, situations...etc.

Anyhoo, it's terribly late for me. I am one sleepy little girl!

Hope you all have amazingly sweet dreams...

Denise

Sunday, July 6, 2008 6:48 PM CDT

4th of July was so much fun, I sure hope you all had a good time as well. I love the 4th because it's all about family, bbq's, great food, swimming, and fireworks. It's a day of relaxing and certainly giving thanks to those that serve so that I may continue to enjoy those freedoms!

Today was a busy day, I actually worked on my sprinkler system. Yes, you read that right. I changed my first sprinkler head and it was a piece of cake. I almost find it easier changing the entire canister rather than those little zone head thingy ma bops...! So I didn't say I had the sprinkler lingo down but I am very proud of myself. I also fertilized, pulled weeds and moved rock...

I am now attempting to clean the inside of the house for a showing tomorrow afternoon. That part drives me nuts, kids and dogs can certainly wreak havoc on my home in a short time. But a girl must do what a girls has gotta do.

I did find time to watch The Bucket List this afternoon. First and foremost, I hate cancer...! It was a good movie and sure makes a person think. I'm not sure if my cancer wounds are still too fresh for me. I hate cancer! I did find the two lifestyles of these men interesting, one with more money than he knows what to do with and no loved ones or family. And one with a supportive, loving family and he has worked his tail off day in and out. While the man with money was able to do so many fun things, at the end of the day...his life was lonely (until the end of course). The other soon found out that the money was nice but being with his family is what mattered most. I think "the bucket list" is an interesting concept of course...and I (like many) do not have one written down. I have some things I'd like to do in life but nothing in writing, nothing to cross off as I accomplish each one before my time is up.

I found the end to be a bit sad for me at this time in life. While I have my children and family, they bring me so much joy, I am still alone. While most days, I have learned to breathe again, learned to live again, and most days I am perfectly content being alone. That is something I found it hard to be for the majority of my life, alone.

This past year, I have had so much personal growth and learned that I would rather be alone than in a bad relationship...however, this movie did make me sad at being alone. I've dabbled in dating this past year but have learned I am simply not ready to date. I need some more personal growth, I need some deep wounds to heal. Regardless of what I have been told in the past, I have so much to offer someone in life...and in time, I have complete faith I will share it with someone special. So with that part of the movie, it did make me a bit sad...but not sad enough to rush out and fill the void for the wrong reasons.

The kids are doing really well still. Riley has her moments of boredom, maybe she should have been a twin! Kyle is doing great. He woke up with these itchy red spots on his tummy...I think I better pull his sheets and wash them.

Please, please continue to pray for Kyle Adams (his link is below). His entry just tears my heart out! I pray for him so often...take a moment to sign his guestbook with words of encouragement and strength if you have them!

I'm off to finish cleaning, another showing is scheduled for tomorrow.

Hope you all had a fantastic weekend...

Denise

Tuesday, July 1, 2008 11:08 AM CDT

July 1st...where is all the time going??? And why is it the 1st of every month gives me this feeling of a "fresh start"? Maybe because my budget starts over and WOW did I exceed my budget on groceries (as most of you are I am sure). I feel like our pantry and fridge are bare bones all the time and still I exceed the budget, by A LOT! I do realize that everything cost twice as much these days and I have quickly realized that the Safeway in our neighborhood is double what others charge. For instance, this past weekend my mom asked me to grab a bag of ice for the cooler by the pool. She says (knowing I am broke), it should only be like $2 for the big bag. I laugh that she our conversations now revolve around price and tell her that I will certainly do that.

I head to Safeway and buy my groceries and as I have been doing so much lately, totally forgot to add the bag of ice. I pay for my groceries and then say, "gosh I forgot a big bag of ice for my mom. Can you ring that up and I'll pay cash?" "Sure" he says, "That's $4.25." Now I am laughing about the whole money talk with my mom who told me it would be $2. The big joke when I got to mom's house was the fact it was over $4 for a bag of ice.

Needless to say, I have found that I can get plenty more groceries at Super Target than the other places. While I like Super WalMart, I find their food selection isn't as good as Super Target. Any other suggestions, I am open! I'm really trying hard on this budget thing.

Can you believe my gas budget was way lower than what is on there? I do walk quite a bit (was walking up to our expensive Safeway but no longer will do that)! I only spent $140 on gas all last month! I was impressed! I also exceeded on Medical but can't change that, there are bills to be paid. This budget stuff is my latest challenge and I kind of like it...

Anyhoo...Kyle is, well let me say it like this although men don't like to be tied to this word: EMOTIONAL. I was giving him melatonin and usually just buy whatever I seem to find. Well his last bottle had some anti-stress something in it, this bottle does not. Guess what??? I am going back to the old bottle. I didn't realize it until lately but he is moody right now. I feel bad for him, as I too battle those issues (like I'm telling you all anything new), and I know he has no control over it. I'm going back to what he was on before, mom said they carry it at Costco.

Ed bought Tyler a lawn mower. For two reasons really, I told Ed he wouldn't have to maintain paying our lawn service if he did this and two, it would be good for my boys to learn to mow the lawn before they are say 30 years old and their wives are cursing my name. We will start next week as the lawn service just mowed. I am trying to remember all the rules to mowing and safety, I haven't maintained that job since we moved into this house 8 years ago.

Oh July 1st also means that I am going to have to apply for financial aid for my schooling in the Fall. Yikes! I pray for some grants and lots of help. KimD and I figured since I am a single mom with 3 children, I should be OK. The financial aid lady also felt that I had no worries...but guess what, I am worried (wonder where Kyle gets that from)! Any pointers and tips on applying would be awesome as well!

Maybe I shouldn't take so long to post...I am rambling!

Please continue to pray for Matthew as he is now back home and transitioning into "normalcy" after transplant. Kyle Adams is needing mega prayers, I just received his update last night and it was posted by someone else (which always concerns me), and all others battling that nasty "C" word.

I will post again soon....

love to you and yours,

Denise

Thursday, June 26, 2008 8:54 AM CDT

Good morning on this lovely Thursday! I do not have baby today so my children and I are going to enjoy our day without having 11 pounds of cuteness tied to me. It's Ty's last day of summer school, he is excited. I truly think he enjoyed summer school. He talks non-stop all the way home about his day and I just love it, he is typically such a non-communicating teenager. He is having a competition with a girl in his class (bet he lieks her) to see who can get the highest percentage in the class....all for the mere amount of 1 penny. I thought that was cute!

Yesterday he told me, "I figured out the trick. If I acutally do my homework and get good test grades, it's easy to have good grades!" Hmmm, I refrained from saying, "yes, that is what I tried to tell you all along!" He is probably hard headed just like his mom and has to figure it out himself, sometimes the hard way. Regardless, I am very proud of him and hope this all continues on into the fall school year.

Kyle is doing really good as well. I never did get the call for his ANC. The counts above were just from the top half of his labs, the rest had not come in yet. I am also going to call Children's Dermatologist soon to set up an appointment for him on August 25th. I really need to make sure they monitor the vast amount of birthmarks on his body, especially his back.

So, I read up on Oprah's 21 day detox she just did. I read each of her previous blogs and thought that it sounded like a neat idea to try. I've always wanted to attempt a detox myself and read about a quick three day one in the Natural Health Magazine last night. I thought about doing it this weekend as they give you a really neat grocery list to get everything you need. I think it would be easier if someone did it with me as well but they would have to live with me for three days so we could lean on eachother and beat one another when we reached for the morning cup of coffee.

I then remembered that I was invited out this coming Saturday night to enjoy some muddled mango martini's. I don't think those are included in this detox dealie...hmmm!!! And I'm not even sure I can afford all the groceries that are required for the detox right now. I mean honestly, who stocks things like: quinoa, figs, star anise pods, coconut milk, miso paste, beets, sea veggies, mullein, slippery elm and so much more??? Heading to Vitamin Cottage or Wild Oats would cost me dearly.

I think about Oprah and her 21 day detox diet. I truly believe I could do it too if someone were cooking my meals 24-7 and bringing them to me, silver fork in hand. I mean honestly, who couldn't try the diet that way, you would have no excuse not to? That's the thing with celebrities, if someone cooked all of my meals for me personally...I'd have no excuse in the world not to look like a million bucks right?!

Anyhoo...I may or may not try this 3 day detox. Anyone want to come live here for three days????

For now, I am going to go enjoy my beautiful day with my kiddo's. I think it entails some sun and swimming! I hope you all have a wonderful day as well!

I am going to put Kyle Adams link below for you all to check in on him, he just updated his site last night! I wish I could be by his side...

Hugs,

Denise

Monday, June 23, 2008 9:17 PM CDT

Counts are in...well most of them anyway! They all look great (listed above). Funny how we can really go every three months for counts and I am still at every 6 weeks due to my mental state and nerves. Soooo, last night I laid in bed (unable to sleep) thinking to myself (because well after all, it's just me and the Man upstairs at this point) that I am almost ready to change the every six week appointments. I thought "well I could go three months, not really, but maybe I could do 8 weeks now!" So today, I told Dr. Albano that I am ready to go to 8 weeks! She finds this adorable that I am a basket case but agrees that is fine. She even wrote on the appointment slip, "8 weeks...give or take two weeks per mom!" LOL! I scheduled Kyle for August 25th. OK everyone, this is a HUGE step for me...really it is!

His oncologist also told me that today Nurse Sally asked her, "isn't Kyle at the point he can come every three months?" Dr. Albano replied, "Kyle is ready but someone else isn't!" She did also reassure me that I am not the ONLY mom who has struggled with this. All in due time will I be ready to take a bigger leap on this subject.

His physical went great, counts look good, eyeballs are good with no new growths, enjoying summer, getting ready for Middle School...wowee! My heart is happy!

Thanks for the input on my doggie Jasmine. After research and input I am going to talk to her vet about the FPO surgery (literally sawing off the "ball" that keeps popping out of her hip socket). Sounds pleasant huh?

Please continue to pray for Kyle Adams and better yet, sign his guestbook to let him know you are thinking of him (www.caringbridge.org/visit/kyleadams), he is sure struggling right now and my heart breaks for him all the time, such an incredible young man.

With that, I am going to relax a bit...thanks for checking in!

Hugs and love,

Denise

Sunday, June 22, 2008 10:39 AM CDT

Today is supposed to be another beautiful day here in Colorado. I am looking forward to it with great anticipation as it is a day of REST for us. We seem to truly cherish our Sundays together because we are all together as a family with no interruptions.

Today we will be heading to my parents house to relax, enjoy the sun, the pool, and the grill of course. I am making "Yummy Halibut" out of Matthews Never Give Up cookbook. It caught my eye the other day and I need to run out and pick up some halibut, I bought the other ingredients Friday night. Can't wait to give it a whirl as I am a huge fish lover...!

My brother, his wife, and their three kiddo's also head to my parents house on Sundays so the cousins can enjoy time together, family is important to me. Not to mention that my brother and Ty have this interesting dominance issue they need to resolve. Ty doesn't have an older brother and Brandon never had a younger brother...need I say more? They wrestle in the pool until they can no longer function, red marks and scratchs all over their chests and necks. I laugh because Ty outweighs Brandon now...I'll try to capture a photo of the wrestling tournament today! Ty was sore for two days after the last one!

Now Denise has an issue that needs to be resolved soon. I have put it off and feel terribly. I just don't know how to proceed and it's about my.....DOG. For those non animal lovers, you can probably stop reading here.

Remember last summer my awesome German Shepherd Jasmine was hit by a car? I had to charge over $5k to credit cards in an attempt to fix her. She dislocated her front left elbow, broke a tooth, had numerous cuts and abrasions and dislocated her back right hip. Jazz is an AMAZING dog. She is a rescue dog that we adopted at Christmas when she was 1 and a half years of age. She is totally and completely obedience trained and Kyle loves her beyond words, we all do. She is protective and loving, social, beautiful, trained, and now broken...

The vet did an experimental surgery on her back hip because they could not get it to stay in place. All of her other injuries healed amazingly. This surgery was the cheaper option for us but had great hope, it included drilling, bands and screws to keep her hip in place. She recovered quickly and you would have never known she went through such trauma. Even the vets office was amazed at her recovery and determination to get better. Jasmine would drag herself up the stairs each night just to sleep in her favorite spot, next to my bed (on the floor).

Well....problem now, my ex took her hiking (which he does so without a lease or any visual contact of her) while I was in Florida (yes back at the end of February). When I returned home she was in pain and limping on her back end. I took her to the vet and he said that her hip felt good and it was probably a sprain. Oh deep sigh of relief for MANY reasons. His orders were to rest her. Three days later, yup your jaws will drop, my ex took her hiking again and brought her home in a worse state (I know you can stop the jaw drops). He only exclaimed to me that "he probably worked her too hard!"

I finally told him he needed to take her in and figure this mess out, I feel he is responsible for undoing what was done successfully. He took her to a specialist in Loveland Colorado, and after viewing xrays...her hip has dislocated, the surgery is undone and the screw is three quarters of the way out of her hip bone. OUCH! She is in terrible pain.

I told my ex he needed to pay to fix her after all she was with him at the times of injury. He feels that this is the result of her initial accident last summer and it was a failed surgery, therefore he feels no responsiblity to this. Grrrr....!!! His solution, a phone call to Denise saying, "my buddy will pay for Jasmine's surgery if he can keep her!" WHAT THE (blank blank blank), our family dog that the kids love beyond words....how about NO!

Needless to say, he took her back to our regular vet who said she needed total hip replacement at $4k to $5k, or they could do a surgery where they just cut the "ball" off of her...which I don't quite understand that whole concept. Yes, Ed said it's only $1500 but seriously, what do they do after they cut the ball off? I knew at that moment that Ed would not help with this because she will never be a running/hiking dog again, just a cute house dog. If he has no benefits to reap from fixing her, then why would he? I'm actually half expecting him to get himself a new dog...

Today, I really need to tackle this problem. She is in pain and she is such a young, active and amazing dog. She is Kyle's baby (more so than the Golden he picked out himself upon relapse)! I honestly considered for a moment giving her up but cannot do it. Not a chance...

I have NO money what so ever, no credit cards to my name nor can I get any, and have very little facts on what is the best option for Jasmine (non dog lovers please refrain from suggestions here). I am online researching (google.com)options for this type of surgery yet am coming up empty. I am going to beg and plead with my vet to allow me to make payments to them, and attempt to have my ex at least split this bill with me. Kyle offered to let me borrow some of his money...awww is he sweet!

Yes Jen...I called CSU Vet School and had an appointment but their office visit was more than our regular vets, to me that was not a good sign. Also, the Loveland specialist said her initial surgery was one of the best they had seen, which give me huge confidence in our regular office.

Can anyone help me figure this out...??? And remember, I am a HUGE animal lover and there is no way I am giving her up or putting her down...not an option, the kids and I discussed and they were heartbroken at the thought that Ed wanted to give her away!

Thoughts, suggestions, input...???? I know others have such bigger fish to fry than my dog issue but I also know Kyle's site reaches many who might have some great ideas....thanks!

Denise

Kyle's appointment is tomorrow at 4 pm...I will keep you all posted on the results!

Wednesday, June 18, 2008 9:12 AM CDT

The kids and I have been having a very good week. The weather has been really good so we've enjoyed lots of swimming at my parents house. We even took Baby Bella for her very first swim yesterday...she loved it (until she put her entire face into the water and realized that was not so much fun!)

Ty is getting an A in summer school...yeay! I am actually very proud of him and he has had no complaints of not wanting to go. The ortho also has decided to stop doing work on his mouth for the summer. I guess he is growing too quickly and is messing up the work that is trying to be done. Not a good sign. I gathered something was up when he started asking Ty a bunch of "growth" questions. I did point out that he has gained 40 pounds in the last year...yikes! I typed that number and had to stop and think of that was correct as it sounded like an awfully large number, yup it's correct...40 because he is up to 164.

Riley has been having fun but I can already tell what is in store for me. Her best friends in the neighborhood are all gone on vacation for awhile. I forgot how this neighborhood clears out for the summer. Guess it should be quiet around here for a bit and I will hear "I'm bored" about 1000 times a day. We are working on making her birthday party invitations. So far, they are pretty cute...we will post a photo soon.

Kyle??? His check up was moved to Monday because we had a round of phone tag trying to set up the one for tomorrow. I'm OK with this. The scheduler kept apologizing but I had to reassure her that it's really ME who wants him in every 6 weeks and that he is supposed to be checked every three months. Oh my insecurities with crazy, stinkin' cancer!

I finally put some new photos in the album (yes KimD, there is a picture of Baby Bella from yesterday in there)! Speaking of which, she should be here in a half hour so I need to go get ready for her....

thanks for stopping in!

Denise

Sunday, June 15, 2008 9:45 AM CDT

HAPPY FATHERS DAY!!! May you all have a day filled with great times and great memories this day. To those moms that are filling both roles, you too deserve an amazing day as I know all too well how difficult it is to wear both hats. Regardless of circumstances, today is a good day to relax and enjoy!

The photo above was from yesterday at my parent's house. I had a great shot of him mid-air jumping into the water but when we got home and I loaded it, he told me not to put it on because his mouth "looked funny"! OK...first of all, it is a great action shot and since when does Kyle even care what I put up? Is this the beginning of the end here...is he turning into a teenage boy????

More photos later as we are going back over to my parents house for the day. More swimming, bbqing, relaxing, and of course a little bit of NASCAR.

Enjoy your day...I hope it's a relaxing one!

Denise

Friday, June 13, 2008 8:38 AM CDT

TGIF...just wanted to type that because, after all, it IS Friday! Not that it matters too much in the summer months for us yet Friday always has the celebratory feel to it.

I am sitting here sipping my usual morning (ok afternoon and late afternoon beverage), coffee with Coffeemate creamer...although I am trying the caramel vanilla creamer and not the hazelnut. Oooh crazy I know!

The house is quiet as it's still a bit early for my kiddo's to arise. This is the best part of the day, except I was too tired to clean the kitchen last night so it's rather messy right now. I am going to the gym this morning, yes nearly two months off, and I am going to even take my weight class. I have already told myself to lower my weights or I won't be able to bend over let alone sit on the toilet seat for the next three days if I don't. Those squats, lunges and hip hinges will really do me in with such a long break!

The kiddo's are home today but are supposed to go see Kung Fu Panda for the second and third time tonight with their dad. I will most likely have Baby Bella (yes KimD, I will get photos of the precious girl and post them soon)!

I have the weekend with no baby, AND it's supposed to be gorgeous out. I have every intention of taking the kids to my parents both Saturday and Sunday to bbq, swim and relax. I am so excited to do this as I have not done any of that yet this year. The boys can't wait to swim...the one activity I can get all of the children to participate in.

Kyle's appetite has decreased these past few days, I noticed he isn't even eating until after 1 pm most days and then he is only eating one big meal a day. I don't like this, but now I am on top of it and will shove food in him. I ordered his vitamins online last week and we still haven't gotten them. This drives me crazy because it's been probably a month since he has taken any. At least I had those to fall back on when his diet was random.

Yikes...I just looked up and realized it's Friday the 13th.

Anyhoo, I am totally rambling and taking up typing space and your time. All is well in the Lindgren home. Kyle has his physical and blood counts next Wednesday. Please pray for *perfect* blood counts.

Please continue to pray for Kyle Adams (www.caringbridge.org/visit/kyleadams) as he has one darn problem after another yet is a fighter like no other. Continue to pray for sweet Jumpin Jax (below) and Matthew as well (also below), as I know he and mom want to get home for good!

Thanks for stopping in, have a super great weekend! Enjoy your Fathers Day (even those mom's who fill those shoes themselves on a daily basis)! I will get new photos up from the pool this weekend!

Denise

Tuesday, June 10, 2008 3:37 PM CDT

Tuesday afternoon, Riley is at the pool with the neighbor girls. Ty just returned home from summer school, rode his bike to Safeway to pick up lunch, played with the baby and is settled in downstairs. Kyle also had lunch, played with the baby and is settled in downstairs. I think they hide in the basement because it's cool, dark and quiet. Baby Bella is on the couch next to me, snuggled up with her bunny blanket, taking a nap.

I am thinking I will run to Costco later (actually, I should run with gas prices the way they are, but I think I will drive since it's many miles away)! I have heard they have cheap eye exams there. I am in need of a contact exam before I can order more and I am tired of wearing glasses for the past two weeks.

Kyle's next exam is creeping up at Children's Hospital. I am finally feeling better about things, although I always know teh future is uncertain....I am breathing again, I am finally learning to breathe.

Kung Fu Panda had this in it, and I just loved it:

Yesterday is history, tomorrow is a mystery, today is a gift - that's why it's called the present!

Enjoy your day!

Denise

Sunday, June 8, 2008 9:59 AM CDT

Sorry I haven't updated much to you loyal followers out there, and I do see you as I notice how many visitors we get here. I've been having mental time I suppose, which we are all entitled to. Today is a day to breathe for me. I am enjoying a quiet morning in the kitchen. I am plopped at the table, enjoying the views of the golf course, listening to the deep breaths of Jazz, sipping my trial of home brewed Caribou Coffee and hazelnut creamer (KimD, thanks for the heads up on Caribou, Starbucks will not be thanking you...it's tasty)! Occasionaly I will hear and see a golf cart buzz by and a nasty word or two out of someone's mouth (is golf that intense?)!

I was supposed to meet a girlfriend at church at 9 am, however she called and is running late...we agreed to meet at the 10:30 am service. It's been three weeks since I went and I certainly feel the need. God is the one constant in my life and I need Him. He certainly never fails me, let's me down, disappoints me, betrays me or leaves me. He listens and responds accordingly and we certainly share a mutual respect for one another.

Anyhoo...Kyle is doing so very well. I had a nasty nightmare the other night, one which I won't get into or cause my brain or nerves to remember but I think you all get the hint, except it wasn't ALL but CML. Enough said!

The kids are doing really well. Ty starts summer school Monday which should be interesting as he has been pulling all nighters with those dumb online video games. I need to put him to work...! I had Baby Bells for about 15 hours yesterday, I can say she has become part of our family and it's almost odd when she leaves me at night. I'll have to post a picture of her soon. My children just adore and love her, as do I.

We were leaving Walmart yesterday and I noticed they had an Alex's Lemonade Stand outside. I stopped and chatted with the family running the table. Their dear friends son was diagnosed with a brain tumor recently. I dropped what cash I had in their little glass fish bowl and thanked them for helping raise money and awareness...please be sure to do the same when you see them.

With that, I am going to have a nice and quiet day here in cloudy, overcast Broomfield Colorado. Perfect weather for church and a cat nap on the couch later. I think I deserve it. KimD, would love to catch up with you later...it appears we are playing a nasty game of phone tag!

Please pray for Kyle Adams (www.caringbridge.org/visit/kyleadams), such an amazing young man!

Thanks for stopping in again!!!

Denise

Monday, June 2, 2008 9:59 AM CDT

Two and a half more days of school and all three children will be home for the summer, OK, I keep forgetting Ty will be in summer school. I am a little unhappy now that I think about that one because I will have to drive him at 7 am Monday through Thursday, and then go to pick him up at 12:30. Hmpf!

Kyle is not going to school tomorrow, it's his fifth grade party and I am sad he doesn't want to attend. He did not say this but I know the reason he doesn't want go and it makes me terribly sad for him. It's at the local water park and I THINK he is not wanting to go is because of his scar from his port. It's pretty prominent and I'm sure he doesn't want to deal with what others might think, feel or say. How sad is that!?!? I wish he didn't feel that way...

In the Fall, all three kiddo's will be in three different schools. I was figuring out my commute to get them all to school on time and then get myself to school on time. I have been pretty excited thinking about returning myself. Excited but nervous. When I went before I was 29...now I'm 39! I feel OLD to be returning...old but determined to do well.

The house is STILL on the market, we've had a few showings but no bites. Every day it appears that new signs are going up around us. The market is just horrible, and I know this is the case EVERYWHERE!

With that, I have little baby Bella sound asleep so I am going to get a few things done around here. One being that annoying *chirping* from one of our smoke detectors, it's been going on for days and I have nailed down which one it is. Funny, everytime I decided to hunt for that particular one...it miracleousy (did I spell that right?) stops chirping.

It's a beautiful day here in Colorado...hope it is just as beautiful where you are!

Denise

Friday, May 30, 2008 1:32 PM CDT

Today's journal update comes compliments of Zayla's mom (www.caringbridge.org/visit/zayla). Please read and act accordingly, we as cancer parents are beyond frustrated at the lack of publicity, funds raised for pediatric cancers, research, and treatment options available to our innocent children. Please help us in this fight!

Denise

I wanted to share something I learned about on Wednesday while watching the Today morning show. There is a new group called Stand Up 2 Cancer.

You may not have heard of it yet, but you will. It was formed by entertainers....sports figures, actors, musicians, etc. All of the local networks nationwide (NBC, CBS, ABC, etc) are participating in this telecast on September 5, 2008 to raise funds. Now, don't get me wrong, I'm glad that there is a group trying to raise cancer awareness and raise funds for cancer research. BUT....

There are some heavy hitting organizations on board, including the American Cancer Society, the Susan B Komen Foundation....but no pediatric cancer groups were invited to be a part of it and NONE of the money raised is slated to go to any pediatric cancer research groups.

Getting on my soapbox now....

The American Cancer Society gives less than 1 percent of it's funds to pediatric cancer research. Do you know what the most common pediatric cancer is? Well, it's leukemia. And yet, the Leukemia and Lymphoma Society gives less than 5 percent of their funds to pediatric cancer. (But they love to have our kids involved in their Team in Training, as "front men" for their groups. Nothing like a bald headed sad little kid to pull in the dollars, huh?)

And the kicker of it all? They are holding this nationwide telecast in OUR month�Pediatric Cancer Awareness Month!!! Yep, I am �jealous� once again. Jealous that �other� cancers get recognition and support. I guess there just isn�t �enough� children dying of cancer to get the attention of the media moguls. Maybe they would think differently if they were the parents of Delton, Elijah, and Ethan. These three cancer warriors lost their lives in the past 3 weeks to the �good� and �curable� cancer. Their mothers were part of the online listserv I belong to�.and truly �our� community is heartbroken once again.

Ok, why is it important for funds to be given to pediatric cancers, as opposed to adult cancers?

Because, kids cancers are different. They have different causes, different treatments. Kids are so far behind adults, when it comes to knowing what chemos work, what cells mutations are involved, etc. Kids get more chemotherapy, for longer periods of time, at higher doses, than adults.....reread that, it's true. They just don�t know what works for kids, so they bombard them with high doses of chemo.

You won�t see an adult get 2.5 years of more than 10 different chemotherapy agents, for frontline treatment of leukemia.

There has only been ONE new drug developed in the last 20 years for pediatric cancer....ONE. Yet, survival rates for kids with leukemia have improved dramatically over the last 20 years. Why? Because of the number of children, like Zayla, who are or were involved in clinical trials. More than 90f the children are in clinical trials, as opposed to less than 20f adults. And do I dare mention the �new� tools like MRD (minimum residual disease) that actually SAVED Zayla�s life (plus her amazing doctors)! I have already posted before the importance that these tests be continued�.the problem is there is no funding!!

So our kids are on the forefront of trying new and different combinations of drugs, yet funding is far behind adult cancers.

So, what can you do?

1. Please join our group at Stand Up 2 cancer...it's called "Kids with Cancer". We are hoping that if enough people join, we can influence the directors to funnel some monies to pediatric cancer. It's free to join, just go to www.Standup2cancer.org and register. Beware, how they have it set up right now it is hard to find the group�.it is not alphabetical. I am not fundraising for them until they include our kids. And I am letting everyone I know about this, so can you too!!

2. Email Stand up 2 cancer and let them know that it is not acceptable to leave out pediatric cancers. When you go to their website you can select at the bottom of the screen�.Contact Us. If you want, you can cut and paste part of this letter to them�.give them the facts folks!!!

Thank you and I'm getting off my soap box now....

Have a GREAT weekend�and thank you for your support!!

Chris and the amazing Ms. Zayla

Thursday, May 29, 2008 9:12 PM CDT

The *sick germs* are slowly leaving the residence. I could not be happier but probably should start knocking on the wood table that my large for my size feet are propped up on.

Today, I went to Riley's classroom to listen to her bug report. I was so happy that I found the charger to the camcorder so I could record it in it's entirity. I felt like an almost bad mom during her music class performance a month ago as all the mom's and dad's had their camcorders going to record that special moment. Me? I had to use my cell phone camera and captured some blurry photos of her. I have a photo in the album of her and I sharing lunch on the playground today. I think it turned out pretty cute actually.

Tomorrow is field day at school. I do not have baby Bella so I am going to attend Riley's field day at 10 and then Kyle's in the afternoon. Hopefully, I will get some more great photos. They are almost done with school for the summer (well not Ty who is scheduled to attend summer school until July 17th)!

With that, I am going to get the kids ready for bed thsi evening. Thanks for stopping in, more photos soon!

Denise

Wednesday, May 28, 2008 4:10 PM CDT

What a super great day...!!!

I awoke to many e-cards, emails, guest entries, phone calls, texts, and facebook birthday wishes. The funny part is, I really didn't remind many that it was my birthday so the outpouring has been awesome! It feels great!

Baby Bella and I then walked up to the store, I picked up a bottle of white wine and items to make dinner and a birthday cake. I had offers to attend dinner tonight for my birthday, but truly...the best gift is to spend my special day with my children. Although, I did take rain checks for this weekend since the kiddo's will be with their dad!

Bella and I came home to put chicken and rice in the crock pot. I saved the cake for Riley to make when she returned home from school.

I had a special delivery in the mailbox, thank you Stephanie for the Starbucks gift card and mug, oh and a great birthday card that had me dancing (Girls Just Wanna Have Fun, oh girls just wanna have fun...)! I love Starbucks mugs...and coffee of course! Then as I was quietly feeding Bella, the doorbell rang and when I opened the door I was greeted with a beautiful bouquet of mixed flowers in a very, pretty purple/lavendar vase. Awwwww....you know who you are and thank you so much - I love them!!!

I picked the kiddo's up from school and Riley was so excited to make my cake that she ran next door to borrow a special cake pan, yes I am getting a teddy bear cake today.
I am so excited to have dinner and teddy bear cake with my children tonight. Although I wish some great out of state friends of mine could be here to help celebrate my birthday, you all did an amazing job from afar.

Kyle and Riley just ran down with envelopes for me.

Riley's envelope says:

To Mommy (and a hand drawn picture with "you" and "me")
xoxo
From Riley

Kyle's envelope says:

To Mommy
I love you
you are the
best mom
and I love
you for helping me
go throgh cancer
and a lot of other things

Talk about grabbing my heart! They both had gift cards for me as well, one I Tunes and one for Starbucks. I think they know me well.

So for now, the teddy bear cake is baking, the chicken and rice is cooking, the wine is chilling, and we are all content and happy! Thank you all for making my day so amazingly special...I feel so loved!

The Birthday Girl

Monday, May 26, 2008 10:01 AM CDT

Sorry for the lack of updates...we are still fighting sick germs around here!

Saturday morning, Riley woke up crying in pain. She has still not recovered from her bout of strep, the Z pack didn't do much at all for her the previous week. I called the family doctor and hauled her in right away. She developed a nasty ear infection and he was surprised it hadn't popped yet. I told him she was also complaining of major body aches and a very sore abdominal area. He asked her to show him where and she pointed to the lower area, he asked her to point to one area that hurt the most, she pointed to just below her belly button. I knew where he was going with it and told her if the pain moved over to another location "tell mommy right away". Yes, I think he was thinking appendix.

He put her on augmentin but was still pretty concerned about her complaints and appearance. I agree that this is the sickest I have EVER seen her or HEARD her. He feels if this medication doesn't do the trick that he will draw blood work on her. I believe he is just being extra cautious giving Kyle's health and really his lack of persistance in 1999 and 2000 when he took so long to draw blood work and diagnose him.

She appears a bit better today. I am continuing the Augmentin and Advil for pain. She certainly isn't close to 100ut I am watching her.

Kyle, he is still a bit sick as well but considering that I am too...I am not so worried. He and Ty swam their hearts out at my mom's house yesterday. It was so great to see, not so great to see was the lack of proper application or sunscreen so his cheeks are (shall we say) *colorful*! Note to self, sunscreen him better in the future.

School is winding down. Ty will be done Wednesday, the other two have a week of activities and field trips. I am anxious to have the summer with the kids (remind me later when I am pulling my hair out)!

Today is overcast and cold, baby Bella will be here as well. I think it's a hunker down day...unless of course we have another showing on this house that will not sell!

Enjoy your day with your loved ones...pray for those battling cancer and/or all aspects of it right now: Kyle Adams, Julia Nesbitt, Jumpin Jax, Matthew K, Zaida, my Aunt Bette, and so so so many more!

Remember those serving overseas and/or lost their lives fighting for this country, fighting for us...protecting us!

Thanks for stopping in,

Denise

Tuesday, May 20, 2008 3:53 PM CDT

Not too much is happening around here. The sick germs are still floating around as I wound up with all signs and symptoms of a cold Monday morning but was hoping it was allergies. No such luck as today, I started guzzling Tylenol cold and flu daytime. I also received word that baby Bella is also sick today. I have been resting on the couch the majority of the day, as actually would be sleeping if I could breathe. My head is very congested.

Kyle has been doing well. He and Riley are feeling better, which makes me happy.

I survived the mental stresses of May 18th and all that it might have brought me. The day (relapse day 4 years ago) didn't just pass me by like I had hoped, you know where you wake up on the 19th and say, "oh yeah, yesterday was the relapse anniversary". I did spend a brief moment recalling that days events four years ago, yet I didn't dwell on it. It came to me first thing in the morning, I recalled it, and then it was gone. Phewww! Another milestone for me and my mental state.

Off to rest some more...and wish that I could breathe long enough to take a nap!

Thanks for stopping in...

D

Thursday, May 15, 2008 8:44 PM CDT

Can you all say CRANKY PANTS!?!? Oh my gosh, I am certain if you look up the definition in the Denise Lindgren dictionary, you would see MY photo!

Let's see...starting Monday, Kyle and Riley were both getting ill. Thinking it was Tyler just *sharing* his "virus" from last week, I just treated per the doctors orders...cold medicines, fluids, rest.

Riley really went downhill quickly. Her throat was burning, her tummy hurt, fevers started, and then came the cries of pain. Wedensday morning I grabbed the good old Energizer flashlight and plunged in down her mouth. Yup, there were those lovely white puss lumps on the back of her throat. One call the doctor, several hours later and both kids in the office...Riley has strep, Kyle "not yet".

I think Kyle does have what Ty had as his symptoms and complaints aren't the same as little Miss Riley's. She was put on Zithromax and is getting better. Which is good because she laid in bed for two days, texting my phone and calling me. While some of those were simply too adorable to read, others were driving me crazy. I must say, this is the sickest I have ever seen her. I slept minimal time on Wednesday night and gulped a fair share of NyQuil last night just in hopes to get some sleep and ward off any lingering strep germs.

I also have had baby Bella all week for 10 to 11 hours a day....can you all now say CRANKY PANTS?!?! I am exhausted, tired, and ooops, Riley just hollared in between coughs, "momma...momma, my throat hurts!" In her raspy sick voice.

Calgoooon take me awayyyyyyyyyyyyy....!!!!!!!!!!!!

Sunday, May 11, 2008 5:07 PM CDT

Happy Mother's Day!

I hope all of you Mom's are having a super great day.

I woke up to get ready for church and as I got out of the shower, I was *showered* with gifts from my kids. They gave me a Bath and Body basket of goodies, singing cards (which were truly adorable), homemade cards, and homemade gifts. They really melt my heart and it's so neat to see how much they love me and think I am the greatest mom to walk the planet. Feels like I did something right!

Church was really good. The series is on dating and it really get's a person thinking. I look forward to going each week and listening to the series. I really need to get Tyler there too...he is approaching that age and would love for him to hear the sermon. Of course, they offer free CD's of each service so I have been grabbing them. It never hurts right!?

After church, we made french toast and hashbrowns. It was delicious. I did some much needed yard work, caught up on Grey's Anatomy, and am now relaxing.

Riley has been busy with the neighborhood girls, the boys have been playing games, watching television and hanging out. All in all it's been a great day so far...

Hey KimD...I had a BIG bowl of ice cream with chocolate syrup, smothered in nuts! Aren't you so proud of me????

Off to enjoy the rest of my day! Please send a prayer up for Kyle as he is starting to flirt with fevers, this does not make me happy!

Happy Mom's Day...from a proud mommy!

Denise

Friday, May 9, 2008 10:09 AM CDT

UPDATE:

Kyle's oncologist called this morning with the pathology report, indeed is another chalazion. Good news but I wish he would stop getting them!

She also confirmed no worries on the high white blood count because he had that surgery earlier that morning!

Phew! Thanks for checking in! Today...we are great!

No news from pathology...although, I shouldn't say that because somehow last night, I missed a call from Children's Hospital at 6:29 pm. No message was left and so I am running with *no news is good news*! Of course, my ringer is on full blast and my phone is duct taped to my side (OK not that dramatic...but close). I am thinking it's a viral thing on his eye. He's been doing wonderfully and I have no reason to believe otherwise.

Kyle did stay home from school yesterday. He slept in and relaxed most of the day. He made it this morning and his eye looks pretty good. I wanted to take a picture and post it without the bandage but didn't have time this morning. I will make an attempt after school today.

I will keep you posted on the pathology report. I am off to enjoy my Friday with the cute little baby Bella.

More soon....

Denise

Wednesday, May 7, 2008 6:44 PM CDT

Ugh...I am exhausted and tired, and yet I know Kyle is that much more exhausted and tired.

We woke up at 5:30 am, headed out the door, took Riley to the neighbors house. We picked up my mom and headed straight into Children's. The weather was horrible as it was pouring down rain with lightening and thunder, cars hydroplaining and traffic slow moving. (Weather would have been awesome had I been able to sleep in this morning)

We arrived and checked Kyle in. Mom went over to the coffee shop and grabbed us some muffins for when Kyle was able to eat. I didn't bring my camera but realize now I should have as this was sort of new to us as it was all at the new hospital. We had not been through the new day surgery but the facility is amazingly pretty and HUGE. They needed the room.

Kyle was checked in and given his history we weren't given the newbie speech really. Mom and I went back with him as they put him under. He chose the "watermelon" smell per his brothers recommendation. Kyle quickly went under and we left the sterile, white surgery room in our fancy *marshmellow* suits! That was a picture waiting to happen.

Mom and I grabbed some coffee and ate our muffins as we waited. The doctor said it wouldn't take but 15 minutes yet it approaced to 20 before we saw him. He came out to tell us the sugery went well. He removed the lump on his lower lid and decided he indeed wanted to send that to pathology, he said it did not appear to look like a chalzion. While doing the surgery he did see another lump on the same eye, under his upper eye lid (same spot as the last) and removed that one as well. Yes, I took a deep gulp and knew that Kyle would be much more sore than anticipated.

We went back where he was already awake and in pain. I know he was trying to be so brave and so tough but he hurt. He tried just tylenol at first but quickly accepted the morphin. 15 mintues later, more morphin. He ate a grape slushy, which gave him a nasty tummy ache...and more medications. I felt horrible for him and as he lay there, I couldn't stop some memories from flooding my head. Oh the memories...but I did remind myself often he was there for a quick eye surgery, not cancer related!

He had to stay in recovery for at least a half an hour after his last dose of morhpine. We were then wheeled to discharge, another private little room, where he quickly fell into a deep sleep. He desperately wanted the patch off his eye but was told he could remove it tonight. We haven't done this yet.

We never made it to lunch but I did run down to the cafeteria for some food. While everyone tried to tell me the food was much better at *the new hospital*, I found it hard to stop those flashbacks as well. I thought "same food, cleaner appearance"! I settled on two turkey panini sandwiches, yes one was for mom, and some Vitamin Water.

When I returned to the room, Kyle was awake. He had no appetite really but he did manage to eat half of his blueberry muffin.

We went up to oncology at 1 for his appointment. I think that was the quickest we had been in and out of that place. I think they could tell by the patch, swollen eye lid due to being so exhausted, pale complextion, and lack of energy that Kyle was ready to go home. He had his physical, Dr. Albano asked questions about the eye surgery, said she would check with pathology tomorrow for results, checked to see if his blood counts were back, and sent us home. We agreed upon another visit in 6 weeks. I'm just not ready to go to three months, this is going to be a weaning process for me...a slow one at that but she was perfectly fine with that.

Kyle fell asleep in the back of the truck, mom and I were pretty quiet on the drive home as well. Draining, such a draining process....in all aspects.

Kyle immediately went up to bed and tucked himself in. I followed. I woke up at 5:15 pm and checked on Kyle, he is still sound asleep. Checked my caller id, no counts were back yet. Riley is still on her play date. Hold on...Kyle just woke up and wants to remove his patch....it doesn't look too bad (mom he came down at exactly 6 pm to remove it...LOL)!

Anyhoo...they called with counts and I am a bit uncomfortable with his white count. I have a little bit of a yuck in my tummy but keep repeating that his white count is elevated due to the surgery, AND if Dr. Albano was worried about it, she would ask us back sooner than our six weeks RIGHT???? His ANC is high but that is also due to the elevated white blood count.

I know so many of you are worried about me and I will do my best to stay calm and positive. I will do my best not to think about this and await my 6 weeks.

OK, I have to run...no time to proofread, his throat is killing him, have to pick up Riley, get to the grocery store for popsicles and make dinner...times like this, I think I need some help!!!!

Thanks for the love and prayers everyone!

Denise

Tuesday, May 6, 2008 10:33 PM CDT

Schedule:

5 AM - Rise and shine for hospital, consume lots of coffee

5:50 AM - Get Riley to the neighbors house (thanks Lucy)

6 AM - Pick up mom and head to Children's Hospital

6:30 AM - Check in to Day Surgery

7 AM - Call the house to make sure Ty is moving (thanks Mindy for taking Ty to school for me)

8:30 AM - Kyle's eye surgery is scheduled

After surgery, find brunch some place close

1 PM - Kyle's oncology appointment, physical and blood counts

Thanks Rosemary for taking Riley after school for a playdate. Thanks Dad for picking Ty up from school for me.

Thank you for all of the emails, guestbook entries, thoughts and prayers...we will keep you posted. I'm sure we won't have anything about the eye back as it is being sent off to pathology (not his eye, the lump...have to find some humor right)!

Much love...until then,

Denise

Monday, May 5, 2008 8:12 PM CDT

Welcome back Denise...!!! Wow, I can tell you going back on my Lexapro has made me much better. I hadn't realized the downward spiral I was on as I was attempting to wean off of it. A few days ago, I found myself emotional, snapping a the kids, and just plain old unhappy. Today, I ammm back! Yippee, hooray, hoorah...!

With that, today was a good day. I had the baby until 5 pm and we had a good day. We walked to the grocery store and we walked to pick Kyle and Ry up from school. Wow was it good seeing those two after just a few short days. We all walked home and talked about their day. They are too sweet!

Kyle and I made dinner together. He had a burger and his Barleans greens (he actually missed drinking it while at his dads house). I had halibut with yummy pineapple jalapeno salsa! Now we are all just hanging around enjoying a nice night together!

On the other good news front. I made a call to the college I was going to attend last fall for the paralegal program. They called me back instantly and said I surely can be put on the list to begin this Fall. I will have to apply for financial aid and am hoping I can get some grants as well. She told me that I don't have to worry about that part of it until July or so. So...as it is, I am re-enrolled into the paralegal program for October with a May completion date. That made me feel good, really good.

I have a special prayer request for my Aunt Betty in Florida. She has been battling with cancer for quite some time now, it appears she is scheduled to have surgery tomorrow on her intestines and to see how much the cancer has or has not spread. She's very weak but needs this surgery so please pray for the best for her! I can't believe I haven't said it in awhile but cancer stinks!!!

With that...I am off to spend some time with the kids!

Thanks for all of your support through the years...today was a good day!

Denise

Sunday, May 4, 2008 9:45 PM CDT

I hope this update finds that you all had a good weekend. Kyle and Riley are currently with their dad. They left yesterday and I will see them after school tomorrow. I sure miss them when I don't have them. Ed did tell me he took them up to the foothills this afternoon to hike and picnic...that's great!

I went to church, took a nap, went for a run, ate a big fat burrito, cleaned and now am settling down to a glass of wine and bed soon. Church was great today, I find that I am relying on church and actually right now wish it were more than once a week. It sure keeps me going, and I like the series right now (relationships and dating...yikes)!

Kyle's surgery and appointment are Wednesday. We have to be to Children's terribly early. I have a neighbor taking Ty to school and my dad picking him up. Riley is shuffling over to my neighbors at 6 am, before school...and then heading to a playdate after school. No baby on Wednesday so now I can just focus on Kyle all day. This makes me happy. I am nervous a bit, not so much for the surgery but for counts a little bit. May 18th is approaching and I just want to get past it.

He and I are still drinking our "greens" (Barleans greens to be exact). I just had to pick up another jar today after church. I also had to continue on with my lexapro. The withdraw was not good and I found myself not ready to be done. I am going to see if my doctor will just continue to give me samples to avoid having to afford it. Maybe I will have to look at alternative therapy methods in the future.

Well I am a sweaty mess and want to go to bed early tonight. I have been rather run down and tired...I think a good sleep will do me some good!

Thanks for checking in, I can't wait to get my kiddo's back tomorrow!

Hugs and Happy Monday to you...

Denise

Thursday, May 1, 2008 6:45 PM CDT

I spoke too soon...!!!!

I thought I was done with my anti-depressants. I thought I weaned myself off properly and that I was doing soooo good and then it hit me today. I had no children, no baby to watch today, and it was SNOWING outside. I grabbed a cup of coffee, my fruit, granola and yogurt...plopped on the couch in my sweats and decided to catch up on my shows. I had worked all day and night yesterday with Jen (thank you thank you) on this weekend neighborhood garage sale. I just wanted to relax this morning...ALONE!

I first watched American Idol, Paula...Paula...Paula...dork! And I agreed with Simon (as I often do)that the first round of songs were horrible. I like Brooke but really feel like David or David will win...anyhoo, then I learned Brooke was booted and thought maybe it would be dreadlocks boy (this made me a little sad). Then I watched Dancing with the Stars, OK I have a crush on Jason Taylor (as does his dance partner I think)! I am not even a fan of Cristian but I almost burst into tears when he got injured at the end of his dance, and then they scored him not so well which made my eyes well up. I thought to myself, "what the heck, I am about to cry but I don't even want to!" That was weird....

By noon, I had a terrible headache and dizzy spells. My eyes would cross and I'd lose my balance for a second, then I'd get a rush of wanting to throw up. This kept happening and the episodes were getting closer and closer (ummm no, I am not pregnant)! Then I just wanted to lay down when it hit me, "this is exactly how I felt when I tried weaning off the valium the wrong way!" I think it's been a week since I took a Lexapro, I was down to taking a half a tablet every few days. Anyway, I was not enjoying how my afternoon was progressing so I took a half of a Lexapro and feel great again. This is not good, I think I have 6 tablets left and then that is it....I am eagerly anticipating suggestions on the guestbook!

Oh not to mention, the XBOX 360 broke last week, we had the PS3 replaced the other day as it was under warranty and then today, as I was vacuuming...I sucked up the cord to the Wii and it shredded, now unplayable. Yes, I almost cried since it seems that I just can't do anything right these days...I'm frustrated and non-medicated!!!!

Anyhoo...the Children's Eye Surgery Center called this afternoon about Kyle's eye surgery next Wednesday. The surgery is scheduled for 8:30 am, perfect I say to myself...until she says that means we have to be there at 6:30 am. In Denise terms, leave the house by 6 am...I already see the baseball cap on my head, make arrangements for Ty and Riley to get to school, what if I have baby?, can't take the neighbor boy so I better tell his mom now, and oh by the way I am slightly nervous (and unmedicated)!

After eye surgery, his regular oncology visit will be at 1 pm that afternoon. Note to self: make arrangements for Ty to get home from school and Riley to have a playdate.

Anything else I am missing??? Breathe you say??? I'm trying!

Denise

Tuesday, April 29, 2008 10:11 AM CDT

First off...please pray for Matthew and his family today. They are currently having a bone marrow aspiration to ensure he is still in remission. He is having so much bone pain and trouble keeping platelets, let alone making them. Nancy is a nervous wreck...she will post later this afternoon with preliminary result. (Their link is below)

Also, I learned recently that Elisha has passed away from uncontrollable bleeding. Oh how my heart has ached for his mom and family. I haven't found the right words to send to them during this horrible time but please include them in your prayers. Here is their link:

http://www.caringbridge.org/visit/elishalacson

Kyle is currently upstairs in bed. He could not fall asleep last night and this makes him terribly emotional and frustrated. He crawled into bed with me just before midnight and slept with me until 6 am. Oh how this reminds me of our many days and nights of treatment, the memories immediately flooded my brain as I rubbed his soft warm back to help him fall asleep. He then moved to his bed at 6 am. I woke him up at 8:30 to see if he wanted to sleep some more before school. He cried, clearly needing more sleep...so there he is still, resting! I have no problems letting him do this, he needs his sleep. Poor thing! We were trying to brainstorm last night as to why he might be having trouble falling alseep. Nothing is bothering him, nothing is on his mind, he isn't worried about anything, so we narrowed it down to the Mountain Dew he drank at this dad's house. I hope that's the case anyway!

My nerves are in knots a bit as we approach May 18th. The same terrible date, 14 months off therapy that Kyle relapsed in 2004. The date causes my hands to sweat profusely and my heart to race with anxiety (fine time to quit the medications huh?). I take many deep breaths and wait for the day yet I know as it approaches I will just get more nervous, then it will be May 19th and I will think "oh yeah, May 18th passed!" Kyle and Riley will be with their father that weekend so I do believe this girl will surround herself with busyness...!

With that being said, I am becoming tense and nervous for May 7th as well. Blood counts...please Lord let Kyle stay in remission and live a long, happy, healthy, cancer free life!!! He deserves that much!

So now I sit and think, "hmmm maybe I have quit my medications a tad bit early!" I believe with the support of loved ones, those that care for me and support me day in and day out, those that love me and are there for me, will help me through this nerve shredding time in my life!

I wonder if I will ever learn to breathe again??? Or will it be that I learn to breathe differently over time!?

Thanks for stopping in and sending all your love and prayers!!!

Denise

Sunday, April 27, 2008 11:43 PM CDT

I think it's official, I am done with my anti-depressants. I have weaned myself of them and so far I am doing well. August would be four years that I had started taking them. I remember when Kyle relapsed in May of 2004, I remember the severe anxiety I felt whenever I was not with him or went out in public. I remember hoping my neighbors would not stop to talk to me, or talk about Kyle. I remember heading down the aisles at the grocery store, I only chose aisles that were empty. If someone came down the same aisle I would grip onto the cart, hunch over it and get terribly light headed. I didn't want anyone to talk to me in fear that I would cry uncontrollably. I felt as thought I couldn't breathe, I couldn't think and I couldn't breathe.

I called my family doctor (had him since 1992) and told him how I was feeling. He called in Ativan. I took it occasionally but I was the anti-drug girl. I typcially refused Tylnol or Advil. I chose natural childbirth for goodness sakes. By August, I was a wreck. I was an emotional basketcase. "Are you sleeping well", my family doctor asked. "Gosh, I think so...I mean I feel like when my head hits the pillow I'm out!" Now how could that have been, maybe my refusal to admit I needed help. I mean seriously, Kyle and I were living at Children's Hospital for months on end. We were in and out, I thought he was heading to transplant, and I certainly had no idea if my son would survive another round of cancer treatments. But sure, I was sleeping just fine! Good thing he saw right through me..."Denise, I know you never have requested medications but I am going to suggest some. I am calling in Valium and I'm calling in a low dose anti-depressant/anit-anxiety!"

Valium...oh my gosh, isn't that extreme??? But wow, the first night I took one of those, I woke up thinking, "I guess I wasn't sleeping at all because that felt awesome!" On top of that, it helped relieve my TMJ, which was becoming unbearable. I was clenching...I clenched my jaw when I slept, when any nurse or doctor attempted to talk to me or even approached me for that matter. I feared they were coming to bear bad news and my body would get tense, tight, and clenched. Thus began my journey of valium and lexapro.

I took the valium every night for three years. While it helped me at first with sleeping, I felt almost immune to it but continued taking it anyway. The first month of it, I couldn't believe the difference. I never realized the impact it had on me. It helped me get through the most difficult part of my life but yet I only got through it. I hadn't realized that it had turned me into an emotion free zombie in the process. The first month off I thought, "wow, here I am...I am no longer numb!" Honestly, I do not think I would have survived without it. I had a child with a life threatening disease, not once but twice...my child had cancer and his future was so uncertain. My marriage was to the point of no return and I was alone in the fight. I had turned away from God and life was out of control, not knowing what each day was about to bring me. So for that, I will never regret taking valium, it got me through...

Now, another year later...I am done taking anti-depressants. I can truthfully say that the dosage was so low that I don't think going off has or will make a difference. Maybe...just maybe I do cry a bit more. I had a good cry today (is any cry good though), oh gosh and not once but twice. I think it's good to have feelings and emotions though. It makes me feel more real...! Now I don't share my tears with anyone just yet. I think that makes me vulnerable. I don't like to be vulnerable. I have this wall built up so high around me, I feel like I always have to protect myself. I have to protect myself from hurt and pain, and when you share those things with others...you become vulnerable. I don't like it because I feel as though I am just setting myself up for more hurt. I don't want to hurt anymore...I've hurt too much in the past!

Wow...I think that's called oversharing myself!!!!

Saturday, April 26, 2008 1:16 PM CDT

This morning Kyle, Riley and I (and baby too) made french toast and hashbrowns. Yum! It is so much fun when we all participate in Saturday morning breakfast. Kyle was on hashbrown duty and mighty fine they were. Actually, they were the best part of breakfast because we made the french toast on Texas bread, it's soooo thick that it was hard to cook all the way through.

I also have an accomplishment that I didn't think would happen. I have Kyle drinking 8 ozs of Barleans Greens every morning. I was at Vitamin Cottage buying his multi vitamins when I passed the "Greens" section. While we have tried them before, I thought there was no way I would ever get Kyle to drink it. I picked up a container of them and bought them anyway. When he got home from school, I told him he should drink 8 ozs a day to keep his cancer away...and he did it. So cute after his first drink of it he said to me, "if it should help keep cancer away I will drink it, I KNOW I've had to drink worse before!" I can confirm that that is true...I've witnessed it!

I now have the baby down for a nap, the kids are upstairs playing and pricing things for our community garage sale, and the kitchen is pretty clean!

The weather is cold and yucky, so it's going to a stay home and stay warm kind of day for this crew. Ty is in Missouri with my dad...everyone is accounted for!

Have a super weekend everyone, thanks for stopping in!

Denise

Wednesday, April 23, 2008 6:57 PM CDT

Today has been a good day around here. I had the opportunity to get some errands run before the children returned home from school. It was their "short day" so they were out one hour and fifteen minutes earlier than usual. Do you all have "short days"? I believe these days are for teachers to meet. Along with short days, I am rather certain my children each has at least one three day weekend a month, maybe more, and sometimes a four day weekend. Again, I believe for teachers training and meetings. I cannot recall EVER having so many days off as a child. If I think about it for a moment, I might even want to say it felt like we went year round. OK, that is not true but I know these kiddos have more days off than we certainly used to. Are they getting a better education than we did with all of these "teacher meeting and training days", I am not so certain. NOW...I have to apologize to all of my teacher friends (after all, I am sort of kidding).

Tomorrow is Bring Your Child to Work Day! Another day off if the children want it. Kyle wants to take it, I told him he'd have to change a diaper or two and possibly feed a bottle to the baby. I think he wants to work at home with me tomorrow, like most people probably do these days!

Tyler is heading to Missouri from Friday morning until Tuesday afternoon, yes...he has a five day weekend! My dad is going to drive out there and bring Ty with. Should be good for him. I took him to get his haircut upon request so I think that is a slight sign of excitement on Ty's end.

I am hoping to take the other two to see Nims Island. We've been wanting to do this since it came out and a new theater just opened up around the corner. I may have to tote baby with us as I am not sure of my hours or days with her. It's never a set schedule. I can have her 10 hours one day (any day of the week....weekend included) or I can have a random day off. Today, was my day off!

Time to run, I am trying a new chicken and rice recipe for the kids today. It's an Italian style with a can of diced tomato and lots of cheese. I will keep you all posted. I have been in a recipe rut so anything *kid friendly* can surely be sent my way. I've made a few things out of Matthew's Fundraising Cookbook and everything has been very tasty!

Enjoy your evening....and thanks a bunch for checking in!

Denise

Tuesday, April 22, 2008 11:19 AM CDT

Home Sweet Home!

Made it home early yesterday morning. Lawrence is a very cute place with so much character. I had a tremendous time with my friends and would recommend others stop in for a visit there as well. KU is a neat campus, the town has some cute shops and great places to eat, loved watching the Kansas Relays and of course...the time spent with friends was nice!

Now back to Colorado. It's always nice to return home and especially to my children. They missed me terribly as I missed them. It's such a great feeling to have them verbalize that to me all day and night. They cling to me (even scored a back rub)and we truly enjoy being back together as a family...awww the moments.

Kyle's eye surgery is approaching and he seems pretty relieved of that. I don't think it physically bothers him but I know he wants it taken care of (as do I).

He has the countdown all set, 6 weeks of school left. I think he is ready for summer break. I look forward to another summer home with the children as well, might be my last.

Jen, thanks for watching my dogs and home this weekend. KimD, thanks for the cute cards you sent me. It was sure nice to return from a good weekend and to know you were thinking about me.

Baby Bella will be here in 35 mintues so I better get some more things done this morning...

thanks for stopping in, all is well here is sunny Colorado (at least today it is)!

Denise

Thursday, April 17, 2008 11:41 AM CDT

Kyle's eye...this one has me a bit bewildered. Last night, I had him take a hot shower, put baby shampoo on a wash cloth, and before he got out of the shower...I instructed him to scrub his eye (the lump and the crusties that have developed). He did just that and came in to show me that the yellow/green pus thingy ma dealie came off. I looked closer and now the *lump* is bright red again and looks like it did a few months back. I am now glad we have an appointment to have eye surgery the beginning of May. Even though the thought still makes my stomach a little off.

Today, I have baby Bella. She is sleeping and I am trying to get loads of things done around here. I have to get the laundry done and kids packed for a weekend with their dad. Ty is heading to my parents house, Jen is watching my dogs...and I am off and running for a weekend getaway that is so much needed. So if I fail to update...I am in Kansas! Hahaha, is that a great weekend getaway??? I was promised that Lawrence is the greatest place on Earth!

With that, I am going to get some breakfast in my tummy and hussle...

Thanks for checking in, aside from the yucky eye ball problem, Kyle is doing GREAT!!!!

Hugs,

Denise

Wednesday, April 16, 2008 7:09 AM MTN

Sleep deprived...well that will help my problems now won't it??? Yikes! Went to bed at 2 am and woke up at 6:15 am, wonder if Baby Bella will allow me to nap with her this afternoon?

Things here are going well. Kyle's eye is just yuck, plain and simply. So the "lump" has totally become inactive looking however it went from being white and filled with pus, it is now almost looking *yellowish green*. Not good, as I always associate that color to infection. Although, I think if it were infected the entire site would be red and sore right??? Do you all like how I try to talk myself out of things...or into things...!?

For those worried about my decision to ditch the anti-depressants, I am weaning off...slowly tapering. Not only is it for financial purposes, I just don't like that I've been on them since Kyle relapsed and I thought this was also a good time to go off of them. And so while I offically have become off kilter (putting it nicely), I think this decision is a good one. You know, it almost is causing me to deal with so much that I have tucked away into the *please shred* pile.

I did not realize how badly one can suffer from PTSD when having a child with cancer. I guess I really just kicked it into gear when I had to with Kyle and NOW...when something triggers those memories, watch out (huh Sean and Kim?).

With that, I need to attempt to wake a very lazy and over grown teenage boy for school...I wish he even had the slightest desire to DRIVE (never thought I would say or type those words out loud)!

Thanks for the love and encouraging words...

Denise

Tuesday, April 15, 2008 11:33 AM CDT

Sorry for the delays, I have been having some personal issues around here that did not allow me to get online until now.

The weather has been amazing here, I've gotten so much yard work done. This is a good thing as I have been struggling with life since Sunday. I am trying to chalk it up to the fact that I am weaning off my anti-depressants so I hope you can all hang tight with me. As for those (and you know who you are) that ask WHY on Earth I would do such a crazy thing...it would be called no health insurance and I do not want to pay out of pocket for them any longer. Let's see what happens during this process...yikes! I know I've been wanting to have a good cry for the last 48 hours!

Kyle is doing very good...he is just so truly amazing and certainly keeps me grounded. He is a true gift from God in my eyes!

Off to get some things done...thanks for stopping in and pray for myself and the family as I struggle to keep my feet grounded right now!

Thanks...I need you!

Denise

Saturday, April 12, 2008 12:25 AM CDT

Happy Saturday...it is such a beautiful morning here in Colorado. The kids and I had a great morning so far. I have Izzy (baby) all day today and she is up in my bed snoozing. Kyle came in and said he was hungry so out of bed, Riley and I jumped!

Kyle, Riley and I made delicious french toast, hash browns, and pink lemonade (OK I had my coffee with hazelnut creamer)! What a team effort as Riley cracked the eggs and stirred them up with milk and cinnamon. Kyle then was in charge of flipping them as they cooked. Riley then took over keeping the hashbrowns stirred up. Ty...he slept!

After we all ate breakfast, I taught Kyle and Riley how to do laundry. Kyle had needed some clothes washed so I told them to round up their laundry baskets, bring them down to the laundry room and I will teach them how to do laundry. They eagerly jummped up and bruoght their baskets down. Kyle was pretty into it, and I am not surprised in the least. Funny as I see the differences in the kids, I told Ty that I taught Kyle to do laundry (as I've showed Ty numerous times), and Ty says, "good Kyle can I pay you to do mine now!?" Hmpf....

The kitchen is cleaned up, bellys are full, baby is still sleeping, and we are ready for our day. So far, so good!

As for Kyle's field trip. I picked him up Wednesday afternoon and he asked if Tian could come over. "Sure" I said and they both hopped into the truck. I turned over my shoulder and smiled, "how was the field trip guys!" And Tian quickly replied, "I made more money than Kyle" and as I wanted to say, "get out of my truck you self confidence deflater..." (not really) I ended up saying, "so it was fun?" They both agreed it was a great time...yeayyyy!!!! And Kyle reminded me that he made the right choice leaving his backpack behind as well. Thanks for all of you who were worried about Kyle's big day!

On another note, I have a family that is in need and I have mentioned them before...

http://www.caringbridge.org/visit/elishalacson

She is in need of so much as she tries to battle to keep Elisha getting his treatments and supporting her children. Please visit their website as she needs everything and anything. Her sons are 8, 5, and 3...she is even in need of clothing for her boys. I am thinking that I will put together a box of my boys old things and send them off to her. As I have said, anything will help her...! Please visit their website today!

Enjoy your weekend everyone and thank you so much for checking in on us...

Denise

Wednesday, April 9, 2008 9:46 AM CDT

Good morning to you...

Isn't that photo above soooo cute!? This is Kyle as he came home from school yesterday:

Kyle: Mom, I need a nice pair of jeans and a nice shirt for my field trip tomorrow.

Mom: Wow, OK...jeans! Let's go to Kohl's in a little bit and see what we can find. (Kyle has not wore jeans since he was 2 years old and I was allowed to dress him)!

Kyle: What time do you think we can go?

Mom: Let me finish making these cookies and we will head out!

Kyle: OK (as he continues to talk about jeans and a nice shirt and the fact he is supposed to "comb" his hair and look nice)!

Done with the cookies...

We go to Kohl's and not only is he now worried about how much money I have to spend on his new outfit, but will we have enough to buy him a lunch as well. OK, this 11 year old child carries so much unbelievable stress on his shoulders that I wish I could reassure him that everything will be just fine.

We find a very nice pair of Levi jeans (on sale) and he picked out the shirt above (on sale and it had to be stripped, i am going to take a wild guess his teacher used a stripped shirt as an example)! We get to the register and I see in his eyes that he is so pleased with his clothing choice but he is now worried about the cost. I smile at him and tell him how handsome he is going to look.

We head to King Soopers to pick out lunch for his field trip. Again, he is picking what he wants but certainly watching the price. I coax him to buy whatever he wants to eat and we also pick out dinner for when we get home. Tasty soups, hot bread and roasted garlic...yum!

Next worry for Kyle as we now have his lunch chosen and paid for...a comb.

Kyle: Mom do we have a comb at home?

Mom: Gosh Kyle, I don't know but I think a brush will work.

Kyle: She said to comb our hair and look nice.

Mom: Kyle, I think she meant like fix your hair nice, not necessarily using a comb...I think a brush will work just fine.

We arrive home and the hunt begins for a *COMB*! He really thinks he needs to find a comb for his hair. I later reassured him (with much convincing) that she really just wanted them to look nice for this field trip (should I mention the field trip is an all day field trip to a bank in Denver, Young Ameritown, where they teach children about money, banking, jobs, etc...no he wasn't taking a field trip to some modeling agency!)

Kyle was so worked up and had so much anxiety about this trip that he came in my room in tears last night because he wanted a good night sleep and he couldn't fall alseep. He layed in my bed as I massaged his back, we discussed that maybe his mind was wandering with thoughts of the field trip and he was nervous. He said that wasn't true but eventually I massaged his little, anxiety filled head to sleep.

This morning he showered, brushed his teeth, BRUSHED his hair, and got dressed. He came downstairs looking so handsome and cute that I had to take photos and share them with you. He packed his lunch and wrote his name across the bag. What a responsible little man he is and I am so proud of him. I do wish he worried a bit less but maybe someday that will be a good thing for him...maybe, it also might drive his future wife totally nuts right?!?!

I drove him to school and I could see how proud he was to look so cute and be so prepared...until the next worry came to him:

Kyle: How come some kids have their backpacks and some don't?

Mom: Some do and some don't but your homework is in there and you probably want to turn that in?

Kyle: We don't have math today though.

Mom: OK babe, you decide!

And out of the 4Runner he jumped (leaving his backpack behind) with a huge, proud smile worn across his face! I too was proud of him...these simple moments honestly bring such joy to my heart and tears to my eyes. I appreciate every moment so much more now! And while I wish I could take away his anxiety and worry (and maybe give some to big brother), I know this is a huge part of who Kyle is! Now, I just hope leaving his backpack behind was the right decision because his homework will not get turned in...a whole 'nother anxiety filled moment that might ruin his great day!

More about his big day this afternoon...pray he let's loose and truly enjoys it!!!

One proud mom....Denise

Tuesday, April 8, 2008 9:57 AM CDT

Good morning...

It never ceases to amaze me, the amount of *hits* on Kyle's site still...one year off therapy! It always warms my heart to know that others are checking in on us!

I finally called to schedule Kyle's eye surgery to remove the yucky lump on his lower eye lid. I put if off and put if off until I did a mental check of why I was doing this. My conclusion, FEAR - plain and simple! I really fear having them remove it and tell me what it is. Now I know that it's some weird little thing that is going on and most certainly is probably (ha...certainly but probably) not cancer related in the least bit, yet I fear them removing it and sending it to pathology! 7 plus years of mind games and the fact I am weaning off my anti depressants finally is taking a slight toll on me.

Needless to say, upon taking the plunge yesterday, his eye surgery will be done at Children's Hospital on May 7th (time to be determined).

The weird thing is that these lumps grow, they get very large and red, swollen to the point I think they might explode but don't, and then shrivel up dry out. This latest one is totally drying out and looks like it could flake off at some point (but I highly doubt that)! I don't get it yet I guess we may get to the bottom of it at some point here. I am not even sure what this *thing* will look like come May 7th, that is quite a ways away but the next available time slot!

Today, all kids are in school and I am without the baby. After I finish my bowl of oatmeal...I may take a dog for a walk. Striker is on visitation with Ed and he is the only healthy dog we have (although impossible to walk on a leash anyway). Jasmine is in serious pain and struggles to walk and even sit right now (due to finances, I am still waiting for Ed to take her back to the vet). Zoey, she is turning 10 on the 15th and she is so FAT (120 pound German Shepherd is not good, although Ty claims it's all fur) that my walk will really have to be short and sweet, otherwise I am dragging her big white behind along the way (up to the point that I seriously have to take her off the leash and let her wander home at her leisure because she is THAT slowwww....). I am trying not to make fun of Zoey because I am quite certain if I were 70 plus years old and rather "stocky", I wouldn't want to be taken for any leisure walks either!!! OK...so maybe I should throw on my Ipod and forget walking ANY of my broken dogs...!!! Now that's an idea!

Enjoy your day and thanks for the continued love and support!

Denise

Saturday, April 5, 2008 10:57 AM CDT

Good morning...

Kyle and Riley have been with their dad since Thursday after school. I made it to the gym, grocery store, and did some yard work yesterday. It was a beautiful day here in Colorado, sunny and clear. The mountains were toppled with snow and the sky was such an amazing blue. I am hoping today is just as incredible.

I went to Blockbuster last night looking for a documentary to watch. I was in the mood to watch something educational and true. I spent over an hour browsing the aisles and I fell upon a DVD titled, "Crazy Sexy Cancer". I picked up the case and it read, "A story about looking for a cure, and finding a life." Using a gift card from my neighbor (thanks Mindy) I rented it and drove myself over to Coldstone Creamery. Using another gift card, I bought Ty and I big bowls of fattening ice cream (Coffee Lovers for me, Strawberry and Bananas for Ty). I must admit as my plan was to plop on the sofa, toss the DVD in, and eat my ice cream...I think I ate the majority of it on the drive home. It was so delicious, I love the chunks of heath bar!

I then decided that I would get my comfy pj's on and crawl into my big empty bed with my laptop and the DVD. I fell in love with Kris Carr from the moment I saw her. What an amazing gal for sharing her journey with the world. It was pretty informative on alternative therapies that she researched and is using. It's just what I need as I not only would like to prevent myself from ever having to take the journey through cancer (am I crazy, *journey*...journey sounds like I am taking a year long vacation to some remote foreign territory to enjoy the culture, "enjoy" and "cancer" do not belong in the same sentence). Anyway, as many of you know...I am always looking at alternative ways to help Kyle from ever having to endure the hell that he lived for over 7 years of his young life.

My problem tends to be, it is nearly impossible to have an 11 year old alter his diet to a raw food diet. He is typically open to new things but c'mon, he's 11 and seriously some of the things this young lady was drinking even made me get those quick little shivers of YUCK!

So today, I am going to have a nice breakfast alone, get some more yard work done, head to church, and then I will watch the special features on her DVD (simple detox, get jucied in the kitchen with Kris, and more interviews). There was a wealth of information on the DVD and I am going to research a bit more of it. I was glad to see that we have already begun to make some of the changes that she did, encouraged is more like it.

Here is her website: www.crazysexycancer.com

With that, time to get out of bed (after all it is just past 10 am here, I think I like this "ME" time)!

Hugs to you and may your day be filled with lots of warm sunshine and time with those you love!

Denise

Thursday, April 3, 2008 1:59 PM CDT

Lost - by David Wagoner

Stand still. The trees ahead and bushes beside you
Are not lost. Wherever you are is called Here,
And you must treat it as a powerful stranger,
Must ask permission to know it and be known.
The forest breathes. Listen. It answers,
I have made this place around you.
If you leave it, you may come back again, saying Here.
No two trees are the same to Raven.
No two branches are the same to Wren.
If what a tree or a bush does is lost on you,
You are surely lost. Stand still. The forest knows
Where you are. You must let it find you.

Wednesday, April 2, 2008 11:54 AM CDT

Thank goodness Kyle's tummy aches went away rather quickly this past weekend. I am currently working on having the eye day surgery scheduled and should have that set this afternoon.

I have been busy spring cleaning around here. I spent all day yesterday on the house and still have so much more to do. I am literally on hands and knees scrubbing the hardwood floors and they look so much better, and smell better too.

I guess part of cleaning is a mental thing for me. It's an opportunity to think about life, my hopes, goals and dreams. It's time to reflect upon me, myself and I. It's been a good thing. I am also reading "God Will Find a Way" and that too has been an eye opener for me. I think when times get tough and my thoughts become scattered, it's truly important to rely on Him, let Him lift me up and carry me. Seek for answers...so yes, He and I have spent a few days chatting and I am doing my best to just listen!

There have been no bites on the house at all, it is still on the market but that's OK. When the time is right, it will sell.

The weather has perked up a bit, however I did hear of rain or snow tonight. The kids leave with their dad tomorrow and will be gone until Sunday night. I am trying to make plans for myself, which might include catching a movie Friday afternoon, and lots and lots of yard work. I'd like to go away but really have no place in mind so I suppose I will bury myself in the house. Not a bad thing since it is in need...

Not too much else going on around here, I have little baby Bella today and we have been enjoying our time together. She is such a sweet and precious little girl!

Back to scrubbing the floors (and for a mere moment I visualize myself as Cinderella on hands and knees, run down and tattered...waiting for my prince to arrive and sweep me off my feet...can you all see it?)!

On that note....off to work I go...

Denise

Sunday, March 30, 2008 12:56 AM CDT

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

Amen.

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.

Proverbs 3, 5-6

Officially one year off therapy...the day came and went, and the following day has not been any more comforting for me.

Kyle woke with pretty bad tummy aches on Saturday, he looked very pale with dark circles under his eyes. Fear? That is an understatement.

I went to the local store and bought two liters of Ginger Ale and delivered them to him. The only thing he had until dinner time was a large glass of ginger ale. He finally requested pasta for dinner and had two large bowls. His color is returning and the circles are disappearing.

I went to church last night, boy did I need that. The subject was...FORGIVENESS. It was a great service and as always, the music calmed my heart.

I then made a commitment to a "girls night out" and as I had fun with the girls, I often find myself wondering how I at times get myself into such predicaments. I did not want to go but I did. I had an alright time but as usual, found myself wishing I was with the kiddos. I often am torn between trying to live a life and being the best mom that I can be.

I woke this morning with many thoughts on my mind. I made the children breakfast, put dinner in the crock pot, and am settling in to watch the NASCAR race. I wanted to attend another church service this morning but didn't make it. I think I will view it online later tonight. Today, I am buried into many thoughts and emotions, many mixed and confused. I suppose today is a day of rest....after all, isn't that how God intended Sunday's to be!?

Denise

Thursday, March 27, 2008 6:57 PM CDT

We are home from Kyle's eye appointment. We went to a Children's Eye facility in Boulder and they did a very intensive exam on him. This made me so happy because with 7 years of chemotherapy in him, you just never know what damage can occur.

They did a complete eye exam and everything was perfect. He passed all tests with flying colors. Once with the eye specialist, we discussed his medical history and the previous "lumps" on his eyes. He was rather shocked that the previous doctor removed and drained his "lumps" right in his office. This doctor is having me schedule an appointment with out patient day surgery at Children's Hospital. He will then remove the mystery lump and send it off to pathology. He agrees it is not a stye, nor does he think it's a chalazion either. He did not appear worried but would like to send it to pathology because he has had so many in such a short period of time.

I am relieved to get to the bottom of it all if we can. This doctor made me feel much better than the last one. He is also going to make contact with Dr. Albano (his oncologist) and keep her updated on the appointment and what we plan on doing.

With that, it's a dreary day here in Colorado. Steph and I are relaxing on the couch and the children are all entertaining themselves at the moment.

Thanks again for all of your love and support...

Denise

Wednesday, March 26, 2008 4:21 PM CDT

New counts are above, everything was normal.

I talked to Dr. Albano about my fear of his last one year off therapy visit and the fact that he never made it from the once a month appointments to the every three months appointments. To make me feel better, she offered to continue with the once a month appointments until I was comfortable. We settled on every 6 weeks for now...my stomach is in knots and churning as fear and anxiety set in. For some strange reason, I thought this would get easier...and it's not! Bad time for me to think about weaning off my anti-anxiety medication.

Tomorrow is Kyle's eye appointment with a specialist in Boulder. I will keep you posted on how that turns out as well.

For now, I have a phone call to make (KimD) and time with my Stephanie....!

Thanks for the emails, guestbook entries and prayers...!

Denise

Tuesday, March 25, 2008 8:30 AM CDT

We are so quickly approaching the one year off therapy mark for Mr. Kyle. I cannot believe how quickly time seems to pass us by. When I think about a year ago, so much has really happened in that time. I was served divorce papers on Easter Day one year ago, I managed to survive a nasty divorce and keep myself in tact this past year, I am surprisingly still in my home (for now), the kids are doing really well in all aspects (OK Ty is a challenge at times), and I too have managed to keep myself functioning and happy in the past year.

Having a child with cancer truly changes every ounce of your being. It changes who you are, how you think, and what you do. I believe that cancer makes you stronger in many ways and certainly changes your entire persepective on life. Things that you once thought to be important are no longer that, your priorities change. I think you figure out what life is realy about. The material things are certainly no longer of value, the petty things that can occur in relationships and friendships no longer seem to get you down nor do they bother you quite as much. As long as we have our health, we are happy and content with what is given to us. I view each obstacle as a lesson from God, "what is He trying to teach me here?"

It seems that I often find myself gently whispering that "God has a plan for me" and "God will not let me fall"! Those two things keep me chugging along, carrying hope for a much better future. And while this morning, I woke to thinking that one year off therapy, I find myself fearing that I may be reverting to my pre-cancer days with my thoughts, feelings and emotions....I still believe I have become a much better person today because of all that we have endured. And to quickly remind myself of what is important in life, I check on my cancer kids and get a huge dose of reality (like splashing your face with cold water from the sink)! Each of their battles and struggles, the loses and victories on a daily basis...the positive test results, the negative test results, the relapse, the off therapy parties. Those things remind me that life is precious and we should enjoy each and every moment that we have been provided!

With that, sort of depressing entry for some odd reason, I am off to DIA to pick up my Stephanie! I am looking forward to a week with her...we both need eachother I believe.

Thanks for stopping in...may your day be filled with lots of lovin' from your good friends!!!

Denise

Sunday, March 23, 2008 10:43 PM CDT

Happy Easter to each and every one of you! I hope you all had a wonderful day with your families and loved ones. We had a very nice and relaxing day ourselves.

Sorry we have been away for over a week, we've been amazingly well and had a great week. No worries...KimD, you know we love you!

The St. Baldricks event last weekend was wonderful. Kyle got a kick out of it actually. I posted photos in the album of the three local firefighters who shaved in honor of Kyle. I was impressed with how many individuals shaved their heads (children, teenagers, men and women)! I seriously had a brief moment of thinking that would be pretty darn cool to do myself. Kyle is thankful I did not follow through. The link is above, you can see photos of those who have already shaved their heads in honor of Mr. Kyle. Many have reached their goal or are very close to it. If you still want to donate, you have time! St. Baldriccks is an amazing organization and I am happy to see how much they continue to grow each year!

Kyle has his hospital appointment on Wednesday and FINALLY an eye appointment on Thursday in Boulder. I am anxious to fix that eye of his and figure out if we can prevent these in the future or maybe even get to the root of it all. I was putting this newest picture up and he came in and said, "look at that kids eye" (giggle giggle)! What a smarty pants!

All three are on Spring Break this week and I am excited to have them home. We really don't have plans to do anything out of the ordinary but Stephanie is coming to visit on Tuesday morning from Florida. I am excited to have my "little sister" arrive for the week. I have missed her terribly and enjoy the girl time!

I am pretty sleepy but figured I was wayyyy overdue on my updates....! Enjoy the newest pictures and please continue to pray for Kyle to remain cancer free as we approach his one year off therapy in just a few short days!

Hugs...

Denise

Saturday, March 15, 2008 4:45 PM CDT

Happy 2008! We are ready for a great year and the best St. Baldrick's event ever. Last year at Lansdowne Arms our goal was $5,000 dollars & we ended up raising almost $14,000 dollars! This year our goal is $20,000 although our dream is to raise over $50,000. Please help us in our goal and contribute towards our dream to the best charity and awareness event in the country!

You can help by---
* shaving your head!
* volunteering to help collect money for the event!
* getting your church or school aware of the event!
* shaving anothers head! (must be a licensed beautician)
* attending the event to help support the shavees and shavers!

Here is the 411 for the 2008 event:>)

March 13, 2008 -
7 PM @ Lansdowne Arms
Volunteer appreciation party and last final hoorah before the main event!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
March 16, 2008
1 PM!
St. Baldrick's Event!

Location - The town center in Highlands Ranch sponsered by Lansdowne Arms Bistro and Pub & the Highlands Ranch Community Association!
9352 Dorchester St.
Highlands Ranch, CO 80129

St. Patrick's and St. Baldrick's Celebration 2008
11 am - 3 pm
Bag Pipers, Step Dancers, Kids Games, Face Painting, Cotton Candy, St. Patrick's Parade, Prizes, Silent Auction, Food and much much more &
!!!!FREE ADMISSION!!!!

Let the cutting commence at 1PM!

-------------------------------------------------------------------------------------------------------------------------------
PS---DON'T WORRY IF YOU MISSED THE MAIN EVENT! There is a second cutting between 7:30 PM and 8:30 PM on St. Paddy's day (March 17, 2008)at Lansdowne! If you can't make it on the 16th please make arangements to attend the follow up party!

Please don't hesitate to email me at lansdownehr@hotmail.com or cswanson35@yahoo.com! Or call for more information at 303-346-9136 - Lets go team 2008!
THANKS TO EVERYONE - CHRIS & THE ENTIRE LANSDOWNE CREW!

Fundraising Goal Achieved
Fundraising Goal:$20,000.00
Funds Raised:$14,467.00

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

Happy Saturday...please attend the above event if you have tomorrow free. Jen, my mom, Kyle, Riley and I are going to be there by noon. There are three Broomfield firefighters shaving there heads in honor of our hero Kyle, I told them we would surely bring him to witness the shaving...! How awesome is that!

If you cannot attend but would like to donate, click on the link way WAY above for St. Baldricks and you will be taken to the page of people who are going BALD in honor of Kyle.

Thanks so much...!!!

Denise

Friday, March 14, 2008 9:16 PM CDT

Friday once again! I made it my first full week of watching baby Bella, I have returned back to my gym class as my shoulder is *almost* good enough (still a few things I can't do), and I returned to church last week. I feel good, no...wait...I feel great. I mean besides the fact I cannot move my hamstrings and walk like I just rode a horse for the last 24 hours, and trying to tie my shoes...forget about it. I am so SORE, but it's a good hurt!

Kyle's eye is the same, it hasn't grown and certainly has not shrunk. He doesn't complain about it at all anymore, I am just anxious to get him in to the eye doctors. Thanks Jen Jones for sending me what you found on styes and thanks Jen James for suggesting that "prid". My concern with prid is that I am afraid to put it so close to his eye. What do you think???

Don't forget to click on the link above for St. Baldricks. Kyle's list has grown so much and I am in awe of the amount of people shaving their heads in honor of Kyle. I saw on the news tonight that the Avalanche players also particpated in St. Baldricks and raised so much money for childhood cancer research. Way to go...! There are so many going bald soon for such a great cause, please support them by donating if you can!!!!

Have to run, I am watching Baby Bella tonight and she just started to fuss....

Denise

Wednesday, March 12, 2008 8:47 AM CDT

Victory...!

I found an eye doctor to take Kyle to for his amazingly, much too large and painful stye. There is a Children's Eye Care Clinic in Boulder and they will see him on March 27th, one day after we see Dr. Albano at Children's. It sounds like this eye clinic may even try to get to the route of his eye problems and make sure they aren't something more serious. This I certainly like!

His stye has not gotten any larger or any more red in color however it still looks painful (as you can see above). We still put hot compress on it at night yet I don't see it doing anything significant. I think if it is a stye, it is supposed to form a *head* and maybe pop on it's own yet I don't see that happening either. I will attempt to stop self diagnosing his poor eye and leave that to the doctors!

Yesterday, the realization came to me that Kyle is nearing his one year off therapy date. What another milestone for him, and while I should be celebrating...I feel my chest tighten, my breath deepen and my heart race as the mere thought of it does create a sense of fear and anxiety. We continue to live each day with our motto of "one day at a time" however the turth be told a part of me fills with panic when I also know that 14 months is as far as we made it the first time around. I know with every ounce of my being that we will pass that date and I will hopefully breathe a bit easier once we do.

Life in the Lindgren house has been good. We are also approaching the one year that I have become a single mom. I think about where we were last year at this time and we really have come such a long way. While there are still uncertainties that lie ahead of us (and gosh who doesn't have those?), I feel we are in a much better place right now with an amazing future ahead of us. I do know that we will have good days and bad...yet as long as I keep the faith, I know we will come out better than ever. I remind myself daily that "God will not let me fall..." and this I whole heartedly believe. He walks along side of me, carries me when I am too weak to walk on, and sometimes He drags me when I reluctantly hesitate. He has never failed me and for this I have complete and utter faith!

With that...I have to wake some children for school and baby Bella is going to be here around 10 today. I hope you all have a wonderful day and thank you for stopping in!

Denise

Tuesday, March 11, 2008 1:18 PM CDT

Wow, it's been awhile! I think I've been pretty busy, I failed to remember how high maintenance babies are. I started watching Bella (6 weeks old) Monday morning at 6:45 am. Her parents picked her up at 6 pm, I was in a hot bath by 7 and in bed reading by 9 pm last night. She had a bad day yesterday, had lots of gas, tummy aches, and it was just a hard day for her. Today is much better and we both napped this morning.

I have also been quickly reminded of how I dropped baby pounds so quickly with my children, food!? What's that? I am starving and should be finding some lunch right now but wanted to update Kyle's site quickly before she arose once again.

Kyle has been doing very well...his eye has not (as you can see above). I am going to call another place today so they can take a look at it. It just doesn't look like a sty to me but I am far from having any certification or degrees to back that up!

More soon...going to find some FOOD!!!

Denise

Friday, March 7, 2008

Playing with pictures this afternoon, put one of my *favorites* of Kyle during his battle in the photo album, check it out!

Why is it so hard to find an eye doctor for Mr. Kyle??? I get so frustrated sometimes.

Children's Hospital called me back yesterday and they cannot get him in until MAY!!! OK, I think his eye will physically fall out before that date..! The nice young gal then tells me that she will try to talk to the doctors and see if they can squeeze him in. She also recommended we see the previous eye doctor that Kyle has now seen twice and is terrified of. I told her of his experience with that specific doctor and I would not take him back. I know any procedure that is performed to your eyes, eyeballs or eye lids cannot be pleasant however I am quite certain that it could be a bit more tolerable if the doctor isn't waving a very large needle (that he is about to inject into his EYE) in front of an 11 year olds face as he is talking about what he is about to do.

Anyhoo...this same gal called me back today from Children's to inform me that since Kyle is not immuno compromised that he will have to make a regular appointment which would be in May. Again, not happening? She gave me three more numbers to try...so right now, the sty is growing by the minute, looks HUGE, very red and painful. It seriously looks like it just wants to explode (which I read that they can do and would probably feel great at this point)!

Kyle and Riley are going with their father this weekend so I did email the ex instructions on how to take care of it this weekend until I can get him in to an eye doctor. My only other concern is that infections can develop if untreated or unresolved.

On another little note...please visit this young man who I have become rather attached to as he is struggling terribly right now. He has an amazing attitude, very witty, and so strong. I believe his parents are not helping him through this difficult time and currently his website says he is unconscious and undergoing numerous procedures. I'm scared for Kyle Adams. Please find a moment to sign his guestbook and pray hard for him, he is truly an amazing soul.

With that, I am off to start my day and get the children packed for their weekend.

With love,

Denise

Thursday, March 6, 2008 3:42 PM CST

Isn't the photo above so adorable, I remember trying to take that photo and it was nearly impossible to get a decent one with everyone...this was the best we could do! I can't believe I have so many nieces and nephews! Phew!

Today has been a busy one. Kyle's sty continues to grow and redden. I called the eye doctor my mom recommended however they do not take our insurance. I left a message with Dr. Albano (his oncologist at Children's Hospital) around 11:30 am asking her to refer us to an eye doctor at Children's Hospital, I am just waiting to hear back from them. I certainly cannot wait until his next appointment. I think I will have to take a picture and show you all...yikes!

I think tonight we are going to have more family time. I have some Easter cookies for Riley and Kyle to make and then I am going to try a new recipe. I get tired of making the same things and ran out of ideas. I found a recipe for a spaghetti bake that we are going to try tonight...I will let you all know how that goes. I think with bread and veggies, it should be alright.

Things have been looking up for me this week...now if I could find a way to win the Lotto, I'd be doing so much better! Ha, I think you have to play to win...!

Thanks for checking in on us...we are all doing well!

Hugs to you!

Denise

Tuesday, March 4, 2008 8:46 AM CST

Good morning...

Yesterday was a day of accomplishments. I tackled many things around the house that needed to be done, and of course there are many things that still need to be done. I did make my first trip to the storage unit and it actually felt good. I took a load over in my 4Runner (fitting more than I thought I could), entered the secure storage gates and found my unit. As I sat and waited for the gates to slide open, I felt a smile creep across my face. I cannot tell you all how good it felt for me to do this. I felt some sort of independence and *free* in a way, like this was just the beginning of better things for me. Weird how just this single moment helped me mentally grow in so many ways.

I think I have been caught in a mental trap for so many years (say 18) and I have to remind myself daily that I am ME, I am an independent sole now. I do not have anyone to lean on or rely on, I am responsible for me and my three children. It's a good feeling I suppose, while at times it is a lonely road it's much better than being trapped in a loveless and unhealthy marriage. Besides, I have faith and I believe that someday I will find that special someone to share my life with (OK those that think I am naive, do not rain on my parade today...let me believe for a single moment please)!

As I accomplished so much yesterday and had this liberating feeling that I have needed, I sat down at 6:30 pm to sign on to Oprahs "Awakening" webcast. I had my glass of wine, my book, my paper, pencil, workbook, and bowl of popcorn. I was ready to rock and roll, ready to learn and explore myself. And being the one out of 500,000 to do this, my connection was not good at all and I became quickly frustrated. Sadly, I had to log off but plan on viewing it again today...along with the other 499,000 of you I am sure. I'd love to know who else is doing this for 10 weeks and what your thoughts are (aside from Kim the dropout...LOL). I found the first chapter to be quite good however probably really need to do another read of it.

Oh so about Kyle...as I consume todays journal about my self awareness and my road to happiness, his eyeball looks HORRIBLE again. He now has his third sty and it is driving me insane. Each day when we put the hot compress on it, it looks like it doubled in size and redness. Poor guy! Guess it's time for another eye appointment, and not with the "monster" he saw the last two times.

I also forgot to mention that Kyle was beyond thrilled to learn that he received a 99 percent on that Coke Science fair project he did. He was glowing and so proud, as was I.

With that...I need to start my day! Thanks for checking in on the crew here, we are doing well as today is a good day!

Hugs,

Denise

"If the shutters are closed, the sunlight cannot come in!"

- last night on Oprah's webcast

Monday, March 3, 2008 9:02 AM CST

Monday morning and it is slow moving around this house. Tyler overslept and I am trying to get his big freshman body moving. Riley is still lounging in bed but never fails to hear a word spoken through out the house as she chimes in "what about me" from the distance. Kyle, well he is wide awake and on time as always.

His eye is beginning to look pretty active and sore. We put a hot cloth on it last night, which to me looks like we got things *brewing*.

The photo above is from the arena cross we went to Saturday night. It was a lot of fun as we watched all different age groups race. They had 7 year olds up to grown men and women. The little ones were so adorable as they raced their hearts out. They then had some freestyle which was totally amazing, our favorite was the rider that did a flip in the air on his bike. Jeremy McGrath was on hand as well, but only as a spectator.

Time to round up the troops for school...have a super day!

Denise

Saturday, March 1, 2008 5:49 PM CST

March 1st...spring is just around the corner. The golf course is starting to turn green more and more each day. The birds have been chirping and it's warm. All in time for the snow we are expecting tomorrow, even though my computer tells me it's 71 degrees today.

Kyle, Riey and I have been playing the Wii most of the morning. We all made breakfast and stayed in our pjs for as long as we could. Now, we are getting ready to head to Denver to see Motocross. We've been wanting to go for a long time and decided today we would do it. We are excited but all need a boost of energy as we appear to need naps right now.

I start watching Baby Bella in another week. I sure miss her as it's been awhile since I've babysat her. She is too adorable and I do get my baby fix from having her around. The children are all so excited for me to watch her as well.

Things are quiet around here, just the way I like them! Thanks for checking in on the family...we are enjoying our weekend together!

Hugs,

Denise

Thursday, February 28, 2008 9:55 AM CST

Morning...what a beautiful day it is here in Colorado!! I love waking up to mornings like this.

First and foremost, I HAVE A JOB! I am going to be watching baby Bella once her parents return to work. I am excited as I just adore this sweet little baby girl. I just want to *squish* her (I won't but I want to)! I am excited as it will allow me to remain home with my kids as I really had hoped I could do.

Second, click on the link above in your free time (because we all have sooo much of that...) and see who is shaving in honor of Kyle. Numerous individuals are going bald in his honor in the very near future! I wanted to let you all know that Napper Tandy's Irish Pub in Breckenridge is actually holding a fundraising event on that day. I emailed them to ask if they would like for me to bring Kyle up for the event and will see what they say. I'm thinking we may head up to Breck for it and would love to have anyone join us that might be interested!!! I feel as though it's the least I can do to help in their efforts to raise money for childhood cancer!!! They have the event down as March 21st at 6 pm! I think it would be fun and obviously money raised goes to something very near and dear to my heart!!!!

With that, I am off to start my day...thanks for your continued prayers, love and support!

Denise

Wednesday, February 27, 2008 10:44 AM CST

I want to journal but do not have much to say today. I have been given a few suggestions on Kyle's eye problems, thank you all for your input and research into the subject. I have been given different things to look into and I appreciate all of your feedback. I kind of giggled at the puberty thing, my little boy starting puberty...that one threw me off as he is my baby boy still, at least in my eyes he is!

Kyle was so cute last night, I can tell he missed me so much this past weekend...I giggle inside at the thought of that! I was starting dinner and he was in the kitchen with me, he then says, "anything I can help you with?" I couldn't believe how sweet he was and he just wanted to help me. So, I pulled out the tomato and onion, showed him how to chop them up for me, and he did! He then sliced the french bread for me as it was spaghetti night at the Lindgren house. He continued to stir the spaghetti in the boiling water and helped pull the grated cheese out of the refridgerator. And on top of all that, after dinner...Tyler rinsed his plate without being told AND proceeded to put it in the dishwasher! Think I should go away more often???? The kids made my night last night, they clung to my side and it felt awesome!

Riley took a bath, brushed her teeth, flossed them, cleaned her ears and hustled into bed without being told. She wanted me to braid her wet hair so it would be curly for her class pictures today and off to sleep she went!! By the way, she looked so adorable this morning for school...she too is growing up and while I am proud of her, it also makes me a bit sad!

I won't say there wasn't some spatting between Ty and Riley, yet they were so awesome last night and I am so proud to be their mommy!

Me...? I am not with it yet. I had such a great weekend that it is hard to function and get back into the groove of things. There is so much to be done, that needs to be done, that I have to work on those things today. I know I will feel mentally better when they are taken care of. Anyone want to call a collection agency for me??? That's the one I keep putting off and HAVE to do...it just makes me physically sick thinking about it. How about moving a garage full of boxes to storage??? Sound fun?

Such is life! KimD, can't wait to talk to you this afternoon, I think I need some free therapy as you can surely read me like a book can't you!?

That's it for now! I really need to motivate myself to accomplish some things today! Thanks for checking in on us!

Denise

Tuesday, February 26, 2008 3:44 PM CST

Where shall I start?

I think I have to start with being away this past weekend, as I started to type about Kyle...it appeared to make a lot more sense if you knew that I was away. I left town Friday morning after taking the children to school and returned late last night. I had an amazing weekend in Florida with my friends (thank you with every ounce of my being). I needed the relaxation and rest. I stepped away from my life, stepped away from my phone, and am in awe of how wonderful the time away was for me. I truly NEEDED it in all aspects of the word.

I returned home last night, and it clearly took no time at all for those wonderful moments on the beach with sand slidding between my toes to fizzle away. The kids were very tired when I picked them up. Jen did an amazing job on my house...thank you! Thank you! The dogs were wound up, the children were anxious to see me and yet we were all so tired.

Kyle appears to have finally lost the scab from his sty mutilation on his eye but I am terribly upset and concerned at the fact there appears to be another one starting up on the same eye. Anybody know anything about stys??? Why is he getting them? I cannot figure out why he has now had three of them in such a short amount of time!!!

He missed me so much and that just melts my heart. He told me that he was glad I was home and he missed me very much (while giving me a huge hug). I know it is difficult when he is away, not only from me but from his home as well.

Riley quickly showed me all of the "things" her father had purchased for her this past weekend. And Ty, he was his typical teenage self...didn't mind much if I was home or away. I asked him today if he'd like to head to Florida as a family sometime and he declined. Wow! Although I did recall being a teenager and having that exact opportunity at one point in my high school life. I too opted to stay home, with no parents, so I suppose I should not take that personally (even though I do)!

I am now faced with a day of trying to get back on track with "life" and little desire to do it. There were several showings on the house this past weekend but no offers as of yet. I have an empty storage unit that needs to be filled and a few other "issues" that MUST be sorted out soon (welcome home)! I am mostly concerned about Kyle's eye at the moment.

I think my mind is in a jumble right now, I wish how I felt this past weekend was something I could feel all the time and maybe some day life will be like that for me..! One could always hope anyway...

Denise

Another tea moment (almost like a fortune cookie)-

"There is no remedy for love but to love more"

Thursday, February 21, 2008 9:00 PM

Can you all hear me taking lots and lots of deep breaths? The house is quiet and it is so enjoyable. We ate dinner, Kyle's menu choice tonight...waffles, bacon and freshly juiced OJ. We did homework at 6:30 and watched a little bit of television. Riley fell asleep on the couch as I finished up laundry. The only two things on my "to do" list today that I did not do was clean the bathrooms and the cat litter. I opted to enjoy lunch with my mom instead.

She called up and invited me to lunch and I accepted. We ended up trying a new sushi restaurant in town here. While the food was delicious, the service was...shall I say, on the very slow side. I find myself to be a rather patient person but after waiting for 20 minutes for someone to even approach our table, I did lean over to the young man cleaning the table next to us and kindly asked if we could get someone to wait on us.

I had a great dinner with Jen and Susie the night before, thank you gals for picking up the tab and having "therapy" with me. Thanks mom for lunch today and some additional therapy. I thought I was supposed to be paying for therapy but this is working out to my advantage, thanks so much as I truly appreciate everything.

Riley and Kyle are packing up to spend the weekend with their father. Tyler will be spending the weekend with Nan and Pop. I am looking forward to a weekend getaway (thank you Jen for watching my house, my cats and my dogs...)!

Please continue to pray for those battling cancer today. Regardless of what type it is, how old or young they are, if it's a new diagnosis, they beat it or it has relapsed...please pray we find a cure in this lifetime. I also cannot stress enough how important it is to join the bone marrow registry. Wouldn't it be great when you get your drivers license or register to vote that you could also opt to register to be a bone marrow donor? I am on the registry and hope that some day I have the opportunity to give someone the gift of life!

With that...have a wonderful evening and thank you for stopping by!

Denise

Wednesday, February 20, 2008 4:09 PM CST

Good afternoon...thanks for coming to visit us!

Today is the day the house is finally back on the market. Please pray it sells as I need to move out and on, absolutely no plans once the house does sell but I guess we will cross that bridge when it happens. I just need to get out from being financially controlled by others (is that nicely put?)! I will have a big "mess" to clean up when that happens as well but the mental stress is enough to send me over the edge...! Big sigh of relief for me today!

Kyle is doing really well. His eye (that stinky old sty) is still trying to heal, can you believe that? He has this crusty old scab that I just want to pull off but realize that isn't not a great idea. Dr. Albano also wanted to do that but decided not to as well.

Riley and Kyle are with their father this right now and come home later tonight. I am off to a much needed evening with my gal pals, Jen and Susie. I can feel all of the stress in my shoulders as I type. I need to relax and unwind a bit!

My thoughts and prayers are with Matthew, Jumpin Jax, Elisha, Kyle Adams, and many other cancer families today!

Not too much to report, which is a good thing...

Denise

Tuesday, February 19, 2008

There is a little boy, Elisha, that I have followed for some time. He lives in the Philippians along with his parents and two brothers. Elisha has A.L.L. and has just relapsed for the EIGHTH time in his central nervous system; he also has been declared as mentally retarded from the cranial radiation he has undergone. Since they live in a provished area of the Philippians his parents are unable to afford for him the things necessary for his survival and have only had assistance with the costs of his actual chemo drugs. He has had to miss clinic appointments, blood transfusions, etc. for the simple reason that each time he receives blood, gets lab work, etc the parents must pay at that time out of pocket. They do not have the same insurance that most of us here in the states have. Although he is a candidate for a bone marrow transplant the parents would have to pay $200,000 for one, something that they cannot do. His mother is doing everything possible trying to find a non-profit, generous benefactor, etc. that can assist her family and help save Elisha. They have thought about bringing him to the states for treatment but again they cannot afford it. Please, if you know someone that can help this family then please spread the word. Elisha's mom, Lourdeline can be reached by email address at lourdelinelacson@yahoo.com and Elisha's caringbridge is www.caringbridge.org/visit/elishalacson . Also, please remember that Elisha also who has two brothers that have had to go without the necessities due to all the families resources going to Elisha's treatments.

Please, let us find help for this couragous young man and for his family. Help spread the word and hopefully this email will finds its way to a computer whose user will have the answer to help.

Thank you.

Cyndi P (Jackie's mom)

Monday, February 18, 2008

Good morning...

The children and I had a very quiet weekend as my cold has quickly moved out, thank goodness as I have no time for that stuff.

Kyle has been doing very well. I'm just working on trying to feed him more often. I think he is too skinny and I hate to feel his little bones protruding from him. I also do not like seeing him so pale in color but I quickly remind myself that I too am sporting that "pasty" look, after all it is February! Not all of us can lay on the beach day in and day out...Michael and Stephanie!!!

Today is filled with chores. It's garbage day, I still have to carry loads of boxes and things from my basement to my garage (some stuff straight to the curb), Jasmine has to go back to the vet (her rear end is injured again and I fear it's not good), and at some point I need to return to the gym to keep my sanity!

Please, if you have a chance today...visit bonemarrow.org and order your kit today. It's so simple to join the registry and you can possibly be the person to save someone elses life. Initial procedures are simple cheek swabs and mailing your kit back in. You will remain on the registry until the age of 60 (I believe).

Thank you for visiting us today...

Denise

oops, I just realized I didn't have my cup of tea to put another saying here...!

As for the guestbook entry on Kyle's project above - amazingly the caffeine did not affect blood pressure.

Saturday, February 16, 2008 10:50 AM CST

Saturday? Where have the last few days gone!? I truly hope each of you had a great Valentines Day. I spent it with my amazing children and from the time I woke up, I knew they were going to be my "dates" for the day.

Riley and Kyle were so excited to show me the gift they had gotten me, and well quite honestly...it was an amazing gift. They got me the new kangaroo Webkinz! Now all of you know that I am an avid fan of Webkinz. I know have four of them myself and their home is just wonderful. My newest addition is Lucy (she joins Leo, Lizzy, and Lucky)! The card had three Golden Retriever puppies on it, and Riley wrote each of their names over the puppies. Inside she wrote of her love for me with fancy crooked hearts. Then she wrote, "I hope you get the job!" My heart melted!

Today, as I post I woke up feeling depressed and ill to top it off. I think I have developed a nice sinus infection / head cold. Last night, I babysat my favorite little baby Bella again. After her parents came to get her, I took some Nyquil and crashed, only waking to feel not so good. Thoughts swirled in my head as I lay in bed, listening to the humming of the humidifier. I am not surprised that I am developing some type of cold.

I feel as though my life is a constant rollercoaster ride, and while I love rollercoasters, I am quite tired of the "ups" and "downs" that each new day brings me. I feel as though each time I journal, everything changes...I am great and marching on, I'm terrible and can't figure out life.

This morning I woke with tears streaming down my cheeks. I feel terribly as my throat burns, my ears and nose are both popping and crackling, my eyes are throbbing, and my head is pounding. I lay alone trying to figure it out and the latest mess in my life comes full force to the front of my thoughts. Yes, let me be clear, I have amazing children and I love them with every ounce of my being. Each and every day I thank the Lord for blessing me with them and for keeping Kyle cancer free and all of them safe. However, this journey...this road that I am on needs a serious over haul and I just can't seem to figure it out.

Breaking free from my ex husband was on of the single best things I have done in my life, yet...he has this hold, this control of me to this day that I just want to go away. It's called "financial control!" It consumes me, it ruins me, it controls me...and I hate it. No matter how I try to break free from it, it's just not happening fast enough. This job interview meant so much to me, and it all backfired. I showed up and the girl at the store 'overbooked' the regional manager, "so sorry, but we will give you a call next week!" I leave frustrated as it was a meaning of "hope" for me, a feeling of independence for me, something I really felt like I needed. Today, I am back to square one, financially relying on my ex..!

I was supposed to rent a storage unit and truck yesterday to get one step closer to selling this house and moving on. Guess what? I had to choose between groceries for the children and renting the truck. I chose my children. I have the storage unit rented and boxes fill my home, and I have groceries in my kitchen. I can begin to move things to the unit, however it will include many trips in my 4Runner. That is an option right?

One step forward, ten steps back. I am constantly trying to "cheer" myself on and find the positive, not let anyone get me down. And then times like this morning, my pillow filling with tears, as I feel broken down and battered each and every time I do my best to find hope in all of this. I am so beyond frustrated and tired...my head keeps telling me not to let him get me down, don't let him win but I find myself trapped in the misery of his games. I find it hard to hope for the future at times when each day brings me some form of reminder that he still had this control over me that I cannot seem to break free from.

Let me be clear (honestly clear) that I do not wish to use this as a forum to bash or belittle, yet today is my day to journal and that this part of my life is part our life, part of our journey and in many ways part of our battle with childhood cancer. You see the divorce rate with childhood cancer is HUGE, last I was told was 85 percent. It can make or break you...and with a relationship what was already torn and tattered, it broke us.

I wish with all of my heart that I could just click my heels three times and be "home" but I can't. I'm trying, with everything inside of me...I am desperately trying and some days, I feel like it's just simply not working!

I will get these boxes moved, I will get this house on the market, I will sell this home and find a new one to call "mine!" I will overcome any obstacle thrown my way, I will find a PT job that I love. I will not allow my ex to control me, I will strive to be the best mom and friend that I can be, and I will survive...this I know! I also know the road is never easy but I will survive, I have to!

With that, I am going to finish my oatmeal and cup of hot, white tea (which is causing my entire face to drain of every fluid in it)!

Thanks for checking in...!

Denise

A friend is, as it were, a second self -

Cicero 106BC - 43BC

(these little sayings are on my tea bags)

Wednesday, February 13, 2008 9:41 AM CST

Today, I feel motivated and energized. I feel ready to forge on with life and am eager for change. I took the children to school today and felt hope when I saw that a home that had been on the market awhile had those four letters in red written across the sign "SOLD"! There is hope and I am ready!

Yesterday, the carpets were cleaned in the house (again) and today I am hoping they are dry enough to move things back into place. I am putting more things in boxes and am renting a storage unit this week. Now can you all see me renting a truck and loading up the boxes to move? I think it might be kind of fun and a great feeling of independence...or a serious laughing matter that we may want to video! I was getting myself mentally ready for the challenge and had to laugh when I thought about driving the truck with all of my items in it, I wonder to myself how many boxes will fall and what exactly might break!!!

The children went to the dentist yesterday. Riley is very sad as she has her first cavity that needs to be filled. Maybe she will brush more often now. Ty also had a much needed cleaning on his teeth as well. Kyle actually was free from the dentist yesterday as he had already been.

We then came home and had pasta night here. I also received a phone call that I have a second interview with the regional manager from Limited Too today. I was shopping for Riley's dress (for the father/daughter dance) and realized she is in desperate need of clothes. Everything is too short, worn out, and sporting holes. I can't afford to shop as I did in the past so when I was at the register paying, I made a comment about how I should get a job there to get my daughter some clothes. The discount was 40 percent off if you were an assistant manager or manager, 30 percent if you were a salesperson. My eyes must have lit up as the girl handed me an application. She then informed me that a new store was opening up less than 2 miles from my house in March. Wow...I filled out the application, went to an interview, and now have another one today. Kind of fun, although I was visualizing myself working PT as a sales person so we will see what happens this afternoon. Please pray that things work out for me. I almost see a light at the end of the dark tunnel!

I ask that you continue to pray for Matthew and his family as they are awaiting test results and he is feeling terribly. And pray for Jumpin Jax as she is dealing with a relapse of her AML and looking at transplant in May. Don't forget to join the bone marrow registry as well, it is so very important that everyone be on it...you could help save a life!

With that, I am off to start my day, hope yours is a great one...thanks for stopping in!

Denise

Failure is not falling down but refusing to get up -

Chinese Proverb

Tuesday, February 12, 2008 11:20 AM CST

OK, my "moment" is almost over. Thank you for the kind emails and words of wisdom (Kathy and Kim). I am going to move right along, live and learn!

Part of my state of mind is of course, *my kids*. The cancer world just continues to frustrate me as I seek to try and understand "why?"! Such amazing families, amazing children and they continue to be devastated by this cancer world.

Today, I ask that we pray for Zaida. She is three years old and was the first child to ever be diagnosed with ovarian cancer. She's endured so much as her family continues to hope for a cure for their baby girl! They live in Lafayette, not even three miles from our home!

Please pray for Matthew as he battled severe headaches last night and is currently having tests run on him!

Include Jackie as she relapsed with her leukemia. Jax was off treatment for AML for 6 months and recently relapsed. Tests were performed yesterday to determine the extent of things, so far...Cindy is devastated to learn that there is Central Nervous System involvement. Please pray for them during this difficult time.

There were also more relapses posted this past weekend, Dylan and two other young boys on the Leukemia and Lymphoma Society discussion boards.

Thank you for all of the prayers sent to Kyle as well...we NEED to find a cure!

Denise

Monday, February 11, 2008 11:25 PM CST

Kyles counts are listed above, all were normal and I am very thrilled at that!

Tonight, I am journaling out of frustration, maybe some anger, and the need to just "let go"! So you may leave now or stick around...

Karma - defined by Mirriam Webster - the force generated by a person's actions held in Hinduism and Buddhism to perpetuate transmigration and in its ethical consequences to determine the nature of the person's next existence

Here is what confuses me and frustrates me. I do not understand how so many mean people can exist in this world and not have Karma simply reach out and bite them square in the a$$!

I am not perfect (noted often by myself), I have made mistakes in my life. Some of those mistakes are small and a few are large. I've done things that I have not been proud of but generally try my best to live a good, honest, caring, loving life. When I have made mistakes, I have owned up to them and sought forgiveness. First and foremost, I seek forgiveness from Him and secondly those that I have hurt. If those that I have hurt choose to forgive me, I feel truly blessed and want to move forward. I have lost a friendship or two along the way but for the most part I am comfortable with the friends I have and the life I live. Honestly, I try to survive each day and every day the best I can while maintaining hope, faith, honesty and integrity. I typically am a pleaser, a giver and many times have been found to put myself, my needs and my desires on the back burner in order to please others.

I do not try to inflict hurt or pain on anybody intentionally. Never would I do that. I have made decisions that have appeared to intentionally hurt others but that would never be the case as "heat of the moment" decisions can be bad but not intentional. I would not knowingly and with full thought, EVER intentionally hurt ANYONE...physically, mentally, emotionally...you know what I mean.

I am at a point in my life where I have learned many lessons, feel surprisingly wiser with years, try to do what is right not only in my eyes, but His eyes. Several years ago, when I nearly lost Kyle on the 5th floor of Children's Hospital...life took a dramatic turn for me. I sought a relationship with Him. I asked for forgiveness and vowed to do what was right in His eyes. Although my faith has been shaky at times and my ability to worship every Sunday has come and gone and come again, I feel like I am a good person.

So why and how are there so many creeps out there? What type of pleasure do others get from knowingly and intentionally hurting others? How can people function, look in the mirror each and every day and still be proud of the things they knowingly choose to do in life? Things that knowingly and intentionally hurt others?

I am in awe and shock at the mean, negative, vindictive, cruel things that I see just in my own life. I work so hard to forgive when it happens to me, I try to move forward with a positive attitude...and yet, it continues to happen over and over. Is my problem that I allow these people to do this to me? I'm beginning to believe this might be the case. I trust and believe too quickly. I think all others are honest and decent human beings, when clearly that is not the case. Trust has truly burned me one too many times and yet I continue to do it. Why is that? Because I have faith in people, because I believe in others? Am I naive?

So Karma...karma is not about retribution although at this moment I wish it were! Tonight, I take deep breaths and pray silently to myself for answers and strength. I think some people need to really figure out what is important in life and what life is truly all about. Life isn't about hurting others or getting the last laugh, it's not about "showing him/her" or inflicting as much hurt and pain on somebody as you possibly can. I don't understand but tonight, I feel like I continue to lose faith in people. Just when I picked myself up off the ground, brushed the dirt and grit off my hands and am ready to move forward gracefully...I hit another set back. Why all the obstacles, trials and tribulations in life? Why can't we all just get along, forgive, learn, and move on with dignity and our heads held high.

I don't want to lose faith in people, in relationships, and in friendships but WOW...it's never ending!

Somethings have to change and I need to figure those things out, and the sad part is...as vague as I was trying to be, I will get emails from the greatest people wondering what they might have done to me and the clueless will remain exactly that CLUELESS...thus my hope that Karma really does exist!

Time to go to bed as I have now snapped at all three children and sent them to bed in tears due to my mood this evening!

I apologize but did warn you all...tonight was my vent and I do believe it's been awhile!

Denise

Monday, February 11, 2008 4:09 PM MTN

Counts are in and all in the normal range...thank you so much for the thoughts and prayers!!!!!!!!

Monday QUICK UPDATE:

No counts yet. They will call with them sometime this afternoon.

I did have to question Dr. Albano about the three week appointment and she said that it must have been a mistake on her part so to make up for it, she doesn't want us back for 6 weeks. That was pretty funny and Kyle grinned from one ear to the other. Next appointment is in 6 weeks!!!

Counts should be in soon, no news is good news RIGHT?!

Sunday, February 10, 2008 11:21 PM CST

Too tired to type a huge weekend update (Riley and Kyle were with their dad anyway)

Kyle's appointment was supposed to be Wednesday but Dr. Albano was busy so they scheduled him for tomorrow afternoon at 1 pm. I'm confused because I don't believe it's been a month since his last one, and while I am pretty great at reading too much into why that is, I will assume it's just a fluke that it's so soon this time around.

Next month will be his one year off therapy appointment. And while it is a great reason to celebrate, many of you know that he was 14 months off therapy the last time when he relapsed. And while I typically find myself living in the moment and remaining positive, it's nearly impossible to forget.

I will post tomorrow after his appointment and after we have his blood counts back. Please say a prayer for us tomorrow, I am nervous as usual!

Hugs...
Denise

Thursday, February 7, 2008 1:50 PM CST

Today was Kyle's student led conference at school. He is doing very well and his teacher agrees he is much too hard on himself. His only struggle is math, which surprises me because that was always his strong subject.

I am currently watching new baby Bella again this afternoon. She is laying next to me as I type, each one of my animals has offically licked her, smelled her and tried to suck her breath away. She just falls right back to sleep.

Matthews link is below. His mom posted great news that his test results came back and he is 100 percent donor cells.

On a sad note, Jumpin' Jax (www.caringbridge.org/visit/jacquelinerose) has relapsed. Further tests need to be done because it looks like she relapsed with ALL when her initial diagnosis was AML. Please include them in your prayers during this very difficult time.

OK baby is fussing, have to run...

Denise

Wednesday, February 6, 2008 9:56 AM CST

Good morning...

The photo above is Kyle and his amazing science fair project on the affects of Coke/Caffeine and blood pressure. He hypothesized that it would raise ones blood pressure upon drinking it however concluded that was not the case.

He took our blood pressure, we drank a coke in five minutes (gag, as I cannot stand soda of any form), took our blood pressure again 45 mintues later, drank another coke in five minutes (now I really felt sick and surprisingly the kids couldn't down it so quickly either), then took our blood pressure again. I was surprised that it did not affect our blood pressure at all.

Kyle left this morning so very proud of his project. I hope he does awesome on it. I have to laugh at the photo because his project is bigger than he is. You should have seen him loading it in the 4Runner this morning and then trying to maneuver it out at school. He is just too cute for words.

I will keep you posted on how he does with it.

On a fun note, Riley and I babysat a newborn baby last night. I just wanted to eat her up and Riley enjoyed holding her in her arms. She is so adorable and sweet. The mom, Carrie, and I are now talking about taking belly dancing lessons. She wants to drop some weight and I think it would be a total BLAST (not to mention a possible job in the future as well...LOL, I am so kidding)!

Have a wonderful Wednesday and thanks for stopping in!

Hugs...

Denise and crew!

Tuesday, February 5, 2008 10:08 AM CST

Hello faithful followers...

Oh my house is *almost* quiet today. The only sound is my fingers typing frantically and the ding dong dog chewing what I believe is an empty water bottle upstairs.

My roommates have offically left for their big move to Florida yesterday. I talked to Stephanie this morning and they stopped in Dallas last night. They sure have a long drive ahead of them to get to Florida. Better them than me, although the beach sounds awfully nice right now because it is pretty darn cold and icy here (I know Kim, nothing like MN right now)!

For those that were worried about my state of mind yesterday due to my post, I am still the same crazy, fun loving gal as always. It's just when that anniversary of diagnosis rolls around, it's hard not to reflect upon it. And really, we have survived so much and still keep that positive attitude (Ok most of the time) and lots of faith and hope for the future!

Kyle is doing really well. He is a bit upset about his grades right now. He is used to big brother getting in trouble for his poor efforts so he is worried that I will *get on him* as well. I quickly informed Kyle that I am far from angry about his grades right now. I know he puts forth every effort he can to do well, he has had way to much chemo to the brain that still needs to work it's way out of him, and he has overcome so many obstacles in life that the last thing I will do is get on him about his grades. He tries whole heartedly and that's all I can ask of him.

I suppose I should get moving as I have so much to do and little desire to do it. I don't think the kitchen will clean itself today...no matter how hard I wish it would!

Thanks for the prayers, emails and love! I hope you all have a tremendous Tuesday!

Denise

Monday, February 4, 2008 11:05 AM CST

*Pics of Riley at her dance in photo album*

8 YEARS AGO TODAY

This weekend has been very busy however it didn't really stop me from reflecting on 8 years ago these past few days. Some people tend to forget or want to forget however these days are forever etched in my mind. And while 8 years ago, my then 3 year old son was diagnosed with Leukemia ("the good kind of cancer", "if you were to get one, this would be the one to get"), I reflect on all the things that have occurred in those 8 years. Yes, today I am so very grateful to still have my child with me. Yes, I am grateful I am not forever remembering the day my child passed away from the dreadful disease...none the less, what a difficult journey we've had and I will NEVER forget!

8 years ago today, I sat in Children's Hospital craddling my little boy. He was so pale and weak. He had lost 9 pounds and was down to 26 pounds. My "stocky" little blonde haired boy that loved to dance and hug. He was being prepared to have a mediport put into the left side of his chest. Swollen eyes, confused, scared, and in shock, I sat there 3 months pregnant and my life had just been turned upside down and inside out. I had endless streams of people coming in and out of the room, telling me what a mediport was and how it would be used. I had a "class" on how to take care of it and how the surgery would be performed. I had mounds of paperwork thrown at me that required my signature. Paperwork that explained to me all the things that could go wrong to my child, all the side effects and possibilities which included death. With each procedure came so many risks and uncertainties. My baby boy was about to have surgery because he had CANCER. How could this be!? I had never felt so alone and terrified in my entire life and I was only 30 years old.

8 years ago today, I was about to embark on the biggest and most life altering journey of my life. I entered the cancer world for the first time and it wasn't because I had cancer or my parent had cancer but my baby boy. I learned more about Leukemia and chemotherapy than I had ever wanted to know. I know all the medications, the side effects, the precautions, the risks...cancer consumed my every moment. Survival, taking one day at a time, and learning what is truly important in life. It's not about money, popularity, the house I live in or the car I drive. Life is so much deeper. I live for my friendships, true friendships, the ones that I KNOW someone would give the shirt off their back if I needed it and I would do the same in return. I live for my children, oh the things they have taught me over the last 15 years. I live for the hope that true love exists and that someday I will have it. That someone will love me unconditionally and WANT to take care of me, share their life with me in every aspect and I can do the same fully and completely. I live for family, through thick and thin...they are still my family and are there when I need them in the good times and bad.

You see, 8 years ago today, my life changed. With all of the hard times that we have experienced, I learned so many important and valuable lessons. And while learning those lessons, today...I can hug my son, my hero! 8 years ago, I didn't think he would live another week let alone 8 more years! I am blessed, in so many ways that I tend to take for granted at times. And while occasionally I have lost focus or strayed from what's right and whats wrong...I do realize all that I have and look forward to so much more in the future.

Today, Kyle is doing good. And while the fear of a second relapse lingers within every inch of my body, I realize that I cannot let it consume me (easier said than done). And while it's hard to hope for the future when it is so terribly uncertain, I do have great hope. I hope for so many great things and look forward to the journey today, tomorrow and forever!

Thanks for visiting us today...

Denise

Friday, February 1, 2008 4:17 PM CST

Rileys photos from her dance on Friday are in the album!
New update coming soon!

Yippe, it's Friday!

Riley is going to the school dance tonight. It's titled Father - Daughter dance, however she is bringing Michael with her. We picked out a very adorable outfit for her (this event is crazy and she's only in 2nd grade, I can't imagine Homecoming and forget about Prom!). After school, she is coming home to shower and get ready. Stephanie and I are going to do her hair. We will take tons of photos and post some. They are going to go out for ice cream afterwards.

Stephanie and I are going to go see a movie. We wanted to see PS I Love You but it's no longer showing so I think we may see 27 Dresses.

The boys want to stay home and be boys!

This weekend is going to be all about Michael and Stephanie since they are packing up a U-Haul and moving to Florida. We are going to be sure to enjoy our time with them and all do some really fun things, at least that is our hope! They leave Monday morning.

I truly hope each and every one of you also have a tremendous weekend!

Thanks for visiting...keep an eye out for some new pictures!

Denise

Thursday, January 31, 2008 10:01 PM CST

Good evening...

Kyle and I are supposed to be doing homework right now however, I am getting frustrated. We have a difference of opinion on how this reading "illustrator" assingment should be done so therefore I cannot help him. He is supposed to be reading but he is getting mad at me now!

I have a huge frustration with homework and school these days. These children go to school all day long and then come home and spend another hour or two doing homework. I am trying to make dinner, have the children get clean, in their pjs and read on top of the abundance of homework they have. It's just crazy to me!

Everything is going well here, we've just been super busy!

Have to run...more homework to do!

Denise

Tuesday, January 29, 2008 10:04 AM CST

Good morning...

This week has been rather busy but nice so far. Stephanie and Michael have been staying here this week (great friends of mine, she's like my little sister that I never had but always really wanted). Yesterday, Michael worked on fixing Riley's computer for her. Stephanie and I cleaned out Riley's room while she was at school, we were able to get rid of all her clothes that were too small, stained or what we simply disliked. Her room looks great as does Kyle's. We are all terrified of Tyler's room! That may be on our list today.

I am trying to go through each room of the house so that we can get a photographer in here to take photos and a virtual tour for the sale. I also need to rent a storage unit and haul many things over to it. That's on my list as well this week.

Kyle is doing very well. He is just growing up so fast, as are all the kiddos. He has been doing his homework on his own each night and that is a HUGE step. We are also helping him work on his science fair project.

Not too much else to report. We are still praying for Matthew (link below). He had his transplant last week and is doing well so far. This is great news!!! If you haven't picked up one of their wonderful cookbooks, you really should. I can't say enough great things about how awesome they are!

Thanks for checking in with the Lindgren crew!

Denise

Sunday, January 27, 2008 9:43 PM

Kyle is doing very well and had a good weekend. Nothing much to report other than thank you for the emails and guestbook entries filled with love and support. Each and every one of you keep me going and I thank you for this!

Hugs,
Denise

Friday, January 25, 2008 12:06 AM CST

I have been in a serious funk all week long. Yesterday, was as bad as it gets and last night I had to have a mental talk with myself. I need to get out of it and I need to do something to encourage that. My ex and I signed the listing agreement to put the house back on the market soon. I have no idea where the kids, animals and I are going which creates a whole new sense of fear but I know I can do this, I've gotten through more trying times in my life right? One foot in front of the other!

This morning, I went to the gym again. Not sure if I mentioned it before but my right shoulder is terribly sore and throbs the majority of the day and night, and has for over a month, it keeps me awake some nights. However, I sucked it up and went (probably popping some Advil later)!

I am going back to church this weekend, even if I have to go alone! I am going! And I will continue on my gym schedule. I noticed if I'm not working out as much, my water intake is terrible...thus a whole new set of issues for me!

I then woke up and had a call from Stephanie, which lifted my spirits. And a wonderful email from someone about Kyle. This totally made my day. Remember last year, someone in Boulder shaved their head in honor of Kyle through the St. Bladricks Foundation? This email made mention that she is going to shave her head in honor of Kyle. I went to the website and quickly discovered that another young gal in Boulder is also shaving her head in honor of Kyle...and THEN, I got home from the gym and yet another lady joined in shaving HER head for Kyle. My heart filled with joy and happiness...you ladies have totally made my day. I thank you for this, with all of my heart! And this year, I am taking Kyle to watch.

Going Bald In Honor of Kyle

Please donate to these wonderful and amazing people. They are doing this in honor of my brave son and our hero, Kyle!

On another note, Matthews bone marrow transplant started last night at 3 am. It is still transfusing however he is having some blood pressure issues. Please add him to your prayers. Nancy has some amazing photos on his webiste if you all want to click below to see them.

I also received their Never Give Up Cookbook, they are truly impressive. You must order one from Matthews site, the very last recipe is a Better Than Sex Cake...I think I will try that out this weekend (the cake that is)!

Thanks for stopping in for a visit...

Denise (recovering from a slight mental breakdown)

Wednesday, January 23, 2008 6:41 PM CST

All is good...!!! I can breathe again!

Thank you mom for bringing tons of delicious food to the inpatient families once again. What a great spread you create and I KNOW everyone appreciates you providing such great meals.

Kyle's appointment went great. He is up to 74 pounds now. I am so pleased at that number. I just had a flashback to when he was diagnosed, he weighed 26 pounds and had just turned 3 years old. We've come a long way baby!

His counts are listed above, not all of the counts were in by the time we left but enough of them were in to satisfy my anxiety.

Dr. Albano would like to continue to monitor his eye. She feels we should still hot compress it and if it doesn't improve by next month, we will send him to a pediatric eye doctor there at Children's.

Everything went smoothly and we then went to lunch. Kyle was in a terrific mood and now that my nerves are calm, I think I could take a nap. Inhale...exhale...very deeply!

Thank you all for the emails, texts, thoughts and prayers!

There is a disucssion on the leukmeia board about when a person is considered "cured". I asked Kyle's nurse at what point they consider someone cured. She said it is five years from the diagnosis ( 28 days to get into remission). There for in June, Kyle will be four years in remission with one more year to be considered "cured"! This was also nice to hear today!

I updated photos in the album and above. They are from today's appointment!

Thank you Rosemary for taking Riley today. That helps me out a great deal, I hate for her to miss school when she doesn't need to.

I did pick up a new humidifier for Kyle and his "yucky" nose, it's actually pretty nice as it has a Vicks pad in it (I love that smell)!

Here's to a good day and another month until his next appointment!

Hugs and love,

Denise

Tuesday, January 22, 2008 8:40 PM CST

Let the countdown begin...tomorrow's appointment is at 1:30 pm. Blood counts, height/weight/blood pressure, and a physical exam.

More, bloody noses from Kyle, I am less than thrilled! After school today I turned to look at him in the back seat of the truck and his color looked better. I forgot to pick up a new humidifier for his room today, his other one just quit working. I think we go through these at record pace.

Tonight, I am anxious and a bit sick about things...yes, very typical for the 24 hours prior to the appointment. What doesn't help is my heartbreak over Matthew and all that he is having to endure and go through once again. I thought our first relapse was difficult but all of my admiration is with Nancy right now (his link is below). Each day as I check on them, my heart sinks and my eyes fill with tears. I just don't understand, I don't get it!

This year hasn't started out with a "bang" as I had hoped but I can tell you that each day I am grateful for my children and my friendships, both of which keep me going each and every day!

Please pray for Matthew and his family as they are so close to transplant. Also pray for Kyle and great counts tomorrow..!

Thanks for stopping in!

Denise

Sunday, January 20, 2008 11:03 PM CST

Suddenly Sunday...that's how I feel right now. I can't believe that it's already Sunday night and I need to update.

Once again, Kyle and Riley were with Ed for visitation this weekend. He took them two weekends in a row as he will be going to India the end of the week.

I missed the children today and was glad to have them home. The house just doesn't feel like a home without my kiddo's here.

I did spend the weekend in downtown Denver with some friends. We spent the weekend at the Hyatt and had a great time together. We enjoyed meals, adult beverages and attended a boat show both days. It's always nice to get away for a bit so thank you guys (you know who you are)!

The children are home tomorrow. I don't really think we have a game plan for the day. Usually when they have been gone for the weekend, they like to be home and doing their own things, I don't blame them.

Kyle has his appointment Wednesday afternoon. This will be counts, height/weight/blood pressure, and a physical. This will be his 10 month off therapy appointment. I think his eye is looking better. The scaly parts are coming off and I believe it's starting to heal.

I hope you all had a great weekend as well and please do not forget to visit Matthews site below. He is getting ready for his bone marrow transplant and his family has a few fundraisers going to help with expenses. One of the current ones includes the sale of cookbooks with over 200 great recipes. His site is below!

Much love and hugs...

Denise

Wednesday, January 16, 2008 11:27 AM CST

OK Kim, I am working on updating the page, even though I HATE when holidays or special days are weeks away and everyone jumps on the decorations...this one is for you babe!

Morning update:

Things have been going well here. I have been rather tired and dragging this week. Maybe having a lot on my plate and spreading myself too thin is the culprit? I want to sleep but my mind just *races* and doesn't allow me to. Last night was a tough one. I wanted to sleep early but I tossed and turned until midnight and was back up a few times. I eventually woke up around 5:30 am.

Kyle has been doing pretty well. I am having a week of concern, just when I was saying my concern for him usually doesn't stick with me very long. He has several bruises on his knees, looks pale with dark circles. When I noticed the bruises and tried to brush it all off, I turned around and he had a crinkled up tissue with dried blood on it laying on his table in his room. Grrrr! Yes, mom keeps telling me he is just experiencing boy stuff but I don't like it.

His eye is sort of healing I suppose. It is a hard, red lump and it's scaly looking. He says it itches pretty bad. I will see what his oncologist says about that. I am also thinking about counts next week. I usually stress 24 hours prior but I guess this time it will be a full week.

I think my mental state is requiring me to need a vacation. I do have an airline credit with Frontier...wonder where I should go to escape my life?! I may have a mental break down in the near future! I have pressure to get this house back on the market and it's far from ready for that and I'm not quite ready to endure all that it requires. Ty's attitude has been much better but his grades have not, I have many appointments to get scheduled for the children and myself, and I have 18 messages sitting on my voicemail that I do not want to go through.

I suppose I should get moving and stop complaining...I'm sorry if I sound like a basket case, I kind of am!

Please continue to pray for myself and the kids!

Denise

Sunday, January 13, 2008 10:21 PM CST

I find it difficult to update when Kyle and Riley have spent the weekend with their father. I picked them up at about 7:30 pm tonight and they greeted me with hugs. I sure did miss them this weekend.

I am quite certain I will have more to share tomorrow. I had a great weekend and am rather exhausted myself.

I hope you all had a tremendous weekend!

Denise

Wednesday, January 9, 2008 10:34 PM CST

Kyle is doing very well today. His next appointment is coming up on the 23rd. This will be his 10 months off therapy appointment. It will be the standard height, weight blood pressure check. He will have blood drawn for his blood counts and a physical exam by Dr. Albano. We are approaching that one year off therapy appointment, and just typing that made my heart skip a beat and my tummy take a big churn.

His eye from the surgery is so-so. The scab fell off but the lump is still red, only now it's hard. Hmpf! Since we aren't taking him back to the same eye surgeon (by unanimous vote of course), I will have his oncologist take a quick peek at it and get her input. I forgot I also need to schedule an appointment with the dermatologist so that we can map and keep track of the moles on his back.

The children have actually jumped back into the routine of school quite nicely. I haven't heard any complaints so far. Ty has a few schedule changes to make and believe it or not, I am pushing him to get his drivers permit. I never thought I would see that day but he is just not motivated to get his license.

The house is going back on the market next week, this will give me tons to do the next few days. The photographer is scheduled to come in on Friday. You should see my house, the North Pole has exploded in my basement, Toys R Us exploded in Rileys room, Best Buy attacked the boys rooms, and Petco has bombarded the laundry room and house. I think I have some work ahead of me.

Riley and I are watching some Animal Planet show that is requiring my attention, Dolphins are saving a family from a shark attack. It's actually kind of neat so that is it for tonight!

Pleasant dreams, sleep well...

Denise

Monday, January 7, 2008 10:25 PM CST

Tonight is the night, school starts back up tomorrow (can you all sense how sad I am?)! Children showered...check. Children in PJ's...check. Children brush teeth...check. Children pick out what they are wearing for school tomorrow...check. Children tucked in...check!

All set to go, however tomorrow morning is most likely to be total and complete chaos around here. Nobody will want to wake up (including me) and nobody will want to go school. I will threaten them as I often do with, "guess you are going in your pajamas because you ARE going. Hope you like what you have on!" LOL!

I will then come home, enjoy a nice cup of coffee with my favorite coffeemate creamer, and catch up on emails and phone messages. And by the way, have I ever warned any of you to never call my home number or leave a message on it? I finally checked my phone messages today and had 19. Guess the best way to reach me is my cell phone! Sorry if you are on my voicemail, I heard that I had 19 messages and hung up the phone without retrieving them. I thought about changing my message to warn callers not to leave a message however right now it has Riley's cute little voice recorded. I've also contemplated getting rid of the home line however our internet is currently through our phone service.

Things were quiet around here today. Kyle is doing really well still. I often wonder if the "fear" that lingers within me will ever fully leave but I am starting to understand that it will probably always be hidden in me somewhere. I am guessing it will probably subside a bit as more time passes but it will always be there lurking and waiting to rear it's ugly little head. I am glad that I do not spend my days worrying about a second relapse. The thought will occasionally pop into my head for a mere moment and then it's gone almost as quickly. It doesn't happen every day but it happens often enough that it bothers me at times. Guess it's part of the cancer world but I feel I do the best I can to not let it get me down, after all, I still have Kyle to hold, hug, and kiss! My favorite part of every day is tucking his cute little body into bed, kissing his warm forehead goodnight, and whispering "I love you, see you tomorrow!"

I realize I have so much to be thankful for...like thank goodness it's a new year because last year wasn't one of the finest for me or my family. It was rather trying and difficult to be more precise, I think we are due for an incredible year...I can just feel it!

Thank you again for your continued love, support and prayers! We have so much to be thankful for andt here isn't a day that goes by that I don't realize that.

Hugs,

Denise

Sunday, January 6, 2008 9:54 PM CST

I hope you had a tremendous weekend. It is Sunday night and I am watching "junk" television, doing laundry, and thinking about all of the things I should have been doing this weekend but did not seem to accomplish.

Stephanie came over today to help me take down Christmas lights and we then had a nice lunch together at a local Mexican restaurant. I was glad to hear that she too still feels ill from our girls night out. I thought it was just me but I am still recovering from whatever it was that was given to me. I feel overly tired still, like I can't get enough sleep and still have some abdominal pain.

The children have been awesome this weekend. Kyle's cold has seemed to pass as I spend most of the weekend juicing kiwis and oranges for him to drink. I had that juicer hidden once the house had gone on the market but am glad we have rediscovered it again, it's a great thing to have when you want "something" but don't know what.

The kids are all home one more day and then they return to school. I think I have forgotten their schedule and find myself thinking it is going to be a struggle in the Lindgren home on Tuesday morning. Anybody want to switch places with me????

I want to remind everyone that the Never Give Up cookbooks are done and ready to be shipped out. If you haven't ordered one, Matthew's link is below. All money raised is going toward the expense of his transplant at the end of the month. If you haven't checked on him recently, Nancy has put some new pictures up and is sharing their journey with everyone. It breaks my heart, she is my hero and their family is amazing.

With that, I am going to watch some "junk" television with Ty for a bit. Have a great night and thanks for visiting! Your thoughts and prayers mean the world to me and my family!

Hugs and much love,

Denise

Saturday, January 5, 2008 2:32 PM CST

What a beautiful and sunny day here in Colorado! I think it's the calm before the storm as I hear more snow is on the way. Just in time as the last remaining bits are just melting away. The filthy truck, puddles of dirty water, and the appearance of Christmas decorations that were once buried are reappearing today. I think it's time to work on the outside of the house getting them put away.

Kyle is doing well. His cold seems to be clearning up nicely. The scab from his eye surgery fell off the other day and that too is healing great.

He has been spending time with a friend from school. I told him to have Justin come over today as Kyle tends to be invading their home but no signs of him yet.

The children are gearing up for school to start back up and I too am mentally preparing to get my life back in order as well, whatever the heck that might mean!

Yesterday, my mom took the kids and I to see Golden Compass. That was a weird one and I'm not certain if I liked it or not. My sweet pal Kim went to see PS I Love You and said it was awesome but bring a box of Kleenex.

I hope your day is filled with lots of sunshine and love!

Thanks again for stopping in...

Denise

Thursday, January 3, 2008 7:45 PM CST

Good evening...

So tonight, I am still run down and tired. I went to bed at 9:30 last night and slept until 8:30 this morning. I have not gotten out of my PJ's yet today and I am ready for bed already. I did manage to get the Christmas tree torn down and almost all the way to the basement.

I can't figure out why I am rundown but may have an idea why. I wasn't going to post anything about this but figured I would do every one of you a disservice if I didn't so here goes...

Last Friday night, Ed had the children for visitation, I went out on a girls night with some of my gal pals. A new bar and restaurant opened up last summer that I had not been to. We enjoyed dinner but felt uncomfortable from the moment we stepped in there, can you all say "meat market"?

I had a few glasses of Chardonney with dinner and the crowd began to pick up around 10. Everyone was mingling and dancing, we were having a pretty good time.

While I was talking, a glass of Chardonney was handed to me over my back. I continued talking while accepting the drink. I didn't get half of the glass down when I suddenly felt *weird*. My friend took the glass from me and started drinking it as well. The last words I remember hearing was someone asking me if I was OK. I only recall throwing up outside and the rest is history...totally "blacked out!" not a memory to share.

The next morning I woke up and felt like some had smashed my head against the wall repeatedly and immediately began vomiting. With Stephanie passed out next to me, I was told she too had become ill. I suddenly realized that I was drugged (aka "rufied").

I spent the morning violently ill and hallucinating. At one point, I recall wanting to go to the hospital and get hooked up to an IV. I was miserable and scared as I had no control over my emotions and what was going on. My friends were shocked that I hadn't recalled a single thing that I said or did after I drank that wine. It was very scary and I can't understand for the life of me why someone would do this to another. OK, I know the whole purpose thing as I am not that dumb but what a horrible thing to do to someone.

Needless to say, I was very ill to New Years Eve and still feel a bit off today.

Lesson learned, NEVER accept drinks from stangers and NEVER leave your drink unattended. I know things could have turned out so much worse and am thankful I was actually just sick from it. The stories continue to pour in on how this has happened to others and I guess I was naive on the whole concept until Saturday morning. I have learned my lesson and want to share it with all of you. I can't believe how scary a simple night out with my friends can actually be. I was almost embarassed to share it but today I felt like I would be doing you a disservice if I didn't. Please be careful...

With that, I am going to settle in and watch some television with the children. They are all doing well today, Kyle's cold is slowly going away!

Thanks for checking in...

Denise

Wednesday, January 2, 2008 3:18 PM CST

Today I am working on taking down all signs of the holidays and eagerly preparing for the New Year. Ha, how funny is that...I am not eagerly preparing, I have not taken a shower, I'm tired, I'm in sweatpants and a oversized Leukemia and Lymphoma Society t-shirt with glasses still upon my face! Does that sound eager?

Kyle started getting ill last Friday and went with his father until last night. He and Riley spent 4 nights over there and it was nice to get them back. Kyle feels a bit ill still and I'm hoping he shakes whatever it is soon. I am shoving Triaminic down his throat along with Airborne pixie sticks.

Riley is in her room playing quietly with her many Christmas gifts. I get the occasional request for help with something that I find myself saying, "just a minute" to and never making it up to help her. Apparently she either figures it out or moves on to the next thing.

Ty is hibernating in his room as usual. I am beginning to worry about his addiction to those darn online computer games.

Me...I'm doing laundry, attempting to clean from the holidays, and still pondering resolutions. I typically do not stick to them and therefore rarely make them. I haven't decided if I should bother or not. I know it's Day 2 however I didn't do much yesterday or today that would most likely affect resolutions I may or may not make.

I am just grateful it's a new year and that *new beginnings* feeling fills me with hope and faith for the upcoming 363 days of the year. I look forward to what the future might hold for myself and my children. I am a true believer in one day at a time and know that trying to predict or plan what "may or may not" happen is totally and completely unreasonable. I think with that being said, I will sit back and enjoy the ride. I am anxious to see what He has in store of us this year as it is my hope that is only great things! I hope for continued good health for us, many great friendships (new and old alike), the possiblity of finding love, the hope for the finances to provide for myself and my children, the desire to improve in all areas of my life after all we all have room for improvement right?

I certainly know not to make any silly resolutions like giving up Starbucks, going to the gym every day, or to stop eating red meat. I won't even count on attending church every Sunday or do a better job budgeting. Honestly, we all know how those types of resolutions go.

I think I will just keep it simple and vague, I have a better chance of succeeding that way!

Happy New Years...!

Denise

Tuesday, January 1, 2008 2:01 PM CST

HAPPY NEW YEAR TO EACH AND EVERY ONE OF YOU!

I look forward to this new year with great hope and anticipation. I pray for continued remission for Kyle this year and thank the Lord for all that He has given me.

2007 was a very difficult and trying year for myself. I experienced many ups and downs, trials and tribulations but move forward with strength and determination. I welcome 2008 with open arms!

May all of your dreams come true this year and thank you for continuing to follow Kyle's story, our journey!

Denise and gang

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