History

Friday, July 31, 2009 9:43 AM CDT

Finally I figured out how to update Zachary's website!! Yeah. Zachary would be turning 17 years old tomorrow. Can you believe it!? So much to update everyone on. Last night every time I went to sleep I started dreaming - I could hear Zachary's slippers shuffling behind me and I didn't want to look because I knew he wouldn't be there - only this time he was. He kept hugging me and telling me how much he loved me. His head would lay against my chest and I was just holding him and so relieved that he was alive again. Then all of a sudden he turned to dust. I kept waking up in tears - how awesome would that be that my son was alive again. He always told me that he would talk to me in my dreams - only with me being pregnant and full of emotions it made me cry all night. And, after 3 times I was afraid to go back to sleep.

Zachary's 17th Birthday tomorrow - boy does that make me feel so old!! LOL Such a handsome young man he would be with such a giving heart.

Well, we're having another bundle of joy October 26, 2009! And it's a girl!! I know - poor John, he will be living in a household full of girls!! Here's a recent pic of Chelsea - she's 15 months old on August 2nd. http://nikkileman.typepad.com/my_weblog/2009/07/i-had-to-share-.html What a cutie!! Such a joy!

Well, I go today to have another sono to make sure the little girl (her name is going to be Emma Grace). We're going to the cemetary tomorrow afternoon and then to go eat BBQ for Zachary's birthday. The whole family will be going - if you would like to join us just call and you are more than welcome! 347-3625

Happy Birthday Zachary!!!!!!! LOVE YOU MY SON! Miss you bunches! I'm so glad you're all better now - cancer free. I'm just upset that I'm not able to see you right now - without any worries. Your smile was so big here - I just can'nt imagine how big Your smile is now!! What a Beautiful sight that is going to be!!

Love - Your mom

Wednesday, March 18, 2009 9:58 AM CDT

It's about time I updated Zachary's site :-)
I've been so busy! Chelsea is getting so big. She weights 25 lbs. and is always smiling. What a joy to have 2 beautiful daughters. Zachary would be so proud. I'm sure he's smiling. I can't believe that it is going to be 3 years since I've held my son. He loved to snuggle -

Well, I've got awesome news. John and I seen the new baby's heart beat on the sonogram yesterday :-) Yep, we're having another bundle of joy. We actually started trying - we wanted Chelsea to have a sibling close in age. John has several siblings and he said that the ones that are very close in age are very close. I had a dream that we had a little boy. I know - as long as it's healthy - but, secretly I really want a boy as I'm sure John feels the same way. The due date is November 10th.

Zachary was awesome at all his roles in life - as I'm sure that being a big brother to so many siblings - he would be perfect. He set so many examples in the way he lived his life everyday - I learned so much from him. I'll make sure to share that with his sisters/brother. Zachary will still be making a difference.

Love you Zachary!

Thanks for stopping by.

Nikki

Tuesday, February 10, 2009 8:43 AM CST

My dear Zachary,
I visited Great Grandma yesterday - she had papers that you made her when you were little. She gave me those and there were pictures of you that I had never seen. She gave me those too. One of them was right after you were born. I was holding you and looking into your eyes - instant love. My first born - you can tell as I looked into those eyes I knew that you were an awesome gift from God.

Today is Chelsea's 9 month check-up. I bet she weights 25 lbs. She is just so big and getting to be such a goofball. She makes funny faces all the time.

Some of those pictures had Kylee in them. You would be so amazed at how much she has grown up since you left. She will be 14 in a couple of months. So grown up and very pretty. I'm very proud of her Zachary as I'm sure you would be too. She is getting all A's and B's!! I know . . . very impressive!

It's almost Valentines Day. Remember you Valentine Parties you had - - - I was just looking at some pictures from the one in 2000. You had so much fun with all your friends. They look so young! Kayla & Kris, Chad - so cute and little :-)

Love you Zachary and think of you Always!!

Mom

Saturday, January 10, 2009 9:19 PM CST

I can't believe it's been almost a month since I've updated. . .
Tonight we got together with my parents and siblings for my dad's birthday. Zachary was so much like his grandpa - they both loved fishing together. Zachary even walked like his grandpa and had a gentle heart like his grandpa.

I don't know if you've ever visited my blog ( www.nikkileman.typepad.com ) - but, I have pictures of Kylee and Chelsea on there. I use it for my Stampin' Up! Business - but, I will once in a while have an update of the family. I like this website to be exclusively for Zachary and to reflect on what a difference he made in my life and this family. Chelsea of course was born after Zachary had already passed - but, she talks to his pictures with smiles - I mean really talks to the pictures like she knows him. When she gets older I'm sure I'll be showing her videos of her big bubby - and how much love he had and how Zachary got her mommy and daddy together. That was Zachary - making sure that his mommy and sister were taken care of. What can I say - just thinking of him puts a smile on my face. I can close my eyes and remember what joy I had just watching him - listening to his stories - such great joy. Other things bring me joy now like watching Chelsea grow and change. There is that particular joy that is forever gone though - a parent longs for that - until they are met up again in heaven. I just had 13 short years with Zachary - but, they were life changing years. I love you Zachary -

Mommy misses you and thinks of you always -

Tuesday, December 16, 2008 1:03 PM CST

I can not believe that this is Zachary's 3rd Christmas with Jesus. Can you believe it? I can not get over the fact that he would be 16 - I would be worrying about him driving in the snow. I haven't seen his friends for a while - I miss that. Some days it seems so long ago and others just yesterday. Every day it's a choice we have to make to Live our life. When I started thinking of it as Zachary as a chapter in my life and there are many more chapters to be lived - it doesn't make missing Zachary easier - I just want to make Zachary proud and by doing that I live my life by using the lessons he taught me everyday while he was still alive. God blessed me so much by being Zachary's mom - and now I have knowledge that Zachary shared with me - and now it's my turn to live out my purpose in life. I want to know how Zachary did that. I guess I'll have to wait until I see him again to get that insight :-) LOL

Chelsea's first Christmas . . . John and I took Kylee and Chelsea to see Santa and we had their pictures taken. Now I have to finish the cards and get them sent out. I just need to address them. I've been so busy with my Stampin' Up! business. It has been so much fun - I've made so many awesome friends doing it.

We are actually looking forward to Christmas this year.

We just found out about one of Zachary's friend - Chad - his mom passed away - his dad passed away in May 2007. We are asking that you pray for Chad and his family. We are just heart broken that Chad is having to endure all of this.

Love and miss you Zachary! xoxoxoxo

Mom

Thursday, November 13, 2008 2:19 PM CST

Wow, I can't believe Christmas is not that far away. I'm actually looking forward to Christmas this year. Having a little one - it just does that to Christmas. Chelsea is getting sooooo big. She went in for her 6 month check-up - 20 lbs.!! Can you believe that - Zachary was very close to that. She is always smiling - she brings a lot of joy here for Kylee, John and myself. What an awesome gift from God.

Well, talking about Christmas - I have 2 extremes for Christmas presents. Teenager - extremely HARD to buy for and Baby - extra easy peasy to buy for. Kylee - well, she doesn't like any of the clothes I pick out for her - nothing . . . shoes, jewelry - NOTHING. I am just at a loss as to what to get her that would make this an awesome Christmas for her. Now Chelsea, well anything puts a smile on her face.

Zachary - well, he was boy - so much easier to buy for - he liked all the clothes I picked out for him. (of course, he always commented how I dressed him like a momma's boy) :-) That still puts a smile on my face just thinking of all the little things he would say.

Now that Chelsea is doing some "Firsts" it takes me back to Zachary and Kylee's "Firsts". Zachary used to call popcorn "notnorn". hilarious!! I can just see him toddling around asking for notnorn. Of course those smiles will quickly turn into tears most of the time because I truly MISS those times with him.

LOVE and MISS you Zachary!!

Mom

Monday, October 27, 2008 10:17 AM CDT

Halloween in just a few days . . .

Chelsea's First! Kylee wants to dress up and push her in a stroller - so it's going to be a family affair to go Trick or Treating. Daddy doesn't want to miss anything. He's just the proudest daddy - he loves his girls so much. We went to Tanner's last weekend and picked out a pumpkin. John picked up a book of templates to carve the pumpkin with all kinds of tools. The last time we did any of that was with Zachary (Oct. 2005). Zachary loved roasting the pumpkin seeds - it's a tradition we are going to keep. Kylee picked out a deformed looking pumpkin on purpose (she said they have more seeds):-)

Speaking of Tanner's - of course Zachary never let us leave without their donuts - they were gone 24 hours! And it was only 3 of us eating them . . . Jonathon!!?? Just kidding :-)

You should see the pictures from there - Zachary decided to show up in almost every single one!! AMAZING PICS - my friends couldn't believe them. When I originally looked at them in the camera after taking them I thought it was just a few - but after downloading them on my computer - the same orbs were in almost all of them!!

Have a Happy Halloween!!

Nikki - Love and miss you Zachary !! Mom

Monday, October 13, 2008 9:54 AM CDT

What a wierd Monday morning - you name it - it happened :-) Just kidding . . .

Well, I had one AWESOME dream Saturday night!! Thank you my Zachary. Before Zachary died - Zach and I were in his room and I was lying next to him as he was sharing some things with me. He expressed some things that was on his mind. It always amazed me when listening to Zachary how his focus was always the other person - not himself. This conversation we had he told me that he would come to me in my dreams when he knew I would be missing him. Lately I've been reminding him of that conversation and wondering when it was going to happen.

He came to me in my dreams - as I had my arms open to hug him. It was so real! As I hugged him I smelled his hair - I felt his face on mine (he had the softest skin!) - I just kept hugging him and telling him how much mommy loved him and missed him and made him promise me not to leave me. Then John woke me up - Chelsea was crying - and I totally jumped his case because my dream was so real and I did not want to wake up!

Thanks Zachary - mommy needed that dream sooooo bad - now if you could just do that every night.

Mom :-) LOVE YOU!!!

Friday, September 26, 2008 1:42 AM CDT

So, a month has passed by without an update. . .

Usually, when it's been awhile that means that I'm having an extremly hard time without my Zachary.

I'm not sure what it is - I'm struggling with post partum depression and the fact that Zachary would be 16 - which makes that the 3 Birthday that I've missed out on. I know - 16 years you would think that I wouldn't be able to recall all the little details of when he was a baby. I remember everything. A mom knows that if she takes good care of her child and gives it love, a loving home, she'll be able to grow old and have that child take care of her when she's old. I can still hear Zachary tell me that one day when I'm old that he will push me around in a wheel chair instead of me pushing him around in one. He promised he'd grow old.

Now, I see all of Zachary's friends getting so big, so grown up - and all I'm left with is a mental picture of Zachary FOREVER 13. So not fair!!!!

Because I took care of him. I seeked out the best care for him. I researched with every extra time I had to find a cure for him. I LOVED him with my whole heart. I gave him all I had. I spent my time on him to get him better to show him love, to cram as many happy memories in with him that I could. Yet, I failed ---

Do you know how many waking hours I spend thinking of what I did wrong? In everything I do - that is what I'm thinking about in the back of my mind. Zachary is forever gone and I should of done something different - I prayed to God all the time to put us in the path to find that cure for Zachary. I didn't want him to die to get healed - he was suppose to be healed here on earth.

MISSING MY ZACHARY

LOVE YOU ZACHARY - MOMMY LOVES YOU - MISSES YOU - WILL NEVER FORGET YOU - I'M SO SO SORRY I DIDN'T FIND THAT CURE! XOXOXOX

Tuesday, August 19, 2008 10:49 AM CDT

My Dear Zachary,

Your sister Kylee is ready to start 7th grade. She's scared to start Junior High. I know if you were here you'd probably just make her more scared by telling her stories :-) Brother and sister love - that's something I miss big time. I never hear arguing - pounding on each other's door - hitting - I never imagined that it would be something that I would long to hear. Of course if I wait a few years I will be hearing sisterly love :-) Probably sooner than that :-0!

While I was at SU convention a young man (16 yrs. old) came up to me and asked me if I wanted to swap cards with a huge smile on his face. I looked at him - smiled and asked if he made all those cards himself. He said oh no, I help my mom make them. I love helping my mom make the cards and help swap them for her. Tears flowed down my cheeks so fast . . . I knew that it would be something that you would be doing. You LOVED doing that kind of stuff with me. You were such the sales person. You would be such a great help to me right now.

Now you're a huge help - just in a different way. You had no fears (God took care of that) you loved people, you always smiled, you showed so much care in everything you did. I now live out your examples. I love you so. Missing you soooo much. I think of you every second. I still tell Zachary stories ALL the time. All the time! I'm sure my friends wish they could just walk away and have ear plugs to wear and just pretend that they are listening. All well, you're my son and there is nothing I wish to share more than the valuable lessons my son taught me every day of his life.

LOVE you my Zachary!

Mom

Saturday, July 26, 2008 0:25 AM CDT

August 1st is Zachary's Birthday!!!!

Can you believe it ?!?! He would be turning Sweet 16! We would be driving - we would be dumping money into an antique car - pimpin it all out - He was having us stop at dealerships on trips back and forth to Memphis. So, I know for sure that he would be driving! I would always tease him and tell him that I would have the laws changed by then that he would have to wait till he was 21 to drive. Too funny . . . .. .

Just thinking of those days and seeing that smile on his face as he would lean into the cars and look at them - I could actually see his mind working and him thinking of all the possibilities. He wasn't an ordinary kid - so an ordinary car just wasn't fit for my Zachary. :-)

For now until I meet you up in heaven - mommy has to settle for those memories of you driving me around in your go-cart that you got on your 13th birthday. Love you my son - my Zachary - my Birthday Boy - it seems like yesterday that you were born - but yet a life time ago that I held you. I just can't believe it - sweet 16 . . .

I'm always wondering what you would look like -

I love you. Mommy is spending your birthday in Utah - Salt Lake City with some girlfriends at the SU Convention. I think maybe it may be good for me to be away - as the last 2 of your birthdays have been such bad days for me. I'm making some birthday cards to swap to honor you my son. I love you so! Waiting till that day we meet again in heaven - hopefully very soon! Birthday Boy!!!

Mom

Thursday, July 17, 2008 10:33 PM CDT

Well, Marilyn - I have been thinking of Aaron alot - knowing that he just turned 10! I also LOVED the poem!

I said "God I hurt." and God said "I know" I said "I cry a lot" and God said "that's why I gave you tears." I said "Life is so hard" and God said "That's why I gave you loved ones" I said "But my loved one died" and God said "So did mine" I said "It is such an unbearable loss" and God said "I saw mine nailed to the cross" I said "but your Son lives" and God said "so does yours" I said "Where is he now?" and God said "My Son is by My side and your angel is in my arms."

Whoever wrote this - thank you so much! If I just kept this way of thinking I think it could be more bearable than what it is. Living your life without your child - it's just so hard . . .

Love you Zachary!!!

Mom

Monday, July 14, 2008 12:14 AM CDT

Well Zachary, I'm having a much better day. I'm still missing you - but, I bought a vinyl decor. it says LIVE Every Moment - that is a lesson that you taught me. Seeing that every day will remind me to LIVE every moment with Kylee and you little sister Chelsea. John is trying so hard to fill that void. I love him so - it's just not my son.

I watched the video of us going to one of your favorite places to eat (Johnny's) lunch - you told me that normal moms only video tape special occasions - I told you that is was a special occasion - I'm having lunch with my son. Indeed - watching that video and listening to me laugh and giggle watching you be a goofball says it all - I was so happy. I'm so happy that I video taped that day - just a normal day after St. Jude visit - just you and me - hanging out -

Love you bunches Zachary. Chelsea is such a cutie! She looks at your pictures all the time. She even talk to you (in her own little way). Kylee is going to youth group. Can you believe it? She is old enough to be in a youth group. She getting so grown up.

Live Every Moment - thanks Zachary for such a valuable lesson in life.

Mom

Tuesday, July 8, 2008 11:06 AM CDT

I'm needing to talk to Zachary - so, my journal today is a one way conversation with my Zachary . . .

Well Zachary . . . mommy can not believe that you would soon be turning Sweet 16! We would be fixing up an antique car - pimpin it out just for you! Just picturing that awesome smile you had and your way of appreciating the things people do for you . . . breath taking.

I remember stopping at all those dealerships that had antique cars . . . I miss that! In fact, all night I was laying awake missing you. Some nights - I'm haunted by your last night and wish I could have another chance and would of done things differently. I wonder if I'm the only parent that beats themselves up and wish their last night with their child was done differently. I wish I could have just one more chance - and if you were here would be not be so happy with me. I'm sorry I still cry - I want to be able to handle it and just cope but, some days that is just impossible.

I don't know what it was about our relationship as mother and son - but, I feel as though I lost my bestest friend ever and that part of me is forever gone because no one ever will ever be that close and know me that well. Oh Zachary, I knew you were sick but, never did I ever really think that you would be taking your last breath and I would never be able to hold you again. That is something that was too hard to try and picture - impossible in fact. You were part of my every second that I could just not fathom the thought of you being gone forever. They kept tell me that you were dying and I could just never come to grips with that. I could never wrap my mind around that ---- I still can't. I have your shoes in the front closet, your jackets waiting for you. Of course by now your shoes are shoved all the way back to the corner of the closet because, well they're not being used. I know you're dead - you're not coming back that is just wishful thinking on my part - but, hey can't a mom just have one thing to look forward to. I actually look forward to that - I try and invision you walking through that door - ohhhhh what an awesome day that would be!!!! Just one more minute with my son - that would be so amazing -

I love you so much and looking forward to the second I meet up with you in heaven. Mom

Monday, June 30, 2008 3:14 PM CDT

Only 4 more days to one of Zachary's favorite holidays - the 4th of July. He LOVED those fireworks. I can only imagine what kind of firework show he gets in heaven! Only - his favorite thing to do was lighting them off himself - - - I hated it :-) I really didn't like the thought of him lighting them off - but, with my dad and brother right there helping him I was ok with it. Zachary loved it - and that is the only thing that changed my mind. Seeing that smile on his face - priceless!!!!

Those memories will forever be with me. Just picuring him on the 4th and all the fun family get togethers we had.

One of them we celebrated with our extended family in the country. Zachare decided to get on a horse and go horse back riding - the horse started bucking and in slow mo Zachary dove off the horse - I still laugh seeing that picture in my mind:-) Too funny!

Chelsea's crying - hunger pains - Zachary was the same way when he was a baby.

Gotta go!

Mom - love you Zachary

7/3/08
Most of you know that the last couple of years I've been an at home mom after working at Cat for 8 years. I'm now working from home being a Stampin' Up! Demonstrator. I have a website now: www.nikkileman.stampinup.net - I am trying to get my business up and going. So far everything is going really good - I really enjoy it! Since Zachary past away - I really value the pictures - and scrapbooking is a way that I can bring those memories alive. - Nikki

Sunday, June 22, 2008 10:47 PM CDT

My Dear Zachary,
I've been missing you like crazy! We just got back from Blue Lake in MI. Kylee learned several new things playing her cello. (yes, Kylee still plays the cello Zach - after 8 years) I remember going to the orchestra concerts and I got to listen and watch both you and Kylee. There were only 2 other bass players this year at camp. So, you would of made three. Then there was a girl that played the violin from Wheaton, IL - which I was thinking of Tori and how you and her are probably playing together, laughing, smiling and all better. Driving home tonight - thinking of how you are going to be 16.

Well, I've come up with an awesome idea on my way home. I will be in Utah on your Birthday. I will be a my SU convention - and I am going to participate in a few swaps. I've decided to make birthday cards and with the card I'm going to insert a note of why I made the birthday cards and how you will be 16. I'm going to put your website on the note and see how many Birthday Wishes you will recieve!!

Something I can do to honor you and show you how much I love and miss you!!!!

Your little sisters are getting so big! Chelsea is starting to just look at your pictures on the wall and coo at them with a smile! It is just so cute. I can only imagine what you must be doing in her dreams. I told John that your probably doing your "I like big butts" dance! I can still hear you sing that song and shakin it!

Thanks for still putting a smile on my face! Only now - I have tears with my smiles. (sorry)

MOM

Tuesday, June 3, 2008 11:43 AM CDT

Well, Chelsea Adele was born May 2nd at 3:33 a.m. I was in labor from 6:00 a.m. 5/1 - 3:33 a.m. 5/2! Extra long!! Of course she is adorable, healthy and all we prayed for and more!! Here's a link to some pictures of our little bundle of joy:
http://www.our365.com/NewbornPortraits/BabyDetail.aspx?birthid=d36c3c91-7dff-45c2-be40-a7c436da3cef

Sorry for taking so long. Time Management - - - hmmmm, that brings on a whole new meaning with a newborn! :-) She crys more than Zach and Kylee - but, I have more patience now that I'm older. Zachary would hang on to my shirt when I would hold him as a baby - something Chelsea started as soon as she was born. I told Zachary the story of how he did that when he was a baby right before he went to heaven he climbed into my lap and looked up smiled and grabbed my shirt. I think it was his way of giving me that special memory with him. He was such an adorable baby and so laid back. A personality trait he kept for always :-) He always had a smile - I'm sure he that is what he's doing now.

May 26th the family got together and planted flowers by his grave. The little kids cleaned of his stone - polished it made it look real nice. Thanks Kayla for the balloons and angel - You have no idea what it means to me that he is still being remembered and thought of. Zach shared with me some fears he had about dieing - one of those was that he thought he was going to be forgotten. I looked at him with all the love beaming from my face and a huge smile - I SAID "IMPOSSIBLE! Dear Zachary - I will remember you and think of you every second of my day until I meet up with you again in heaven. You were one of God's greatest gifts to me and that - that I am forever thankful for. I will share you with everyone I come in contact with. LOVE YOU LOVE YOU!!" Of course I hugged and kissed him. He never out grew that.

Thanks for all the guestbook entries!!

Love you Zachary!

Mom

Wednesday, April 23, 2008 2:15 PM CDT

Zachary - It is so different without you here!

Your "little" sister - Kylee is turning 13 in a few days -an official teenager. It's hard to imagine that - that was how old you were when you went to heaven. It's even harder to imagine that you would be 16 August 1st! I can't believe that you would be driving soon!!! I do remember how you drove me around in your go-cart. I watch the videos of you from April '06 - it's hard for me to understand how what you were going through - at that time it was the "norm" for us. I am now realizing how God didn't want you to go through that any longer. It's just that I miss you so. How our "norms" have changed!

Well, you are soon going to have another little sister - May 1st at 6:00 a.m. mommy is going in to have Chelsea Adele - your soon to be little sister. We are very excited. (only I don't think you would like that your room is pink and is the nursery) - oh, and Kylee switched your cell phone to a pink one :-) I'm so sorry! To think that you've already met Chelsea - - - It's nice having you watch over us! I talk to you all the time - I like to think you hear me tell you I love you all the time! LOVE YOU LOVE YOU LOVE YOU!! John bought Chelsea a bib that says I love my Big Brother - oh and of course one that says I love my Big Sister.

Mom

Thursday, April 10, 2008 3:06 PM CDT

This time of the year since Zachary's death, is just full of all kinds of emotions. Spring used to be our favorite time of the year. We would decorate the house with all kinds of Spring decorations - just spending alot of time outside - enjoying family time with the warmer weather. Now, I didn't even bother decorating - for the 2nd year in a row. I know, next year with a new baby - I praying that it will help with everything.

I look at the pictures of Zachary - the pictures from Grand Bear Lodge - just 3 weeks before he died. He was so full of life - - - he fished, he went swimming - he rode rides - he played baseball - he drove his go-cart - he joked around with everyone - made everyone laugh all the time - and just a week later he told me that he would be going to heaven soon. A son that made my world so wonderful, so full of meaning, so full of smiles, so full of learning lessons, full of love every day, he made me look at life in a whole new way - - - someone I would turn to for everything - Zachary had a way of making everything ok for me - God gave him a gift - a gift of giving love to everyone he came in contact - a gift of understanding - a gift of laughter - a gift at always considering the others involved - he never looked at any one thing closed minded - he always opened my eyes - and no one else could ever get me to do that because I can be very closed minded sometimes - especially when I know I'm right ? :-)! I'm just really missing my Zachary and am in disbelief that it's been almost 2 years since of kissed my son and held him close.

I went shopping the other day and found a little baby bib that said "I love my Big Brother" - I put it down with tears coming down and left - I wish Chelsea would be able to get to know how wonderful her big bubby was - he was good at every role he had in life.

LOVE YOU LOVE YOU LOVE YOU MY ZACHARY!! Forever Zach's Mom

Thursday, March 20, 2008 12:49 AM CDT

I know, it's been too long between updates. Easter is in a few days. It really don't seem possible that this will be the 2nd Easter without my dear Zachary. It seems so wierd just getting one Easter basket . . . as John and I were shopping I looked up with a smile and said next year - next year we get to pick out 2 baskets. With the added bonus of buying little kiddie things again like bubbles, - just imagining next year Chelsea will be so much fun. Kylee is looking forward to having a new baby sister to play with. She kinda was wanting a brother - but, I think she realized that no one could ever replace Zachary. I always got Zach and Kylee kites in their baskets - we would always fly them on Easter. I got Kylee a tie died one.

There's a picture of Zachary from his last Easter here on this Earth. In "View Photos" the bottom one with several pictures - it's the one with him in a green recliner sitting up with a huge smile. That day he played baseball with the family. I have several pictures of that. Just a few weeks later he took his last breathe. He was on a mission enjoy LIFE - LIVE BIG! That he trully did. He also took me for a go-cart ride for about a hour. He had such a huge smile on his face - laughing and trying to scare me. That was his time - - - his time to enjoy his friends and family and cram everything he wanted to do. That was also the time he was coming to grips with the fact that he would be leaving us soon. He was always thinking of others and how would he be able to make it the easiest on everyone else. That's my son - never thinking of himself first. Maybe that is why God needed him in heaven. I don't know . . . .

But he will forever be missed and thought of every second of every day.

LOVE YOU MY DEAR ZACHARY!!!!

MOM

Tuesday, February 5, 2008 4:30 PM CST

Wow - I'm actually updating!! :-0

Zach and I participated in the Radiothon for St. Jude for at least 3 of the years. The last one was Feb. 2005. This year I volunteered to help answer phones and they asked if I would want to tell Zachary's story. I never pass up a chance to share my Zachary :-)!! So, this Friday, Feb. 8th 12:00 - 2:00 I will be answering phones and some where during that time frame I will share Zachary with everyone on 104.9. So, if you want to become a partner in HOPE for the kids of St. Jude . . . call in!!

I had another Dr.s appointment today. Everything is perfectly normal! I just thank God everytime I here those encouraging words - knowing that God is watching out for Chelsea and she will be perfectly healthy. We're looking forward to holding and seeing her :-) My Dr. appointments are every 2 wks. now. It's starting to seem real!

Thanks for everyone's continued support!

LOVE AND MISSING YOU MY ZACHARY !!! WE PICKED OUT A HUGE VALENTINE FOR YOU AND WE'RE GOING TO PUT IT OUT ON YOUR GRAVE. Thinking of you every second - do you hear me tell you that I love you ohhhh 1000's of times a day. I just wish I could hear you tell me just one more time. MOM

Wednesday, January 23, 2008 6:48 PM CST

I'm sorry for such a delay in updates.

Updating this site has become a very emotional task for me. I go through such a wide variety of feelings. I want to share Zachary with everyone yet - - - so I sit and think of memories and decide from that what I want to share. I'm coming to an understanding that Zach Stories - well, I don't have any new Zach Stories. It is such an overwhelming realization that Zachary is not coming back. I don't want to tell the same story over and over -

That day May 26, 2006 - that is the last time I was able to hear his precious voice - feel his touch - smell his hair - one moment I had Zachary - the next moment he quit breathing. My life with Zachary is forever gone. I don't have Zachary in my every moment life. It's too hard for me to come to grips yet - I don't understand it. My life - well, it came to an end that day as I once new it and now I'm having to redefine my life.

One way I'm so thankful that God has given me the gift of being pregnant. I'm so thankful for that. I know Zachary wants me to live life - "Live Big" like he used to tell me and set a good example for me.

But, Zachary will forever be missed so much - I could never explain. A HUGE part of my heart is missing - - -

We found out that We're having a girl. We had a 3D sono done - you could actually see what she looks like. She has dimples and everything. I'm due May 9th - We've picked out a name for her . . . Chelsea Adele

John and I and big sister Kylee are very excited and can't wait for her arrival. We've ordered furniture and picked out the decorations for her room. I'm praying that God will use this blessing to help all of us and healing our hearts.

LOVE YOU AND MISS YOU ZACHARY!!!

Mom

Tuesday, December 11, 2007 1:20 PM CST

It's hard to have the same motivation to update Zachary's page. The stories I have of Zachary - he will forever be a young boy in my memories. Extremely hard for me to come to grips with.

We all went to Disney World (all 16 of us) and had a really nice time. The night we went to Mickey's Very Merry Christmas Party - Zachary decided to show up in our pictures. Especially the one with Kylee and I in front of the castle - hugging. It was taken with the Disney photographers camera -

I'll have to post the picture of all the one's Zachary decided to join in. I left Magic Kingdom that night with a HUGE smile on my face.

I told John that it wasn't the same - and we should wait to come back until the baby is 3 or 4 yrs. old.

I heard the baby's heart beat yesterday. I'm 19 wks! We'll find out if it's a boy or girl next week. Then I get to decorate the nursery! I can't wait. I really can't wait till next Christmas. Having a little one just makes it that more magical on Christmas morning. I miss those feelings!!!!! Zachary and Kylee waking me up when it was still dark and ready to see if Santa came. Those smiles . . . . . . Zachary - when he was little he would open a package and yell out "It's always what I wanted!" and he would give the biggest hug with a smile that would melt my heart. Those moments - those simple moments are memories that I have forever -

Thanks for all your prayers and continued support.

Have a Merry Christmas!

Nikki, John and Kylee

LOVE and MISS YOU ZACHARY!!!!! - - - MOM

Sunday, November 4, 2007 8:37 PM CST

Only 20 days left before we leave for Disney World! Mixed feelings really. This will be a first without Zachary - wanting to relive those magical moments - but, don't know how it will be - happy, or mad because he's not there, or if I'll just cry because the feeling of Zachary not here will be so strong and real - - - praying that God will let "Zachary's Family Gathering" be one filled with good magical memories. All 16 of us are staying at Old Key West Resort - it's a Disney Magical Gathering. For half of the family this will be their first trip every to Disney. That will make it exciting.

Connor (Zach's cousin) just turned 4 yesterday. I watch him on Tuesday's and Thursday's - the other day I was sad and he asked me what's wrong. I told him that I was missing Zachary today. He looked out the window as we were driving to his favorite place to eat (McD's) and said I miss Zach everyday. The whole McyD's thing - Connor said - I really like eating there - they got apples with no skins :-) He reminds me of Zachary so much. :-)
Hates french fries - but goes for skinless apples :-) Normal kid ??? no - he's Connor.

Zachary had certain things he collected when shopping at Disney World. Smashed penny's, Disney trading pins - limited edition only (that is so Zach - always unique & more expensive), and character autographs. So, I will be continuing his collections - that way I feel like I'm putting a smile on his face. Doing something for Zachary always makes me feel good.

The other night I finally had a good dream of Zachary. It was like it was so real I was awake. He walked into my bedroom, cuddled up with me and said I love you mom. Something I've longed to hear since his last time he said I love you mom.

I thank God that he was still talking a few hours before he went to heaven. I thank God that he told me that he loved me and he always knew that I loved him with my whole heart. He quit talking about 3 hours before God took him to a better place. About an hour before it happened he yelled out I found it. That was God's way of letting me know that Zachary found his way to be eternally all better. I don't know why those last few moments have been in my mind lately. I keep replaying them - making sure if I did everything that I should have done or said. Not sure why. . . Maybe because I wish it was just some bad horrible nightmare and that any moment Zachary will walk through my doors and say I love you mom.

I had another sono - and seen the baby. It was kicking and moving around so much that it took an hour for the tech to get all the measurements she needed. She jokingly said this one's starting early at being stubborn - and I'm thinking as long as it's healthy! :-) So far - the baby is very healthy. Thank you God!

Thanks for all your prayers!

Nikki Leman

Friday, October 12, 2007 2:24 PM CDT

Sorry - It's been too long. Well, I've been in bed all the time lately. I've been so sick with this pregnancy. I've been to the hospital now 3 times and I may have to have surgery. I'm waiting to hear back from the Dr.s office.

The baby is very healthy. We've seen and heard the heart beat twice now.

I've been missing Zach more than ever!! Not a moment goes by and I don't think - Zachary - I need you here - mommy is missing you so much. Life has changed so much since you've gone to heaven and it's just not the same. I still tell your story's all the time!! I've learned lots of lessons and some are ah ha moments - things you've told me about - and now I see them the same way. One of those moments is when I put a dissolvable zofran under my tongue and learned very quickly why you refused to use that kind :-) Now i realize why you would only use the IV form and in some cases would even swallow it if you were needing it. Those Ah ha moments reminds me of how much knowledge you had at such a young age and what a gift God gave me in being your mom.

Now that I'm visiting Drs all the time myself for this pregnancy I'm asked very frequently - is this your first. Oh no - it's my 3rd. I tell them about my Zachary and Kylee. Sometimes I talk about you and tell stories of you just pretend for a moment that you are home waiting for me to hear the news from that day. I tell funny stories about you - you left me with lots of those. Even to your last moments. I'll never forget you bare butt dance after your last shower. As I picked you up from one chair to the next you shook that butt like you were listening to one of your fav. songs - I like big butts and I cannot lie . . . . you were so embarrased when you learned that I wasn't the only woman in there :-)

Only 42 days until our family Magical Gathering at WDW!!! Can't wait. Connor (zach's 4 yr. cousin) is convinced that he is going to find Zachary there - he said that's the first thing he is doing when he gets there - find Zach.

Love you and miss you!!

Mom

Saturday, September 15, 2007 11:18 PM CDT

It's that time of the year . . . Pumpkin Festival. This is the time of year that Zachary got to eat all the pumpkin stuff he could. He loved those pumpkin pancakes and pumpkin ice cream!

I have a funny Zachary story. I think of it - especially during this season. Zach liked going to Bob Evans and ordering their pumpkin bread. Well, we all know that it is seasonal . . . it was early 2006 and Zach ordered pumpkin bread. The waitress said sorry, but we don't have it anymore. He looked at her and said are you sure. We were just here and I had pumpkin bread. You better go back there and ask. I looked at her with a smile and thinking come on lady find that pumpkin bread. She came back and said I'm sorry no pumpkin bread. So he tracked down someone else and asked them if they had pumpkin bread. Well, you know what I ended up doing - making pumpkin bread :-)

After Zach's bone marrow transplant the first thing he asked for was pumpkin pie. St. Jude didn't have it - but, they made a special trip - bought the ingredients to make it and made him a pumpkin pie. It was still warm when they brought it to him. I believe he just looked at it. He was always good at stocking up on his favorite foods. :-) I think I already mentioned this before - but, after Zach went to heaven I slept in his bed for a few months. There were so many nights that he asked me to snuggle up with him and just put my arms around him. One morning I was picking up and noticed a box of his raspberry poptarts under his side of the bed. He would stash away food he loved so that noone could eat it - that way when he would get a craving to eat - he had it at his fingertips :-)!

Another funny - Zachary would write his name on his leftovers he would bring home from one of his favorite restaraunts. He would always take a bite and that would be it. He would bring the leftovers home - write ZACH ONLY on it and put it in the fridge. (that would be the last he would look at it) It was the joy of seeing that smile on his face when we would bring him to his favorite places that made it all worth while. Sometimes we would even drive an hour and half one way just to get there for that one bite - but I would do it again in a heartbeat without even having to give it a thought if I would have the luxury of seeing a smile on his face.

LOVE YOU ZACHARY!!!

Mom

Thursday, September 6, 2007 11:23 AM CDT

Well, I have something to keep my mind focused on and look forward to.
*****THE WHOLE ALLEN FAMILY***** is heading to Disney World in November - December - It's a gift from Zachary - It's a long story - but, the whole family is going - all 16 of us (Zach will be there too in a different way). I surprised everyone - we're flying together - and staying in 2 villas right next to each other on Disney Property as a Grand Gathering. Zachary always wanted us to all go. The papers say Zachary Allen's Magical Family Gathering. I can't wait - it is going to be so magical.

This will be the first for all my nephews and niece. You should see their face light up talking about it!! One of the nights we have a yacht reserved to watch Magic Kingdom's "Wishes" fireworks. Now that I know Zach will be with us that night. Fireworks was his thing. :-)

Praying that God will make sure that this will truly be a Magical Gathering for our family. LOVE YOU ZACH AND MISSING YOU EVERY SECOND OF EVERY DAY. I went in to have an x-ray done yesterday - I realized that it was my first time in a room like that without you - yet, I could feel your hug and smile. You still can light up my day Zachary.

Mom

9/7/07
Well, my dear daughter didn't realize that we were waiting to tell everyone for a few weeks after we have the sonogram. Yes, I am pregnant and yes what a miracle!!! We have been trying - a few disappointments and now just good news. I'm only 5 weeks now - so it's still very new. I really wanted to wait a little longer - but, Kylee is just so excited.

Nikki - mom to Teen wonder, princess Kylee and now a little sweet pea :-)

Thanks for all your prayers!

Tuesday, August 28, 2007 8:30 AM CDT

I know it's been too long - - -

Kylee started school - she's in 6th grade now. She is growing up so much!

I went to St. Jude to start scrapbooking with the moms and patients. I took my camera and printer - printed off the pictures and had made up kits for them to use for their pictures. They had a lot of fun and I enjoyed being up there - that was Zach's world for 9 years and it seems so wierd to not go there any more. I felt really at home being there. They got a new pool table - Zachary would have loved it!

John and I celebrated our 2nd anniversary. It was wonderful. We went to Chicago for 4 days and stayed at a place for couples - the Sybaris - very awesome. John had made reservations at my most favorite restaraunt - The Melting Pot - that place is so good if you haven't tried it.

I'm watching my nephew Connor today. I can't wait till he gets here. It's wierd - how it seems to work out that I'm missing Zachary soooooo much and Connor is coming over to help. I think that is Zach's way of helping out - Connor is so much like Zachary.

Kylee's Cello classes start up again - she has to be at school at 6:30 in the morning - 2 mornings every week for orchestra. She's actually looking forward to it! I'm so happy for her! This will be her 6th year in playing. She looks so beautiful playing her cello. Zach used to play the double bass with her.

Thanks for all your prayers! I started being a chemo angel - love it!!

Nikki - mom to Teen Wonder and Princess Kylee

Tuesday, July 31, 2007 11:06 PM CDT

Happy Birthday to you - Happy Birthday to you - Happy Birthday Dear Zachary - Happy Birthday to you!!!

MOMMY LOVES YOU SO MUCH!!!

Well, we're going to head over to Smoky Bones tomorrow to celebrate your birthday. Later we're going to have marble cake with whippy frosting - your favorite!! I'll make sure we'll get a bag of donuts from Smoky Bones to bring home - just like you always did. I remember like it was yesterday when your buddy Kris went with us and you guys ate all those donuts in the middle of the night. :-)!

I'm sure all of the celebrating and food you have in heaven doesn't even compare - I just wich I could see that smiling face and watch you enjoy it. It brought me great joy whenever I seen a smile on your face.

LOVE and MISS YOU!! I think of you every second of every hour of every day! You'll never be forgotten. You've left an imprint in my heart forever.

Happy 15th Birthday!

MOM

Monday, July 23, 2007 9:29 AM CDT

I had a dream last night - more like this morning. I have trouble sleeping. It was wonderful. It's been so long since Zachary came to me in my dreams -

I was dreaming that I was looking for my son. Looking all over - I looked over and there he was - Zachary sitting in a bay window looking down. I yelled out MY SON - he came running and I held him - touched him all over - feeling his skin - smelling him - with a huge smile on my face - laughing, smiling, like a slept with a hanger in my mouth. (Zach and I loved watching Friends together - I think Phoebe or Monica said that - and we always laughed at it)

The most awesome thing - that feeling - the feeling of everything is ok - My family is one again - I'm not missing something - that hole was filled in those moments of my dream. The most amazing feeling of holding Zachary and knowing that our family was perfect - all ended when I woke up.

But, it still felt good hugging him and touching him in my dream.

10 days till your 15 Zachary!! Your cousin Connor loves your 13th Birthday Present - the Go Cart - he loves riding - - - He reminds me so much of you Zachary. The whole family got together for one of your favs - a fish fry. Then we all enjoyed riding the go cart and talking about our trip that your making possible for everyone. The whole family is going to Disney World - - -

LOVE YOU BUNCHES AND MISS YOU EVERY SECOND OF EVERY DAY.

MOM

Monday, July 16, 2007 11:42 AM CDT

I know it's been a while since an update. I've went back and read all the journals over the week. Trying to feel like it was yesterday since I've held my Zachary. In 2 weeks it will be his birthday. That day is the most precious. The last couple of days have been extremely hard. It feels like moments ago when he was born. He just looked around - wide eyed and no crying. And when they handed him to me - that was the most awesome feeling - loving someone so much and the happiness - there is no greater joy than to hold your child for the first time. The dreams that you instantly have for your child - a mother never lets go of those. Even after he is gone - I still can't let go - I like to picture what he would look like - now almost 15 years old. What a handsome young man!

It feels unreal yet - after 14 months of him not here with me. The lost feeling is very real though - not having him - - - Getting easier with time? NO - NEVER - that is a very big misunderstanding people have - because it doesn't get easier for a parent. It gets harder - you get mad at yourself for living and going on - - - it doesn't seem right for us - How could it be - for my Zachary moments - time has stood still - he is still 13 - - -

LOVE AND MISSING YOU SO MUCH MY DEAR ZACHARY

MOM

Monday, July 9, 2007 11:32 AM CDT

So, we need a Zachary story on here. Last night I was laying in bed and remembering all the fighting between Zachary and Kylee and how in those moments I would of never think it would be something I wish I could hear again! I would be getting ready for work and Zachary would come in to say - ah mom, Kylee is eating chips for breakfast. Ah mom, Kylee is wearing something that is for summer and it's snowing outside -

Guess what Zachary - Kylee is still sneaking chips for breakfast in the morning - she still wears summer stuff during the winter seasons - and that is with me getting after her!! You couldn't stop it by telling on her and I can't stop it and I'm her mom. :-) Zach would yell - mom - you never get after Kylee! Then Kylee would yell, I always get in trouble - but you never get after Zach.

None of that is ever said any more - except Kylee comes in with tears saying how she misses her bubby. Yeah - mommy is missing him too. I just hold on to Kylee even more and thank God that I have her to love on.

Zachary will be 15 August 1st. (every time I see his friends he grew up with I can't believe how big they are getting. They are growing up - and how I walk away trying to picture what Zachary would look like now - with tears and smiles) I can't believe that his 13th birthday was the last one here on earth. I'm glad we gave him 4 parties that year!! :-) My favorite part was him getting his go-cart! I loved that smile, the hug I got from him and those words he told me - I love you. I love you - 3 words that I long to hear from my Zachary every single second of every single day. MISS YOU!!

Mom

Wednesday, July 4, 2007 11:27 PM CDT

We had our family over for a cookout - then we all headed over to watch Central Illinois's Firework show - 5500 fireworks - it was pretty neat.

The biggest news from the evening is that everytime I took a picture of all the kids together - there was this orb above them. This orb I know was Zach. So, I'll post some pictures on here. I gotta tell ya - I am just so excited to have some updated pictures and with the most amazing bonus - Zach's in them. I know you must think I've gone crazy - o o o o hhhhh well, I'm just so gosh darn excited to have pictures with all the kids and with Zach making his way in the pictures!

LOVE YOU A WHOLE BUNCH MY DEAR ZACHARY!!

THANKS BUD - MOMMY WAS SO EXCITED TO LOOK AT THE PICTURE AFTER TAKING IT AND SEEING YOU - - - I've noticed orbs around you at the last couple of months before you went home to be with Jesus - but tonight - one orb - it's gotta be you.

MISSING YOU!!

Mom

Sunday, July 1, 2007 9:50 PM CDT

Today I was reading journals from 1 1/2 - 2 years ago - remembering times with Zachary.

July 4th is right around the corner - that was one of Zachary's FAV's!! He loved lighting them off. My dad and brother watched him carefully and let him be one of the grown-ups on that day. I remember the smile on his face - him walking around with a punt - trying to hunt up the biggest and best firework to put a smile on all of our faces. Kris was with Zachary on the last time he got to let off the fireworks - both of them were having lots of fun! July 2005. Zachary, my brother and I went to the Pekin Park and watched them while Mr. Zachary played with his radio control monster truck. He stated that he knew that it was his last 4th. I got after him and told him to never say stuff like that - ever. I don't like him thinking about those things.

I remember looking at his face just after a really big firework went off and the smile on his face that night.

M I S S I N G Y O U

My Zachary!!!

My Son - LOVE YOU FOREVER - - -

Happy 4th!

I know how you looked forward to letting them off. Now you have a whole new view. How is it? I know - you wouldn't have it any other way! I'm just being selfish and missing you so.

Mom

Monday, June 25, 2007 2:02 PM CDT

We had a really nice time in Florida! John had a nice father's day . . . I could tell he thaught of Zachary often. John, his brother and nephew went deep sea fishing - they caught around 25 fish - I know Zachary would of loved that and I could tell John was wishing that he could of had some father and son time fishing. He still was in good spirits. John knows that if he doesn't then I wouldn't be in such a good mood.

Kylee loved swimming!! I got a few pressed penny's - one say's I love you - Panama City Beach, FL. Perfect to put on Zach's grave - just to let him know that he was thaught of often and missed bunches!!

Thanks for everyone's support!! We love you guys.

Nikki -

Love and miss you my dear Zachary - Mom

Friday, June 15, 2007 0:02 AM CDT

So, this journal I will try very hard and make sure that my anger doesn't show through :-)

We're getting ready for summer vacation - Panama City, FL

A nice - no stress - on the beach kind of vacation. No plans - just lounge - and spend some nice qaulity family time just the 3 of us. I told John that I'm taking one of Zachary's empty pressed penny holders and collecting some when I see them. That way a part of Zachary will be on our vacation. He collected those from EVERYTWHERE. I have several holders FULL of pressed penny's - Disney, Memphis, San Diego, - lots of different places. It's just really nice to be able to go through the motions to do things that I know we would be doing if Zachary was here with us and not in heaven.

It will be the first trip to Florida without Zachary - - - John was remembering tonight how Zach would sing songs and change the words to make them funny - that must be why Wierd Al was one of his favorites! :-) Anyways - he was singing a song with Zach's lyrics and - good ole Zachary put a smile on his mom's face tonight.

It seems so unreal sometimes that someone so important to you can be with you everyday for almost 14 years then one day they're gone - - - and no matter how bad you want them back there is just no way to get them back - impossible to put words to.

ZACHARY - MOM LOVES AND MISSES YOU!! xoxoxoxoxoxoxoxoxoxox

Tuesday, June 12, 2007 9:43 AM CDT

After church on Sunday - I've gotta say that it is just really hard for me to WANT to go to church. Afterwards I'm an emotional mess - why put myself through that.

The sermon was on offended hearts - my lovely husband after church was over - said "you do realize that - that's what our problem is don't you?" - (do you have any idea how I just wanted to slap him silly!?!?).

Offended heart? Da!

Ok - the pastor stood up there saying that Death isn't God - sickness isn't of God -

Then he got into talking about offended hearts -

I was ready to punch a wall - which with the surge of adreneline (I know I don't spell very well lately) that I had going through my body I probably would have been able to punch right through it.

So - I left church thinking - ok - so what did I learn today? I knew that my heart is offended - but can Zachary come back and be all better so that my heart can be whole again? I live the reality every day - the answer is no. So, did I really get anything out of going to church? No, because I knew what my problem was - but no one fixed the problem. No one gave me the answers to my offended heart - why did Zachary have to die? Why didn't God do a miracle for my son - but he does for others? Why? Because my Zachary - of course I'm his mother - he DESERVED to GET HIS MIRACLE RIGHT HERE ON THIS EARTH. I could hold him still - smell him - touch him - hear him say I love you mom -

Sure my heart is offended - - -

LOVE AND MISS YOU MY DEAR ZACHARY - mom

Monday, June 11, 2007 8:59 AM CDT

Just thought I'd put on here a Zach story. It's a memory that came to me while riding with John this weekend -

We had many trips to Memphis - Just Zach and I driving along - We invented many games to keep us entertained - we're both competitive - even at really stupid games - but hey, FUN is what it's about!!!

Zachary decided on this occasion that the first one to yell out "Cotton Field" first when locating one - keep a tally - the one with the most "Cotton Fields" wins and gets to pick out where we stop to eat. (just so you know - Zachary ALWAYS gets to pick out where we stop) - I was just so thankful that he ate -

Zachary of course started just yelling out "Cotton Field" because the more south you go - that is all the fields you see - I can just here that voice - Me being a grown adult handled it like any adult would - I tried to drown out his voice and tried saying it more :-)!!

I know - dumb game - but what an awesome feeling when a memory feels so alive you can do nothing but laugh then cry because you miss it so.

We played silly games like that - and we would sing to Veggie Tales - now that was so fun. I think that was our favorite. We both knew all the songs by heart and they are so fun to try and sing with.

Missing you Zachary - LOVE YOU BUNCHES!!!

MOM

Monday, June 4, 2007 8:04 AM CDT

I'm sorry for the updates lately - I've been having a hard time and the reality of everything . . .

I guess instead of learning a vaulable lesson from Zachary lately - everyone can see a glimpse of how a parent feels when their child is no longer here to be able to touch, feel, smell, just see - and how you should never take that for granted. If you'd rather be learning a valuable lesson from Zachary - I would too - that is something that I miss so much. My son had wisdom way beyond his years - I miss that insight / different perspective on everything. He always thought the best of everyone and he always would get after me if I would ever have anything negative to say.

Lately, I just break down - I've never cried so hard and it just feels like everything so deep hurts - The reality of Zachary not coming home through our doors again - is so real that there are no words to explain accuratley how it feels. I still have his shoes ready for him in the closet if this is just a nightmare and everything goes back to normal :-) I know - - - The black Nike's that sit there - I just can't bring myself to put them away. I remember when he wanted those and they could only be found in catalogs and the day I wheeled him into the shoe store and that BIG O'L SMILE on my Zach's face - he looked up at me and said "Mom they've got my shoe - can I?" Why bother asking (like I would say NO!?) He had that smile on his face the whole time - A memory that will hopefully stay with me forever.

Zachary's friends that was in 7th grade while he was in 8th graduated last week - I wanted to be there. CONGRATULATIONS HOLLIE AND GABI!! I kept of making a fool out of myself and stayed at home :-) The thought of everyone going to be at Pekin High this fall - Zach would be a Sophomore with Kris - and all the girls would be Freshman. This would be an awesome school year for Zachary and he would be looking forward to it I'm sure. I can't believe August 1st he would be 15. His buddy Kris just turned 16!!

Love you Zachary - Missing you bunches.

Thanks for everyone's support!

Nikki

Monday, May 28, 2007 9:36 PM CDT

We have made it through 1 year of Zachary not being with us on this earth. There were moments that it felt like it was getting ready to happen all over. It was nice having everyone here supporting us. It felt nice to have his friends with us.

Zachy Boy's BBQ turned out to be a hit. Everyone seemed to love the food.

Kylee stayed with grandma and grandpa most of the weekend and John & I enjoyed some quiet time together. We've been so busy it was so nice to lounge around and do pretty much nothing :-)

The St. Jude Fun Walk is coming up - Saturday June 9th. Can't wait to see everyone there!!!

LOVE AND MISS YOU BUNCHES MY DEAR ZACHARY!!!

Mom

Wednesday, May 23, 2007 9:33 PM CDT

LOVE AND MISS YOU MY DEAR ZACHARY - MY SON -

WISHING EVERY MOMENT OF EVERYDAY THAT THIS NIGHTMARE WOULD END AND I WOULD WAKE UP TO YOUR SMILING FACE READY TO LIVE THAT DAY BIG AND LEARN ALL THE LESSONS YOU WOULD HAVE ME LEARN - - - YOU HAD WISDOM OF AN 80 YEAR OLD - - - YOU AMAZE ME! I CAN STILL HEAR YOUR SHUFFLE (YOU WITH THOSE BIG SLIPPERS WALKING DOWN THE HALLWAY) THAT SOUND KNOWING THAT YOU WERE COMING MY WAY AND I KNEW THAT I WOULD BE GETTING A SMILE WITH A HUG AND KISS AND THOSE SIMPLE WORDS - I LOVE YOU -

JUST THAT LITTLE SOUND OF YOUR SHUFFLE I LONG FOR - THOSE SLIPPERS ARE IN THE BACK OF THE CLOSET WAITING FOR YOUR FEET AND YOUR CLOTHES ARE VACCUM BAGGED UP ON MY TOP SHELF IN MY CLOSET WAITING TO BE MADE INTO SOMETHING - - -

JUST LETTING YOU KNOW THAT WE LOVE AND MISS YOU BUNCHES AND ON SATURDAY - MAY 26 YOUR WHOLE FAMILY WILL BE TOGETHER SENDING YOU BALLOONS AND LOVE AND EATING YOUR FAVORITE FOODS. - WE'RE HAVING A ZACHY BOY BBQ JUST FOR YOU.

LOVE YOU

MOM

Monday, May 21, 2007 2:55 PM CDT

This Saturday for May 26th - I didn't send out invitations for Zachary's 1 year - I kind of been having a really hard time lately and didn't want people to feel uncomfortable to be around me crying. Anyway - We'll be at his grave at 11:30 to release balloons and then we're having a BBQ with Zach's favorites - so We are calling it Zachy Boy's BBQ -

Zach LOVED BBQ - he used to tell me all the time that when he got older he was opening a BBQ joint and calling it Zachy Boy's BBQ and using his grandpa James BBQ sauce.

I WANT TO TELL GSLS how thankful I am with their support and the gratitude I have for them making a memorial for Zachary. GSLS took up a collection to have a memorial done for Zachary at Camp Cilca. This is such a blessing - Thanks for remembering Zachary in this way - there are no words to tell you what this means to me.

Well, we're done remodeling till fall time. I told John that I'm ready for a nice summer vacation. I'm not working any more on the house until fall time.

We remodeled Zachary's room (we also remodeled our bedroom and bathroom in 7 days - including new fixtures and everything!!). We put wood flooring down - and turned it into a scrapbooking room. I have turned one of the walls into a huge scrapbook page and it says Where Memories Are brought to LIFE - with a family photo of the 4 of us. Then I have a cabinet with his most favorite things - with pictures of him. On the other wall I'm going to make another scrapbook page that says forever Zachary's room. Because, I'll never stop calling it Zach's room. I've put my favorite T-shirts in vaccum sealed bags - so that they are safe and free of dust and stuff - I am making them into quilts and pillows and stuffed teddy bears. I saved the shirts that have Zach wrote all over them :-) I can still see him shopping for them - picking out the ones with funny sayings. Things that would make you smile. I'm really missing him right now. It's almost been a year - people that say it gets easier - I'm thinking they are crazy and don't know what they're talking about. It DEFINETELY IS NOT ANY EASIER. And for anyone to put a time on how long I should just be over it by now - is totally wrong. I think for every moment that he is gone that I'd rather have the responsibility of taking care of him and giving him meds every few seconds and catering to his every need for the rest of my life than to live one more moment without my Zachary on this earth.

MISSING YOU MY SON - MY ZACHARY - LOVE YOU LOVE YOU LOVE YOU LOVE YOU - See you on the Flipside

Mom

Tuesday, May 15, 2007 11:40 AM CDT

I'm glad Mother's Day is over. John and I stayed home and finished remodeling our bedroom & bathroom. I love it.

Kylee went with my mom and sisters and had a picnic. John made breakfast in the morning and I hung out with Kylee. I could tell that I was an emotional wreck and needed to stay extremly busy - so I did just that.

Kylee is getting excited about the summer. She's played the cello now for 5 years and this year we are attending a cello camp in Michigan. Kylee can't wait.

Don't forget about the Fundraisers coming up. I only have a few registrations and it's approaching the deadline. May 21st is the deadline.

Here's the 411 for the 2 events that give you an opportunity to change the future for Kids of St. Jude:

2nd Annual
Chad Creech/Zachary Allen St. Jude Fun Walk
Saturday, June 9, 2007 10:00 a.m. - Noon
Pekin Park Lagoon
Please have your registration in by May 21, 2007 to order a
T-shirt.

Please Mail Registration to: Nikki Leman
1309 Lincoln St.
Pekin, IL 61554

Mail your name, address, city, state, zip, phone with your T-shirt size - Registration fee is $20.00 for adults and $10.00 for kids.

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

1st Annual
Croppin for a Cause
Saturday, June 16th 9:00 a.m. - 9:00 p.m.
Pekin 1st Church of God
2520 Maywood in Pekin
$25.00 includes lunch & dinner and all the fun!!

Please register by June 2nd.

Send Registration to: Jackie Matheney
2414 Willow St.
Pekin, IL 61554

Mail your name, address, phone# and your money by June 2nd.

Of course if you are unable to attend either event your donations are always welcome :-0. ALL proceeds go to benefit the Kids of St. Jude Children's Research Hospital. Please make checks payable to St. Jude Runners. The kids thank you and so do their parents!!

Thank you for all your support!!

Nikki Leman

Zachary - Mommy loves you so much and misses you every second of every day. Thinking of you always. I was thinking yesterday - that it must be pretty awesome to live in a perfect place with the most famous - most popular - Jesus. Wow - all the riches - with notta one negative thing. Love you and so happy for you that you are all better - no pain - no sickness - only happiness. Only . . . knowing all of that it still doesn't take away the fact that I miss you with my whole heart. Trying not to be selfish - - -

Sending love and kisses! Mom

Thursday, May 10, 2007 8:37 AM CDT

I dug out my 3 Mother's Day Cards from Zachary last year - I've put on here how he picked out 3 cards and a present to go with each card last year. I've decided to share them with you. This way you'll know just how much Zachary is missed . . .

The first one is those Hallmark music ones and it's the one that's on the commercial. It's so Zach - He started it off with a funny :-)

There's just one way to feel about having a mom like you . . .

Really, really good!

Then he wrote - I truely feel good for having you as a mom.
Love ya always. Your son Zach :-)

The next two are just so amazing . . .

A Son Remembers
It's just a kitchen table, much the worse for years of wear, with Memories in each scratch and stain from all that happened there- the paint that never would come off, a scissor nick or two, the dent where something heavy dropped, a bump of dried-up glue . . . the scroch left by a cookie sheet, the surface worn and faded where hands were held and elbows propped and countless stories traded. It doesn't show the teardrops, and it has no voice to tell the secrets shared, the joys revealed, but those are there as well. Around that kitchen table, life was happy and secure, and my heart will feel that love as long as memories endure.

On Mother's Day I can't help but wander back through all the memories I've cherished through the years . . memories that keep you close in heart, today and every day.

Happy Mother's Day

Then Zachary wrote - Sorry but I had to pick all of them. Love you Always. Love you - your son Zach :-)

(he always drew a smiley face after his name)

The final card -

With Love From Your SON On Mother's Day

There's a place within my heart that always-and only-belongs to my mom.

Many times, Mom, I forget to say thank you-I don't often say that I love you out loud - I don't always know how to put into words all the times when you've made me feel grateful and proud . . . Yet often I realize deep in my heart there's no way to repay you for all that you've done - And there's not a moment when I'm not aware of how lucky my life is because I'm your son.

Happy Mother's Day

Zachary wrote - I love you with All my heart.
Love ya.
Your son, Zach :-)

It's already one of those emotional mornings. I found a picture from April 23, 2006 - and it's like he's looking right at me with a smile saying I love you mom.

I don't know if I'm going to do anything on mother's day. Not looking forward to that day - I know Kylee - I'll Make myself get up and do something.

Nikki

Love and miss you my Son - My dear Zachary!!!! Mom
And by the way Zachary - our kitchen table is no longer a happy place. Forever missing you! (A lot of the time we don't even sit at the dinner table - I avoid the fact that 4 place settings is no longer needed) I know Zachary - you hate it when I avoid things like that - but, I'm trying - there are days when Kylee insists. Mom

Tuesday, May 8, 2007 8:34 AM CDT

Reading last years journaling during this time - Zachary had just a few more good days left and he lived them BIG!! He never complained and pushed himself to do everything he could - including picking out his Bearded Dragon (which took a very long time)!! He stuck his hand in the cage and waited for one to crawl up into his warm hand. He always after his first surgery in 1997 had only one warm hand - the other was ALWAYS cold! The same dragon (Spike) crawled into his hand every time - his oxygen tanks were running low and I needed to hurry Mr. Zachary up :-). You should see how big Spike is. A few days before Zachary went to heaven - he asked John to take good care of Spike for him.

Anyways - it's alwmost Mother's Day - and if you remember last year Zachary had John take him to pick out the gifts and cards - The day Zachary went into the hospital last year he had John bring the cards and gifts he picked out. I still look at them all the time. Thinking how - - - special it is being a mom to 2 amazing kids. What an honor to tell people that I'm Zachary Allen's mom and Kylee Allen's mom.

Here's the 411 for the 2 events that give you an opportunity to change the future for Kids of St. Jude:

2nd Annual
Chad Creech/Zachary Allen St. Jude Fun Walk
Saturday, June 9, 2007 10:00 a.m. - Noon
Pekin Park Lagoon
Please have your registration in by May 21, 2007 to order a
T-shirt.

Please Mail Registration to: Nikki Leman
1309 Lincoln St.
Pekin, IL 61554

Mail your name, address, city, state, zip, phone with your T-shirt size - Registration fee is $20.00 for adults and $10.00 for kids.

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

1st Annual
Croppin for a Cause
Saturday, June 16th 9:00 a.m. - 9:00 p.m.
Pekin 1st Church of God
2520 Maywood in Pekin
$25.00 includes lunch & dinner and all the fun!!

Please register by June 2nd.

Send Registration to: Jackie Matheney
2414 Willow St.
Pekin, IL 61554

Mail your name, address, phone# and your money by June 2nd.

Of course if you are unable to attend either event your donations are always welcome :-0. ALL proceeds go to benefit the Kids of St. Jude Children's Research Hospital. Please make checks payable to St. Jude Runners. The kids thank you and so do their parents!!

Thank you for all your support!!

Nikki Leman

Any questions - call Me at 347-3625 - Thanks!

Love and Miss you Zachary!! - Mom

Wednesday, May 2, 2007 7:47 AM CDT

May 26th will be one year. Some moments it feels like recent and others an eternity since I've wrapped my arms around my son and heard him tell me that he loved me.

A few things that would mean so much to have friends and family to help support in the following ways:

May 26th at Zach's grave we will be doing a balloon release at 11:30 a.m.

June 9th: 10:00 - 12:00 there is a Chad Creech/Zachary Allen Fun Walk scheduled at the Pekin Pavillion to raise money for St. Jude. $20.00 for adults and $10.00 for children - includes T-shirt and the awesome feeling of helping fund - find cures and saving children. Please have registration & money in by May 21st.

June 16th: 9:00 a.m. - 9:00 p.m. there is "Croppin for a Cause" - all proceeds go to St. Jude. It's held in Pekin at Pekin 1st Church of God / 2520 Maywood. $25.00 includes lunch and dinner and all the fun!! Please have registration and money in by June 2nd.

It would mean so much to have friends and family supporting us and helping us remember Zachary in this way. That's what he would want us to do - to help raise money to find cures and save children!

Let me know if you have any other questions.

Thanks!! Nikki

Love you Zachary and Missing you bunches!!!

Mom

Thursday, April 26, 2007 7:17 AM CDT

Today is Kylee's 12th Birthday. I'm sure as the day goes by it will get harder - this is another first. Last year Zach had me take him to the Disney Store so he could buy her a Tinkerbell swimsuit with a towel that matched for her birthday. We all celebrated her birthday at Grand Bear Lodge last year - which was one of Zach's favorite vacations. He made a video before he went to heaven and talked to each of us and told us that he had 2 favorites the Disney Cruise with his best friend Kris and the family vacation to Grand Bear Lodge just 3 weeks before he joined Jesus in heaven.

Zach's headstone was set on Monday and I have to say it is even more beautiful than what I had imagined. I feel Zachary when I'm there now. It is totally Zach - I believe if he would of picked out one - this would be it. I'll post pictures of it in the next couple of days - I don't know where John put the camera cord for the computer. I always put it away in the same spot . . . but I wasn't the last one to use it :-0!

Anyway, thanks for your guestbook entries - I still enjoy reading those!

Love you Zachary!! Missing you soooooooo!

Mom

Saturday, April 21, 2007 6:01 PM CDT

Well, this morning John and I went to see Zachary's stone. It is finished and will be set on Monday - pray the weather will be nice so that it can be for sure set on Monday. I can't wait to go out to Zach's spot and have his stone with bench there. I will post pictures of it soon - I forgot to bring my camera to take pictures.

The etching of Zachary with Jesus on the back - getting ready to dance through those gates - is really good. That way I can just imagine what it was like for him on May 26, 2006. Zachary looks just like what he did when he walked me down the isle - and now he's not with me anymore but with Jesus and Jesus walked him through those gates. I bet that was such an amazing feeling for Zachary. No pain - no saddness - full of joy - what a sight!! Heavens Gates - - - too beautiful for words - - - and My Zachary got to experience it!!

Love and miss you sooooooooooooo much!!

Mom

Tuesday, April 17, 2007 10:20 PM CDT

It will be one year since the picture of Zachary and Kris was taken at the fire station. Zachary looks so happy in that picture - he looks so healthy with that beautiful smile on his face. Some moments it seems like yesterday and others an eternity ago. I miss him so -

This past weekend we were at St. Judes in Memphis for a Memorial Service - Celebrating the life of the children. It was nice - they even had a special thing for Kylee. Kylee made something special to remember Zachary. We did a few things that Zachary always enjoyed in Memphis. I have to say it was difficult - for 9 years we made lots of visits to Memphis - never without Zachary. That was another first. Zachary's one year of being with Jesus and being free from his disease is just a month away. I know I'm suppose to be rejoicing for him - I'm hurting so bad not having him here. Missing him terribly.

I am getting things together to start doing every year to remember Zachary. I want to bring life to his legacy - do things to keep Zachary alive in our hearts. Lately I've been scrapbooking EVERYTHING to bring Zachary alive in my thoughts everyday. I love it. I enjoy it very much. I was building a shelving unit yesterday with my sister (John's on business). I started laughing and told her I could just picture Zachary - t-shirt - boxer shorts - legs so skinny they just kinda hung there - slippers that he would shuffle in - and his bag of IV meds slung over to the side - Zachary telling me he has it all under control - and Zachary taking the hammer and electric drill and making it himself. I could hear him "Mom - I got it - go sit down"! I was laughing - but just a few moments later they turned into tears. Missing that little tiny bony butt hunched over - always telling me he can do it - - - and telling me to get lost :-)

LOVE YOU ZACHARY!!!! MISSING YOU!!!

MOM

Saturday, April 7, 2007 11:01 PM CDT

Happy Easter!

A Zachary Story . . . Well, Zach's favorite candy - blue sour starbursts - and for Easter last year I bought a couple bags of sour starbursts and picked out the blue ones and bagged those up for Zach's Easter basket - Along with a whole bunch of other candy. That Easter basket is in his closet full of candy still - he didn't want anyone to eat it because if he got a hunger for candy he liked having a stash. I guess that was comfort enough for him - if he ever felt like he could eat and keep it down he wanted it there waiting :-0! I looked at his basket last week - thinking how he was so funny about alot of things at the end.

One more funny - I was cleaning out the closets a few weeks ago and came across his jacket from last year around this time. I looked in his pockets and they were chuck full of napkins. What in world would my Zachary be doing with all these napkins ???? Then John reminded me he liked taking a handfull before he left somewhere - - - don't know why it was one of those things that got really weird at the end. Hey gotta love it. He always put a smile on our faces - the funny thing was - I'm sure he found uses for those napkins along with all the other gadgets that he had attached to his IV bag that he carried around the last year of his life on this earth. He had a watch (with LED light) buckled on one side - a bright little flash light on another strap - a pocket full of change - another pocket full of tissue - and another pocket full of batteries - AA and 9 volts - hey now - you never know when you will need a battery. He really didn't want his IV pump to die so he made sure there were replacements.

This is the one of those Holidays that I'm so very thankful we serve an Awesome God!

Nikki - Zachary & Kylee's Mom

Wednesday, March 28, 2007 9:29 AM CDT

Getting ready for Kylee to start her Spring Break. She's happy she don't have school - I'm happy because I have all that time during the day just the two of us spending time together.

Last week I got a really special Spring/Easter decoration for Zach's "spot". I can't wait for his stone to be ready. I ordered it the week after he went to heaven - the granite came in November and they are still working on the etching. The front of it is done - now they are still working on the back. It does have ALOT of etching on it - it's extra special just like Zachary - extra special. It will be so nice to go and sit on his bench when it's done. Sometimes I like to just sit there.

Cleaning the house - when I got to the kitchen I noticed I still had that one pickle in the back. Zachary LOVED dill pickles - I couldn't bring myself to throw it away. When cleaning out the front closet - I noticed that all his shoes were in the back - from not being worn. You would think I would pick them up and box them up - no, not me - I still like to think that one day he will use them again. Don't know why - I just don't like the thought of "getting rid" of Zachary's things. This home is surely NOT rid of Zachary - I feel him all around. So, I like to make it feel like if Zachary were to physically be here - I still have a spot for him in this home. Because he will ALWAYS be part of this family. That's one of the reasons I still sign his name on cards and things - because he will always be part of us - he's just living somewhere else right now.

LOVE YOU ZACHARY AND MISSING YOU!!

Mom

Wednesday, March 21, 2007 11:46 AM CDT

REMINDER:

St. Jude Rummage Sale
Saturday, March 31st
Pekin Township Hall (420 Elizabeth St.)
9:00 a.m. - ???
Come help support the Pekin to Peoria St. Jude Runners!! Kayla Meints is running this year for Zachary - what an honor!
*************************************

Thanks in advance for your support!!

It's Spring time! John's taking Thurs. and Fri. off so that we can declutter our house! I can not wait. I will feel like a new woman after it's all nice and clean with NO clutter!! It's Zach's room that I'm thinking about. I'm not sure if I will be able to go in and tackle that room or not. He collected EVERYTHING - from pens, to coins, basketball cards, turtles, swords, walking sticks, I'm telling you EVERYTHING!! I have to laugh when I go in there and start hunting up a new treasure for myself. He was such a neat kid!

Kylee's room we tackle every month because her room could very very easily get out of hand! Enough said about that! :-)

April 13th & 14th we will be at St. Jude for Day of Remembrance. I'm looking forward to it. Of course we HAVE to stop by Lambert's on the way there - it just wouldn't be a trip to St. Jude without it! I would try every time to "sneak" by - but Zachary would always wake up just in time to remind me - HEY MOM - Lambert's only 10 more miles. That always made me smile. Because they give you enough food for 10 people instead of 1! Of course Zach would order the rack of ribs and eat ohhhhh 1. But hey, it was worth it - seeing that smile of his. Of course we can't forget the "thrown rolls"! Zach would open his roll and wait for the sorghum - and wait and wait and then he would start asking for the guy that has the sorghum.

Lot's of things going on here and once things are more set in stone - we will update you on everything.

Thought I'd give you a Zach story to put a smile on your face - something he lived for - making his friends and family smile!!!

Love you Zachary and miss you bunches!!

Nikki - Mom to Teen Wonder and Princess Kylee

Sunday, March 11, 2007 10:41 PM CDT

I was really excited to read Gabi's message that GSLS is collecting money for a memorial for Zachary. That means so much to parents that loose their children. Parents usually have the honor of showing how proud they are of their children as they grow - like during their wedding - school plays - their High School Graduation - College Graduation - all that is stripped away and now the only place that Zachary lives is in my heart and the only way I can show you how proud I am of my son is in my stories I tell. By the way, I know my friends and family are probably so sick of hearing Zach this and Zach that - but, I wish I could explain - Zach and Kylee are both very special - it's been so long since I've hung out with Zachary - I miss him so and the only thing that helps is to talk about him all the time and I mean ALL the time. I'm sorry if I drive you crazy with all the Zach stories.

When people choose to remember my son it means so much to me that I can not express it in words. My Zachary lived his life with the knowledge of how sick he really was and never let that get in the way of living his life. I'll never forget July 11, 2005 . . . Zachary's Dr. told him what was going on and explained to him the circumstances - when the Dr. left his room Zachary looked at me and told me that he wasn't going to die and that he was going to get better. I believe the Dr. gave him the determination to choose to keep living after that day. Zachary always liked to prove Dr's Wrong! The next day I held his 13th Birthday because that was the Dr.'s orders because Zachary maybe had a few days. His 13th Birthday wasn't until 8/1 so we held it on July 12th - then again on July 30th and of course Aug. 1st (everyone was so amazed at Zachary). Well, Zachary lived 10 more months - so what he was on continuous IV meds - He didn't let that stop him from being happy and living Big. I don't know how he did it - well, I know it's because He Believed God was going to get him through. He talked to God all the time and knew exactly what God wanted him to do. He did it - He lived his life with Faith, Hope, Love, Peace, Joy - Because of God - even with Dr's telling him he was going to die. What an example I lived with for almost 14 years - My son taught me so much!!

Zachary always had a smile and always was ready to cheer up everyone around him. He makes me so proud to be his mom. What special gifts from God - both Zachary and Kylee!

Nikki - mom to Teen Wonder & Princess Kylee

This is part of an entry from Feb. 15, 2006 - this is the feeling that I miss having -

each day that Zachary comes wheeling into St. Jude - Do you have any idea of how PROUD I am to wheel my son in there . . . ???? Along with his smart come backs that puts a smile on everyones face . . . How I love my Zachary! The feeling I get that I look over in the passenger seat and see Zachary right there next to me - I am full of smiles - Zach puts his hand out and wants to hold my hand and says - mom, I love you! If it wasn't for you - I wouldn't be here today.

Tuesday, March 6, 2007 4:01 PM CST

Can't explain it - but the last few days I've missed Zachary so much. I went to Wal-Mart (Zach's favorite shopping place) and there was this young man - 13 - 14 yrs. old and when he turned around I thought it was Zach. My heart leaped with joy and I wanted so bad to run to him and hold him and tell him how much I love him and miss him. Rationally thinking I had to tell myself that it couldn't be Zach - and as I got closer I could see that it wasn't Zachary - how I would only wish. Zachary's room is exactly how it was left by Zachary - a little messier because sometimes I go snooping around and see if I could find myself a treasure - something that would make a memory feel like it was just yesterday that I held him. Just think - August 1, 2007 Zachary would be turning 15. Which reminds me - his best friend, Kris, will be turning 16 on May 18th. May 18th 2005 Zachary took Kris with us on our Disney Cruise - memories that no one could ever take away. Kris and Zachary went on a teen cruise in Nasau.

Well, I'm fixing dinner for my hubby and Kylee Lynn. I'll update sooner.

Thanks for your continued support!

Nikki - mom to Teen Wonder and Princess Kylee

Tuesday, February 20, 2007 8:00 AM CST

I know I said I would put on here "Zachary's Purpose". I thought about it and I believe I am going to wait until his one year anniversary LIFE CELEBRATION. I'm putting one together and will put on here the date, time, place and everything.

This is something that I'm enjoying very much! Reliving memories through pictures and picking out funny moments on video to share. Things that will put smiles on everyone's face. Something Zachary took great joy in!

Thank you so much for the continued prayers and support. I still have several moments a day when the fact of Zachary not here on this earth becomes such a raw and real feeling there's nothing to do but cry.

I took Kylee and her friend to see Bridge to Terabithia. (Funny thing is Kris's parents with his little brother was watching the same movie :-)!!) Watching that reminded me of what a special gift he gave me in his friend Kris. Zachary had a way about him - he was able to choose such a great friend because he could see Kris's heart and knew what a special find he was. God placed Kris in Zachary's path to be able to enjoy friendship the way those two did.

Nikki - Mom to Teen Wonder and Princess Kylee

Thursday, February 1, 2007 9:02 AM CST

Today is a good day. God has finally - in his perfect timing allowed me to understand Zachary's life and to be able to celebrate my sons life and not be mad at God for taking my son at such an early age.

I will be sharing with you how Zachary had a purpose in his life and he served that purpose. He was so close to God - he was able to talk to him and hear what he wanted Zachary to do and unlike the majority of us here on earth - Zachary chose to obey and listen to God - he wasn't embarassed - instead he did it in a manner with such grace, a smile, and humbleness. Zachary thought of others even to his last moment on earth. All children are gifts from God - today I can see clearly the gift that God gave me in my son Zachary. I thank God for allowing me to have that understanding - without it I was at a complete loss - today I have joy. A joy that surpasses all understanding - a joy that I thought I would never have until I met up with Zachary in heaven.

For now, I will gather my thoughts with the right words and will share with you soon "Zachary's Purpose". Today, I will leave you with knowing that indeed Zachary did have a purpose and there was nothing that could of stopped it - God made sure that Zachary served it and allowed me to understand. What a gift!

Nikki - mom to Teen Wonder and Princess Kylee

Monday, January 15, 2007 10:47 PM CST

I can't believe how it's January already and it seems like Christmas passed us by. As I took all the decorations down I said to myself why did I even bother. I felt like I was taking them down without ever celebrating the holiday. It was so emotional taking everything down. I came across our cards from last year with some letters. One in particular - the Meints - my favorite part was on the bottom telling Zachary how you couldn't believe that he made it through a whole day of school and even played the chimes. (I loved teasing Zachary and calling them the "bells" - he would get so defensive and say NO - it's chimes and Kylee would say - hey Zach - you like playing charms giggling - only Zach wasn't giggling and would get so upset!:-)) Those moments sure were proud moments - I was so proud of my Zachary. How amazing he was - the strength he showed. Which brings up the fact that I came across some black pants that I bought for him to wear to the Spring show that he was playing the chimes in - still had the tags on them - he was already showing signs of not doing so good. I hated when he wore something extra big - it was just a reminder of how he was loosing so much weight. He was determined - if it wasn't for getting sick and not able to stop - he would of went . . .

Last year during this time Zachary was getting ready to cross one more thing of his dream list - things he really wants to do - We went to see the Globe Trotters last year 1/18/06. That was a good night! That is a memory forever etched in my heart. A night just the 2 of us having fun, joking around, he was so determined then. To have just 2 seconds of a moment like that right now - I'd do anything. . . . .

Missing my Zachary more than I could ever put words to -

Nikki - Mom to Teen Wonder and Princess Kylee

I came across this entry from last year 2/4/06 - it has some good funny memories - so I thought I'd share it again . . .

Saturday, February 4, 2006 9:15 AM CST

Hey Aunt Mandi - Tell Uncle Tim it was Springfield NOT St. Louis :-)

We surprised Zach and took him to his favorite place to eat - with him eating now - Smokey Bones - along with his best friend Kris. Zach's favorite thing is their Cinn. Apples - so he ordered 2 sides of that! Also Zach & Kris wanted to go shopping - so we stopped by White Oaks Mall. Kris is such a good friend - he pushed Zach in his chair and when Zach said he had to go pee - Kris gave Zach a speedy ride and ran to the bathrooms. You should have seen the smile on Zach :-) But, the smile on his face on the way back from the bathrooms - Of course you can probably guess why . . . 2 teenage boys on their own - Hot Girls - !! I got to hear just how hot they were :-)

Well, Zach's combination of all his drugs with the continuous drip & demand - Zach is much more comfortable. He is finally sleeping!!! You would think as much drugs as he was on before he would of slept - but, I guess his pain was so bad that he couldn't sleep. As soon as they started adding the different drugs he is much more comfortable. He sleeps about 90f the day - but as long as he is comfortable that's what matters.

Well, Zach's friend Kris is up and hungary :-) What am I saying . . . Kris is always hungary and also the first one to say ooh I lost 3 lbs.

I thought I would share a little about Zach - to those that know him from the net - Zach hasn't been able to control much in his life - the things he can control - ohh boy watch out - because that he does and does it well! Here's an example - he wanted to eat breakfast yesterday after he awoke - well about 1:00 p.m. not too many places serves breakfast - so, off to Ernies we went - Zach ordered - white toast not sliced - buttered - but not soggy - fried egg hard - but the yolk a little mushy - with american cheese slice melted on top - not shredded cheese - bacon - crispy - about 4 slices and no water - I brought in my own bottle of Avian water - I just had a smile on my face as the waitress was frantically writing the instructions - Zach got so mad at me for laughing - I'm used to those strict instructions on how Zachary wants his stuff to be served - it's weird how I'm just so used to that and I love to cater to his needs - then when an outsider waits on my son - I'm sure they are thinking - wow - very high maintenance - but hey - I love it :-)

Thanks for everyone's prayers and support!! It means so much and is so encouraging to here how Zach has touched your lives. Thanks Alyssa for your e-mail!

Tuesday, January 9, 2007 9:25 AM CST

Yesterday I was picturing Zachary going to High School and Kris and him having all kinds of fun being Freshmen. I could just see it - the two of them making plans who's going to drive first, what cars can they talk their parents into and talking to girls all the time. Of course, Kris still has Holly as his girlfriend, but . . . Zach being Zach talking to girls - - - never giving up.

In these Zachary is always all better and normal and just having the time of his life being a kid - being Kris's best friend, and by this time Zachary wouldn't be as close to me as he was because - hey, I'm his mom - teenagers need their friends more than their parents. :-) I wouldn't care - all that would matter is he got a chance at a normal life. Sometimes forcing myself to know that he is in heaven and none of that even matters to him - he is having a better time there and nothing on this earth even comes close to what kind of parties he has in heaven . . . it's so hard. I want to just be content and happy that he's there and we'll be together again . . . the feeling of meerly existing now - just going through the motions of getting up and going to work - it's like I'm stuck in the side world and I can't find my way to "Life" again. I can't dig myself out and it seems that I'm getting deeper instead of closer to getting out.

I try to give Kylee her time now - it's her time to be spoiled. I love her so - but, I think she's so full of anger at me for all the time that I had to give to Zachary for 9 years. I'd do anything for her. I want more than anything to establish the kind of relationship that I had with Zachary with her. I don't want her to take his place, I just want to be close to her - especially before those teenage years hit. It's so important to me that she gets rid of this . . . praying that her counceling will have a breakthru.

Just venting - I used to do this with Zachary - - - with John always at work and Kylee at school - there's no one here to listen. Zachary was always at my side.

Mom to Teen Wonder and Princess Kylee

Saturday, January 6, 2007 10:59 PM CST

As I drove home this evening from work - something that Zachary did for me always makes me feel so proud of who my son was and just wanted to share the moment with you. I've shared it before, but I didn't share the circumstances during the time or go into detail.

A couple weeks before Zachary went to heaven it was Mother's Day. By May 2006 Zachary was using oxygen around the clock. May 4th Zachary asked John to take him shopping - he wanted to pick out a gift for me for Mother's Day. John packed 2 oxygen tanks - linked them together because of Zach's great need of oxygen at a faster rate. Zachary picked 3 cards with a gift to go with each card all on his own and with his own money. May 12th Zachary had a horrible day as the day progressed he became very oxygen hungary and very uncomfortable. He sat up in the recliner and said "Mom, I'm ready for heaven now". I still melt every time I think of that moment - for several reasons. The main problem at hand was not enough oxygen. After we carried him out to the van to take him to the hospital - he made John go in to get something (secretly). After we got to the hospital and got Zachary comfortable - later that night he secretly asked John to get mom's gifts and cards. He sat up in his bed with a huge smile on his face and one by one handed me my gifts and cards in the order he thought best. I put on one of the updates that it was my best Mother's Day - - - wierd - in some ways it truly was my best because it was the last with my beatiful son Zachary. As I read each card and opened my gifts - knowing that he went to each shop in the condition he was it - yet, he never complained and didn't think anything of it. He never thought of himself. I miss him so!

Love you Zachary and miss you every second!

Mom

Thursday, January 4, 2007 8:23 AM CST

I used to share some Zachary stories - it's been awhile since I've shared my Zachary stories - they always put a smile on my face . . .

Zachary was around five - no hair - sitting up in the front seat of my car strapped in a booster seat so he was about the same height looking at me (kids being in the front seat wasn't as stricked in 1997 as they are now). I had decided that I was going to start weight watchers - because I started to put on the pounds being in the hospital room with him (no exercise and eating out of stress). I said well Zachary mommy is craving some fried chicken and I start weight watchers tomorrow so lets go indulge ourselves - lets go get some fried chicken and mashed potatoes. Zach looked at me with his crazy face - eyes squinting and with his sarcastic come back - "That is just that much more weight you will have to loose!". I know - I told him to shut up and he was just too smart for his own good. HA HA :-) Funny thing is - I don't remember if I ended up getting my fried chicken. I just remember his scarcastic come back!

That moment always puts a smile on my face when I think about it. That was Zachary. He was much more than my son - he was my best friend. He was the one person I was with every moment - until John Zachary had become my little man in my life. He took such great care of Kylee and myself. He was Mr. Fixit when something was broken - he would come and just say here give it to me - and about an hour later it was fixed. He'd take it apart . . . I don't know how - he was just a little boy - but God gave him a gift to be able to take care of his mom and sister. When John came into our lives - Zachary was given back the role of a child and was able to be a kid. Sometimes his feelings would get hurt - same with John - they both would step on each others toes sometimes - but, they loved each other. Zachary was so good about being able to tell how I was feeling just looking at me. He knew what I needed to hear and would always tell me that he loved me and would hug me at least 3 times a day. At the end - more like 100 times a day. Something so simple - yet the meaning and difference it made - such a huge impact. I love him so and miss him more than words could even explain.

I promise Zachary - mommy will make you proud.

Mom

Sunday, December 31, 2006 5:17 PM CST

Happy New Year!

I think of last year - Zach made sure we had a New Year's Party at our house with everyone spending the night. As hard as Christmas was this year I decided for John and I to go out of town use a couple of our free nights and go to St. Louis together and enjoy it just us. Last night we went to our favorites - The Melting Pot in St. Louis. We donated extra $ to St. Jude and we got a free St. Jude calendar. It was a very good time - we recommend it if you've never been. Then today we went to The Blue Owl Restaraunt (it was featured on the Food Network) awesome awesome food!!!

My favorite part so far - my dreams last night were filled with Zachary in them. He was with us on our trip and I loved every minute and I couldn't take my eyes off of him - he was all better. Even in huge crowds my eyes never left him and I had to take him to St. Jude to show off my Zachary - because he was all better in my dreams.

Thanks for everyone's continued support and prayers! It continues to be extremely hard and just learning to cope without my Zachary for the time being until we are together again.

Nikki - Mom to Teen Wonder & Princess Kylee

Saturday, December 23, 2006 4:51 PM CST

Only 1 1/2 days before Christmas . . .

I had my family over last night to have some extra family time. We always get together for Christmas Eve and Christmas - but, it's always nice to hang out with my family and tell each other Zach stories. We all watched Zach's video footage from last years Christmas - it was a surprise to find a few months ago. He secretly did it for me to find - he put the video cameral on the tripod and waited till we were done opening presents so, the tree was bare underneath - Zach stated well, there's no more presents but, I have one more - - - he starts blowing kisses, dancing, singing, making us all laugh - then it turned into crying - how we all miss that goofy boy - my Zachary - always putting a smile on everyone's face.

Kris (Zach's best bud) was also here to hang out. It's been awhile since we all got together. It was really nice. Kris brought over some deer meat - Zach would be wanting to eat some of that! :-)

Zach's friend, Chassity, earned her angel wings on Monday. I know it helped reading all the guestbook entries. If you could, sign Chassity's book - her mom Carrie I'm sure needs some encouraging words.

Love you guys!! Merry Christmas!! Thanks for all your support this year!

The true meaning of Christmas - this year we are just that much more thankful for God's gift of Jesus. Because of Jesus our son Zachary is whole again - completely healed!

Nikki - Mom to Teen Wonder and Princess Kylee

Tuesday, December 19, 2006 8:18 AM CST

Every year I buy Christmas cards and every year . . . if they get sent they are just in time. Why do I do that??? Zach got after me last year because we spent so much time (Zach of course was helping) picking out the Perfect Disney World Christmas card and we still have them!!

When I was told that during the Christmas season it is extremely hard - I couldn't comprehend how it was going to get harder. About 2 weeks ago it hit me and it's taking so much energy to pretend to be happy for Kylee and I can't fool John - he knows how much I'm hurting.

We've spent our nights making gingerbread houses, Christmas cookies, and playing dominos (while listening to Christmas music). Dominos is Kylee's favorite game right now. So, it does look like on the outside that we are enjoying this holiday. For me, on the inside, I have a longing every second to be with my Zachary - a void that won't be filled until we meet again in heaven. Not one moment goes by and I'm not thinking of Zachary and wondering what would Zachary be doing right now. What would Zachary have me be doing for him. He was never a burden to me and I just pray every day that he knew that I never thought of him as a burden. I would of done whatever for the rest of my life to keep him here if I could. He brought so much joy to my life.

LOVE YOU MY ZACHARY!! MISSING YOU! HOPE YOU ARE HAVING A FUN CHRISTMAS UP IN HEAVEN!

Mom

Thursday, December 14, 2006 4:58 PM CST

It's one of those special nights for Christmas - - - and Zachary is not with us. I don't think I've put on this web site - Kylee plays the cello and Zachary was also in the orchestra and played the double bass. He actually placed 1st in a competition. He was good at everything he did. So, every Christmas there is a Christmas program for orchestra. Zachary and Kylee played in it - I remember like it was yesterday - me sitting out in the audience with the biggest proudest smile - - -

There is such a longing for just a glimpse to relive one of those moments. Tonight Kylee will be playing.

I've asked her several times what is her number 1 present she wants from santa - her reply all I want is my bubby from heaven. It's the only thing I want so surly Santa will give me that wish. I listened to Zach's messages on his cell phone - we cracked the password finally - one of the messages it was Kylee telling Zachary to ask Jesus if he could come back. She told Zachary to listen to her instructions to come back to be with us for Christmas. She told him to tell Jesus the instructions and to please tell Jesus we need Zachary more here at home.

I pray that she won't be disappointed. I know I've told her counselor how she's been doing - and I know they've talked about it and that it's not a realistic wish. She don't care - because that is her wish.

I know this Christmas is already extrememly hard - we all miss Zachary. One thing - we found a Christmas present from Zachary - a message he recorded on the video camera. He told us how much he loved us and blew us a whole lota kisses and told us that he loves sosososo MUCH and he knew that we loved him sosososo much.

MISS YOU MY SON!

Mom

Tuesday, December 5, 2006 7:53 AM CST

I have been so blessed this morning with a few of the guest book sign ins.

First, I want to thank Judy, Jen and Mary Ann.

The greatest gift to a mom that has lost their child is knowing that the child is not forgotten and is still making a difference even though Zachary is no longer here on this earth. Knowing that Zachary has made differences in peoples lives other than his immediate family and best friends brings so much - makes me just that much more thankful for my God given gift - Zachary. Zachary taught me so much and he is still touching other peoples lives.

When I say that I was blessed to read that he is touching your lives - I truly mean it. I have no way in describing the gratitude that I had when I read those guest book entries. You too have made a difference in my life.

I may have tears coming down, but it's a good feeling - knowing that Zach's journey made a difference in someones life.

Nikki - Mom to Teen Wonder & Princess Kylee

Sunday, December 3, 2006 11:24 AM CST

Friday was a huge snow storm here. We were snowed in. It took John, Kylee and I to shovel for 4 hours yesterday to dig us out. Talk about CABIN FEVER . . .

As I was out there shoveling so many memories were playing in my head. Last year during this time Zachary was using oxygen at night and he still had a hard time catching his breath throughout the day. So, when Zachary would go out I would make him put a mask over his face so the brisk cold wouldn't take his breath away. I just started laughing about how Zachary would never complain, but we all knew he put it on in my presence and as soon as he stepped out of my presence off the mask went. I tried. I was just loving my son and trying to keep him here with me as long as God would let me have him. Zachary had something else in mind - trying to be as normal as he could for as long as he could. He never wanted anyones pity and he didn't like people looking at him like something was wrong with him. All Zach wanted was to be normal.

It hurts so much sometimes . . .

As I go to sleep every night - I just thank God for every moment that I had with my son . . . what a special gift. And thank him for my beautiful daughter. Then I just ask God to bring Zach back at least in my dreams. LOVE YOU MY SON!!

MISSING YOU!!!!

Mom

Monday, November 27, 2006 10:42 AM CST

I've tried putting an update on here for a few days now. I log on and I my words just run together and I erase it and walk away.

Above are pictures for Disney World during this time last year. Notice the santa Goofy ears Zachary has on . . . that is my tree topper for my tree in the living room. It is the best tree topper. Right underneath it is an ornament that says "Merry Christmas from Heaven" - then an angel ornament that says Zachary. I have all his ornaments on there along with Kylee's. It looks so cute. I'll have to take a picture and put it up on the site with the 3 of us around it.

One day at a time for sure. It is so empty here. I put up all our Christmas stuff for Kylee. I want her to have a good Christmas. I don't want her to have bad memories of this Christmas.

I try every second to think of how Zachary is all better. This is his first Christmas since 1996 that he doesn't have to get treatments or testing during this time of year. He is in remission FOREVER. I can just picture him running around with that huge grin on his face with NO WORRIES. I'm so happy for him in that perspective. I'll never forget that moment that Zachary asked me what it's like to have a normal life. Zachary will never know - Now he walks the gold streets with Jesus without a single worry.

I love you my dear Zachary, My Teen Wonder! LOVE YOU and MISS YOU BUNCHES!! So does all your friends! You were such a blessing to everyone!

Mom

Monday, November 20, 2006 9:53 AM CST

The closer it gets to Thanksgiving the harder it is to come to the realization that Zachary won't be home for Christmas.

Last year during this time we were getting our summer stuff packed and ready to head to Disney World. That was our Christmas - I even got Zachary to sit on Santa's lap. As he shuffled his away from Santa he looked up at me and reminded me that it was the LAST time I was gonna get him on Santa's Lap :-) I'll have to scan pics of every year Zach and Kylee sitting on Santa's lap.

The raw feeling of loosing Zachary - - - it just keeps getting harder. NOT at all easier with time. All the different memories - that's what I'm left to hold on to. Some days I'm full of anger and others just tears. No matter what - My Zachary won't be coming through those doors and yelling mom, I'm home. Some days I want it so bad I just imagine him coming home and I sit down to talk with him. I know I've lost it - - -

2004, Zachary's first time Deer Hunting - he got 3 deer. What a hunter! He was so proud that winter - dinner time and he said you can make deer chili or deer taco's for supper mom. Deer taco's was Zach's favorite.

LOVE YOU LOVE YOU LOVE YOU!!

MISSING YOU EVERY SECOND OF EVERY DAY UNTIL WE ARE TOGETHER AGAIN!

MOM

Friday, November 17, 2006 11:36 AM CST

Christmas Shopping . . . . a task that Zachary made so hard for me :-) - - - you know I loved it that way. This year, he already made it clear for me, he wanted a Playstation 3 hmmmmm, would I be one of those waiting in line to get one today? The answer - Most definetely! Anything to put a smile on my Zachary's face. He was so excited about that Playstation 3. He talked me into buying 2 or 5 years of that magazing subscription - What am I going to do with it??? He still puts a smile on my face and he's not even here. How I'm missing my Teen Wonder! Also, today is shotgun Deer Hunting season. He couldn't wait for this day to come. A Playstation 3 & Deer Hunting all in one day. Reminder - Zachary wasn't spoiled! . . . or ? Just kidding Zachary!

His FOID card came in a week after he went to heaven. Playstation 3 came out almost 6 months after him being gone. My heart breaks today - every second without you here my Zachary. LOVE YOU LOVE YOU LOVE YOU!!!!

I can just imaging how many smiles would be on your face today if you were here - - - I would be seeing that. I know you have alot more smiles in heaven - I just have to wait to see that.

MISSING YOU MORE THAN EVER!

Mom

Tuesday, November 14, 2006 11:09 AM CST

Zachary - thank you so much for being in my dreams!!! Those are my favorite nights. I woke up and thought for a moment that I was going in to wake you up and see my little 4 year old son so full of life. I honestly felt like it was 1996. Then I seen the commercial for Sun Maid Raisens - and I thought you were going to come in and ask for some mama's. I closed my eyes and remembered being in the kitchen and you pointing up at the cabinets asking for some mama's - I had NO idea what you wanted, so I picked you up opened the cabinets and you snatched out a box of raisens. You looked at me with a huge smile and said mama's. You're so goofy - you thought that was me on that box of raisens - so you called them mama's. A memory that I will NEVER forget. So now, that silly commercial comes on and I'm the only one in the room with tears . . . MISSING YOU!!!

Some days you are 13 in my mind and others only 2. I relive all the memories in my heart over and over. I can't stand the thought of you not being part of my future and only part of my past. My son - I play the memories of you all the time every second of my life and will continue until we are together again.

LOVE YOU BUNCHES!!

Mom

Thursday, November 9, 2006 7:49 AM CST

Tomorrow is my sister Mandi's Birthday (her 30th - she's my little sister).

Plus, I am going into look at Zachary's stone and to approve the front. I've had to talk myself into going to see it and approve it. The truth is, sometimes I like to just pretend and do what Zachary told me to do - pretend that he is away at UofI. It does help . . . sometimes. Really, the tears come without warning. I'll be reading something and I don't know if it refreshes a memory - and I just start crying.

With Thanksgiving just around the corner - it seems to get harder. I've been doing some positive things with my pain. I'll have to share with you later on just exactly what. I'm doing a lot better, cause I am learning to turn my pain into positives. I heard the other day that "I will use my past to fuel my future" - that is so true. I'm using Zach's courage and strength to be my courage and strength. My Zachary taught me so much and I am going to show him just everything he taught me. I'm going to "walk the talk" for my son.

I love you so much my dear Zachary! I am trying for you, Kylee and John to reidentify my roles in life. MISSING YOU!

Nikki - Mom to Teen Wonder and Drama Queen Kylee

Sunday, November 5, 2006 10:59 PM CST

My Son Lives in Paradise

The dust has settled on the things
That I have stored away
A favorite toy, for little boy
A jar of dried out clay.

A photograph when you were young
Sits quietly on the shelf
Thoughts of you come drifting back
I just can�t help myself.

A drawing that you made for me
When you were very small
Is framed within this heart of mine
And hangs upon the wall.

A scrapbook lies within the room
Where you once laid your head
Your favorite book, a model car
The pillow on your bed.

I miss you coming in from school
�Hey mom, it�s me, I�m home�
I miss the little words and hugs
The special times we�ve known.

A part of me just disappeared
The day you went away
An empty space now fills my heart
There are no words to say.

A closet filled with memories
Of happy days gone by
A baseball cap and souvenir
Why did you have to die?

The trophies that you won at school
Stand proudly on display
Your many friends can�t understand
Why God called you away.

I hear your voice within the halls
It echoes in the night
I see you in the evening mist
And in the morning light.

So many things you left behind
Are now a memory
But little arms that held me tight
Will always stay with me.

An empty space now fills my heart
My boy, my child, my son
You�ve gone into another world
Where golden dreams are spun.

I do not know the answers
It�s not for me to know
But I will know the truth one day
Just why you had to go.

My turn will come to leave this world
I�ll gaze into your eyes
God�s perfect plan will be revealed
Up there in paradise.

Author/Written By:
Marilyn Ferguson
�2005

Zachary,

Mommy can not wait to gaze into those beautiful eyes of yours. I can tell if you have a smile on your face just looking into your eyes. Somehow your eyes smiled! LOVE YOU AND MISS YOU BUNCHES!!!!!!!!

Zachary . . . mom is sooooo longing to just hold you and have just a little hang out session holding you and hear you tell me you love me. John left for California this morning for work. He probably has a lot of memories coming back to him while he's there - you and Kris - singing to songs that you had on your laptop - pillow fights - shopping for your girlfriends that you had at that time. I remember you taking your time finding the perfect gift for Gabi - making that bracelet. You were such a joy to be around. It's just so empty without you here. I would do anything for just one second of holding you. LOVE YOU! Those two words just doesn't do justice to the love that I have for you my Zachary. You loved to cuddle and let everyone know just how loved they were. Zachary, you are so loved and so missed - I just am having such a hard time without you my son -

***In Memory of Zachary - Zach's First Christmas in Heaven - I would like to fill Zach's Giving Tree up with lots and lots of ornaments. Each ornament represents $5 for Neuroblastoma Research*** Here's the website: http://www.lunchforlife.org/giving_tree_children.aspx

Click on Zachary Allen - All money goes to Neuroblastoma - help save lives of future children!

Thanks in advance! Nikki

Friday, November 3, 2006 9:42 AM CST

One of the more difficult days was Wednesday. I had to update my CPR card - the instructor explaining what you are really doing during CPR - breathing for that person and keeping the circulation to the organs going so that person doesn't die - - -

Without warning I just started crying. Thinking how my pain that I am experiencing now - if I would of breathed for Zachary the rest of my entire life if I could lay right next to him and hold him. Never did I ever foresee this pain being so hard. I think of how I hurt for Zachary to know that he had to endure so much pain . . . I just wanted him to be all better here. People say that he's better where he is at. I know it's just that people are at a loss for words to try and comfort the mom. I just want my Zachary here and I would sacrafice ANYTHING to have that.

Kylee wrote Santa a letter last night - all I want is my brother back from heven - that is how she spelled heaven - she said that would be her favoritest Christmas to walk out Christmas morning and Zachary sitting next to the tree with his goofy ears on and a smile - - - we all agree - that would be all of our favoritest Christmas. How I wish that would come true every single second of the rest of my life. LOVE and MISS YOU MY ZACHARY!!!!!!!!!!!!!!! LOVE YOU PLUS 1!

MOM

I thought I'd share something - my brother's youngest son, Connor - Connor and Zachary are alot alike and close - I watched Connor on Monday and he stated Zachary's with Jesus Aunt Nikki - but, what is he doing with Jesus? I told him that he's probably helping Jesus prepare a special place for us up there with him. Connor asked - Aunt Nikki can Zachary make me a flashlight house in heaven? Sure - whatever you want in heaven - Zachary will make sure that Jesus will have is all ready for all of us Allen's :-)! Ok Aunt Nikki - we visited Zachary at his angel garden and Connor reminded Zachary that he would like a flashlight house and that he loved him. Connor is so much like Zachary - - - it's really wierd.

Tuesday, October 31, 2006 9:49 AM CST

Happy Halloween Zachary!!!

My love for you Zachary is so great! I've been allowing the my love for you destroy my days and I know you would be getting after me if you were here. I am trying so hard to be a good mom to Kylee and wife to John. I've been failing them lately with my broken heart. It's wierd - I'll think of a memory and if it has details and I have a smile I know it is a memory before you went to heaven. If it is a memory with very little details and I don't have a smile - I know it's after you went to heaven. My life has almost stopped when you left this earth. I have such a hard time to just "live" without you here. So, I promise that starting today I will try so hard to start living and start putting a smile on Kylee and John's face like I used to for you. I love them just as much - it's just not right without you. I know - you've already forgiven me and you've told me that you love me with your whole heart. I love you too my Zachary with my whole heart.

In fact, I'm going to go do something special for John and Kylee tonight. I'm working tonight, but I'll leave something for them. Well, I've been using your stuff to cheer up the residents where I work. You would love where I work. I have a lot of fun and helping them with everything. It's a perfect job for me.

LOVE YOU BUNCHES & MISSING YOU EVERY SINGLE SECOND - but, I'm going to try and live life with Kylee and John and be happy. It's just really hard.

Mom

Wednesday, October 25, 2006 3:16 PM CDT

I gotta tell ya, trying to get someone in my family to understand the pain that I experience every single second is impossible. The pain that I have in missing Zachary is so real and is getting worse with each passing second. I think of Zachary every moment.

I'm glad that I've made the decision to work in the field that I am currently in. It definetely is not a field to go in to make money, but with my circumstances - it's perfect. I just needed to be so busy physically to keep from thinking of Zachary every second. An office job - that just gives me time to sit and think of Zachary. This way I am so busy - Plus they get me to smile.

Kylee - she leaves notes on her bedroom door for her bubby. Telling Zachary how much she loves him and misses him. The picture above with the pumpkin - they both enjoyed carving that pumkin and roasting the seeds. Zachary got a recipe from the internet and he enjoyed eating the seeds.

I was going through a box that Zachary had in his closet last week. He was such a pack rat! :-) He put things in there that was special to him. His grandpa had given him about $15 in half dollar coins when he was 4 - he had them in that box - never spent them. Then, he had special coins that he had asked me to order off of TV - which I did :-) Remember - Zachary wasn't spoiled :-)! Only I couldn't find his silver that he had gotten from a silent auction that the proceeds went to St. Jude. He was so excited - he thought he won what he had secretly bid on - all well, the money went to a great cause.

I just keep praying everyday - that Zachary's extaordinary character has touched someone else and makes a difference each day - even Zachary isn't physically here. His courage and determination in everything Zachary did will help someone and will always be remembered. The examples Zachary set - will remind us of what an inspiring son Zachary was.

Missing you my dear Zachary soooooooooooooooo much!!! LOVE YOU!

Mom

Monday, October 23, 2006 8:18 AM CDT

I am working now . . . in a group home. This is a complete change for me. I have a business degree - which means I've always worked in an office. Because of Zachary - my heart needs a rewarding kind of job - and it has a lot of love to give to people that need it. It's sad - because most of the people in this field - thier heart isn't in it. To most of them - it's their home and I've become part of their family life. I'll let you know in a few weeks if I still feel that way (:-)! just kidding)

I went to the Covered Bridge Festival with John's family - we had a nice time. Very pretty with all the fall leaves.

I was telling John's sister how Zachary told me that when he goes to heaven that he'll talk to me in my dreams. I haven't talked with Zachary in my dreams but twice - and it's been a few months. Well, Saturday night - I had the most amazing dream. My whole family was sitting at a very long dinner table - including my sisters and brothers and mom & dad - and Zachary came walking in with a huge smile on his face and looked in perfect health. He sat down and we all got up to kiss him, hug him and then I quickly ran to get ALL my cameras. I knew he was an angel - so I asked him if I would be able to see him in the video recording and pictures - he said yes - I was just so excited - Zachary told me - mom . . . I'm always sitting down and eating dinner with you - you just don't look hard enough - but, I'm there. You're seeing me this time because you are finally learning patience - (a lesson Zachary always tried to teach me) - I was worried he was going to leave right away - he said don't worry mom - I'm always here. I told him to never leave me again. I don't want live one more day without him here and enjoying every minute with us. Then - my dream was over.

But, there is a valuable lesson in that dream. My son is always with me - I just don't look hard enough to see him and appreciate the small signs he leaves to remind me that he never left me - I just can't see him.

LOVE YOU ZACHARY! THANK YOU SO MUCH FOR TALKING WITH ME IN MY DREAMS!

Zach and Kylee's Mom - Nikki

Thursday, October 12, 2006 9:37 AM CDT

My Dear Zachary-

I just really need to talk to you - I'm missing that so so much.

You should hold Spike - he is getting so big - John & I have been taking extra good care of him for you. I actually enjoy the bearded dragon :-) You would be so surprised - because I actually pick him up the way you taught me and he still tries to get away from me. He really enjoyed being in your hands - your one hand was always so warm (just right for Spike).

Now, the dogs - well, they are being onry as ever! Spanky misses you! Jasper - well, he tries to boss Spanky around! They are just like two brothers :-)!

Kylee - she's catching up with you in height! She is so tall! I've had to buy her 3 bigger sizes already since summer. She is just getting so tall. I just am so amazed at how big she is getting. You would be proud of her though - she is trying so hard in school this year and she is behaving! Sometimes she yells but, John & I are trying to get that to stop!

Halloween - it's almost here. Last year you hated the costume I got for you. You kept telling me that it made you look like a mommas boy. Well, just a little secret between me and you - I'm so thankful that you were my little mommas boy :-) I know, you weren't spoiled :-)

Which means Christmas is just around the corner! I got you a special christmas tree ornament from Spoon River Drive like I do every year. This year is says "(2006 is in a heart that an Angel is holding) Zachary's 1st Christmas with Jesus". I wonder what kind of celebration you will be having with Jesus. I know don't rub it in . . . it doesn't compare to the kind we have. and you're still not spoiled :-)?! and you're not even missing this old dump of a place called earth!

This year I'm going to make the one Christmas tree in the living room - Zachary with Family tree. Lots of pictures with you & Kylee and the rest of the family. It's really different without you here! So different at family gatherings. Thanks Zachary for helping us understand that family is so important. Because of you - we are so much closer!! LOVE YOU BUNCHES!

MISSING YOU EVERY SECOND OF EVERY DAY!

Mom

The Fern and the Bamboo

One day I decided to quit...I quit my job, my relationship, my
spirituality.... I wanted to quit my life. I went to the woods to have
one last talk with God.

"God", I said. "Can you give me one good reason not to quit?"

His answer surprised me.

"Look around", He said. "Do you see the fern and the bamboo?"

"Yes", I replied.

"When I planted the fern and the bamboo seeds, I took very good care of
them. I gave them light. I gave them water. The fern quickly grew from
the earth. Its brilliant green covered the floor. Yet nothing came from the bamboo seed. But I did not quit on the bamboo.

In the second year the fern grew more vibrant and plentiful. And again,
nothing came from the bamboo seed. But I did not quit on the bamboo.

"In year three there was still nothing from the bamboo seed. But I would not quit. The same in year four.

"Then in the fifth year, a tiny sprout emerged from the earth. Compared
to the fern, it was seemingly small and insignificant.

But just six months later, the bamboo rose to over 100 feet tall. It had spent the five years growing roots. Those roots made it strong and gave it what it needed to survive. I would not give any of my creations a challenge it could not handle.

"Did you know, my child, that all this time you have been struggling,
you have actually been growing roots? I would not quit on the bamboo. I will never quit on you.

"Don't compare yourself to others." He said. "The bamboo had a different purpose than the fern. Yet they both make the forest beautiful.

"Your time will come", God said to me. "You will rise high"

"How high should I rise?" I asked.

"How high will the bamboo rise?" He asked in return.

"As high as it can?" I questioned

"Yes." He said, "Give me glory by rising as high as you can."

I left the forest, realizing that God will never give up on me. And He
will never give up on you.

Never regret a day in your life.

Good days give you happiness; bad days give you experiences; both are
essential to life.

--Author Unknown

RISING HIGH!

Saturday, October 7, 2006 6:41 PM CDT

Today I spent with my parents on Spoon River Drive - one of Zachary's favorites. Zachary went last year with John & I with his gel filled wheel chair - that was so comfortable for him - plus he has all his quilts :-). It was so hard - We went to London Mills - they make Apple Butter in this one spot every year (today I stood there while all the memories felt like it was just yesterday) - last year Zach got up out of his wheel chair and stood there talking with the guy that was turning it over this big huge fire pit for such a long time. Zachary then walked over and sat in his chair and stated mom - you need to go get some of that butter. (he ate toast with apple butter until it was gone) As we walked off after tasting it - he had me wheel him over to the guy making it and Zachary said thank you with a smile. I think back - he talked to everyone that year. He's always been on a mission - It's like he always knew - God had a mission for him to do - he always told me that he talked to God all the time and he could hear him. He said that he was going to be a mighty man of God and there have been other times when pastors have told me that he is going to be a mighty man of God and was going to be able to hear God's voice at a young age. He also would remind me that God put him in remission 3 different times and he knew he was going to be healed this time around. He had such faith such determination - he said once - mom don't worry - you can't worry today - today we live big - don't think about tomorrow. I even have a tape of someone praying over Zachary and it said just that. The pastor even went on to tell Zachary that God wants him to try basketball - even Zachary feels he's not real good - that if you just try basketball - he's a winner. A winner indeed - he strapped on the special spine brace that I had made in Memphis - never complained and would go out of the court and play with his whole heart. Amazing feeling that was - my son - out with the team - being part of something normal - being part of something so many take for granted. There were so many times I would be out waiting for Zachary after his practices and thanking God that I was out there with all the other moms - I always had a smile on my face. In my eyes - Zachary was the best player - at everything - from basketball, patient, son, brother . . .

Zachary was on a mission for God - let his light shine every step of the way - making me so very proud -

LOVE YOU and MISS YOU my #1 son!!!!!!

Mom

Sunday, October 1, 2006 9:47 PM CDT

This has been an EXTREMELY emotional & hard week. Really no words to describe the gut wrenching pain that is involved living day to day without my son. So far, the old saying time makes it better - that is so so so WRONG. It is getting harder and harder. Our circumstances right now doesn't help. Having to deal with Zachary's biological dad that was NEVER there is trying to get part of Zachary's estate. On top of him only paying $25.00 in child support for Zachary's almost 14 years of living. I am heart broken. I would have given anything for Zachary's biological dad to step up and be a responsible father - - - Zachary's dream of having a father came true when John came into Zachary's life. I just thank God every day that Zachary was able to be a child the last few years of his life. He didn't have to be the man of the house. I need that reassurance - be reminded that God does answer prayers and he does give you your heart's desires.

I've been sitting with Zachary at his grave site. Talking with him - blowing him kisses - only wishing that I could hold him just one more time. Also, hoping that our conversations wouldn't be just one sided - I need his input on what he thinks I should do about everything. Zachary was so helpful in thinking things out and seeing things in a diffent light. Zachary is so amazing - if only I could repay him with my life. He deserves to live life - - - LIVE BIG - - - Zach always knew how to "LIVE BIG" Zachary - Mom would do anything for you - anything - anything to put that wonderful smile on your face. Picturing you walking with Jesus - with that smile on your face - - - I bet you're playing basketball, cruising with Mickey Mouse in Paradise, doing all that the Neuroblastoma took away from you on this earth. LOVE YOU LOVE YOU LOVE YOU!!!!!!!!!!!!!!!!!

xoxoxoxoxxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxo

Nikki - Mom to Kylee & Zachary

Thursday, September 28, 2006 11:29 AM CDT

First I want to tell Kristopher how thankful I am that he keeps Zachary alive in his memories!

After I read Mary Ann's update - I had happy tears! Zachary went to school today - High School! Kris wore his Teen Wonder shirt to school. Thanks Vaupels!

Last night I had happy tears too. I bought a frame for 2 5 x 7's and it records a voice message, well, John found it last night (I completely forgot about it) - you press the button to hear the message - well my Zachary recorded a message on both - the one says I'm dead sexy . . . I love you mom - this is kinda funny isn't . . .

The other has a picture that it came with - people we don't know and he left a funny message on it pretending to be the little girl in the black dress - - - first I started laughing and then it turned to tears - Kylee stopped what she was doing because she heard Zach's voice - came in and cried - held on to me and said that she missed him sooooooo much. I want Zachary back mom. Yeah - I agree - I want Zachary back too - life just isn't the same. He always had me laughing at something.

Nikki - Zach & Kylee's Mom

Sunday, September 24, 2006 1:29 PM CDT

This morning at church - like all Sunday mornings people got up to tell their praise reports. Our pastor was telling us how thankful of his daughters healing and without any warning I just had tears coming down my face - I wanted to stop but they just kept coming. I wanted to get up and tell everyone how my son Zachary was healed on this earth and is a freshman this year. I wanted to have that praise report in the worst way - - - - - -

I wanted to be able to get up and tell everyone that Zachary got his miracle here on this earth and is enjoying his freshman year of high school. If anyone deserved to be healed here - he did. I can just picture him hanging out with his friends (Kris) - giving them advice - and teaching everyone how life is such a gift. I miss that - I miss his advise - he taught me so much and I long to hear his voice explaining things to me from his perspective. He always had a different perspecitive and I loved that. I was able to look at things in a whole new way because of him. I was given a new life when he entered my world.

Today in my world I'm still lost. When Zachary died - my life that I knew and loved died too. For me, time is still kinda standing still in a sense. I know I am going on - living life with lessons that my son taught me. I'm still Kylee's mom and John's wife. Until you go through this - it's hard to understand. I have to go through a transition - a transition reidentifying myself and who God wants me to be. I have to trust God that everything happened for the best. It's just really hard - I loved Zachary so. I miss him more than words could say. I loved everything about him - God knew what I needed in life and gave me Zachary to learn what I needed to in order to fulfill God's plan for my life. MISSING YOU Zachary!!!!!!

sending xoxoxoxox your way!!!

Mom

Saturday, September 23, 2006 7:57 AM CDT

Hey Zach, Love you bud . . . miss you bunches! and bunches and bunches :-) Your stone came in 2 weeks ago. Uncle Tim is getting you foundation ready for you. He made sure I got the perfect foundation for you - a nice granite one. So, he's making sure that you have the greenest grass at the angel garden and I'm making sure that your stone stands out so everyone knows just how special you are to everyone.

This week has been hard. For several reasons.

I've been thinking of what was Zach's best medicine for him. What gave him energy and smiles and just the greatest joy? I don't have to even think about it - His best friend Kris. Kris, I want to tell you how often I think of you guys hanging out and how grateful he had you in his life. Thanks Kris! You were the best medicine. Zach would be having a terrible week - getting sick, lots of pain and when you would get here - he would get sick but not nearly as much and his pain meds would be cut in half. He asked for them about half the time he would before you would get here. He was so thankful for you and wanted you to know how much you meant to him in that video he made for you.

Also, I want to tell Dave Vaupel how thankful I am for him. When Zachary went to heaven - his body needed to be taken to the funeral home and taken care of. So, Dave (Kris's dad) took Zachary to the funeral home - not someone I didn't know - but Dave took care of him and I'm sure he treated him like his own. Alot of work needed to be done - the cancer had turned Zachary into a Zach that I didn't want anyone to remember him by. He didn't look like Zach his last week. I have one picture of him with his whole class when they came to sing to him the day before he went to heaven (total for that week). I didn't want to remember him like that - he wouldn't want me to remember him that way. He told me at the end to make copies of the one with him having muscles (it's in the photo album). Zach said that he will look like that when he gets to heaven. Perfect in every way.

So, Dave, thank you so much. You have know idea what comfort that gave me that it was you taking care of my Zachary. His body is the only thing left for me to take care of and I would of been so sick thinking if he was with strangers. Thanks Dave - well the whole Vaupel Family!

Forever Zach & Kylee's mom - Nikki

I am putting a book together of Zachary - if anyone has some memories that would like to be added in the book let me know. You can e-mail me with your memory. Thank you so much - this is something that I've been really wanting to do and can't wait to have the finished product!! A Zach Book - :-)

Thank you so much! Nikki

Friday, September 15, 2006 6:46 PM CDT

Something that I've never posted on here, but it is something that my dad told me after Zachary passed away and it helps me alot when I think how I would do anything to bring Zachary back. I know it's my heart talking - I know it's not logical thinking.

Anyway . . . My dad loves to grow unique plants and trees - Zachary and I went to Disney in 2000 for his Birthday. After getting off The Land boat ride at Epcot Zachary stepped into a shop (yeah Zachary was always a sucker to shop in ALL the stores - he loved to shop). They were selling palm trees in a boxed kit. He picked one up and said hey mom, I'm gonna get this for grandpa - I know he will really like it. My dad loved it - he planted it and it was doing good. Well, in 2005 sometime it started not looking so good - so my dad changed the soil - replanted it - talked to it - fed it - babied it - everything he did to try and save it - it didn't do anything - see, my dad kind of made a pack with God - if you save this tree that my granson Zachary got me I know everything will be ok with Zachary - My dad did everything to save that tree - - - Zachary's last week here on this earth the tree had turned completely brown and my dad knew that he wasn't going to be able to save it - well, Zachary passed away May 26, 2006 - that tree came to life. It is green and very much alive. It was God's way of showing my dad that no matter how hard you try and save something - God's plan is the one in control - God saved Zachary and he also made that tree come back to life to show my dad that Zachary is very much alive - he's in heaven now completely healed and no more pain and suffering. We tried everything to save Zachary - we fought till the end - nothing stopped the disease - until God came in and gave Zachary the ultimate healing. Thank you God for my awesome gift you gave me in Zachary and thank you for saving my son.

Guess what Zachary got my dad from Disney during Christmas 2005 - as soon as the plane landed in the airport Zach said, hey mom - when we go to Epcot lets make sure we go to Japan - Grandpa would really like the bonsi trees. So, Zachary had them wrap the box up at the store and he gave that to Grandpa for Christmas.

Nikki - Zach and Kylee's mom

Thursday, September 14, 2006 1:08 AM CDT

I know - it's been one of those nights without sleep. Lately it seems as though I'm having more of sleepless nights than nights with sleep.

Zachary, I remember a year ago we had a talk while snuggling together. You told me that if you were to go to heaven that you would talk to me in my dreams. I had a few and now they've stopped. Am I not being patient enough for you or are you disappointed in how I've been breaking my promise to you? I'm sorry, lately I just haven't been ok with you not here and I know I promised I would be and I'm trying sooooo hard. I went to St. Jude yesterday - I wanted to be in your world as I have missed that so. I've missed our time together . . . I've missed you. I'm so so so sorry . . . I've realized in me wishing you were here - what that is asking of you, You weren't pain free here on this earth - you weren't healed - you didn't have a normal life and God took you back to heaven and made you whole again. I know you are so happy and pain free right now and very much alive - I just can't see you right now. I promise I'm going to try much harder and be patient . . . waiting to hold you again and to kiss you. I posted the picture of me giving you a kiss - a moment that I want to hold on to and just keep reliving that moment over and over. Can you do me just a little favor - come and talk to mommy in my dreams . . . I am missing you and I will show you that I won't break my promise. I will work at being ok and being patient to hold you again my son. I love you love you love you and I wouldn't do anything to make you come back to this awful place and have back the life that you were living in constant pain. I'm so sorry.

Love Your Mommy - sending bunches of kisses and hugs your way!! And learning to be patient - a lesson you never stopped trying to teach me :-)

Sunday, September 10, 2006 11:57 AM CDT

This weekend we've been enjoying one of Zach's favorites - the Marigold Festival. I remember the few occasions that Zachary was not able to enjoy the festival because of being sick - but last year he made sure he went, despite his pain and the fact he had to carry around a couple IV bags.

Yesterday we seen alot of kids that Zachary grew up with - - - only the biggest hurt was that they were looking older and growing up. I got in the van with tears coming down and thinking how Zachary will forever be 13 to me. A reality that I really don't like having.

I do like thinking of how he is just hanging out with Jesus and is completely healed and having so much fun that he isn't even missing us. Thiking of how he is putting a smile on Jesus's face and everyone elses. I bet he is a comedian up there :-)!

I love you my Zachary!! Missing you so much and so is your sister!!

Nikki - Zachary and Kylee's mom

9/11 - Monday 1:30 a.m.

Having a hard time sleeping. Looking at the pictures of Zachary at his graduation ceremony - memories just came flooding in. I seems just like yesterday Zachary sat up in his recliner and said mom - John - I'm ready for heaven now. I melted - the reality - I could tell that Zachary's body was just tired and all I had to do was look at John and we didn't have to say anything we knew - we knew that we were getting ready to experience our worst times yet with Zachary. Our goal - make Zachary comfortable. Zachary asked me if I would be upset with him that he really would like to go into the hospital to get him comfortable. Something I found out after - Zachary's number 1 reason - he didn't want me being his nurse at the end - he wanted me to be his mom. I was told by a counselor that I would feel relieved when he goes to heaven and don't feel guilty about it - it's a normal feeling. The Truth . . . if I had to be Zachary's nurse for a million years - if I had Zachary here with me - I would do it. I wouldn't even need to leave his side - because I would be happy just to be able to look at him and hold him. Even if that meant still being in patient at the hospital - anything - anything - anything - anything - anything to have my Zachary . . . . . . . MISSING YOU MY SON!

Monday, September 4, 2006 6:17 PM CDT

It seems wierd - Kylee is in 5th grade now. She seems to be enjoying it. She's off to a good start. Me, well . . . I've been watching Zach videos frequently. It seems so long since I've held him in my arms.

The video from Disney World during Christmas time ('05) I've enjoyed watching that. Zach started off the day one day and said that he was really tired and you would probably catch him sleeping in the video and posed in his sleeping pose to show you what it would look like as if you've never seen the pose before :-)! ? Anyway, the next morning he was sitting in his wheel chair and called me over and he started talking to the camera and told everyone that if you were watching the video that today you wouldn't be catching him sleep as much - that you would catch him alert and posed with his eyes wide open and of course his smile. And about 5 minutes later I caught his sleeping pose :-) It's just too funny. I miss him - I miss just being able to laugh with him. I love you my Teen Wonder!! Missing you my #1 son!

Nikki - Mom to Zach and Kylee

Tuesday, August 29, 2006 11:14 PM CDT

It's so wierd - I guess the only way I will have to update pictures - is to go through some old ones and scan them and make electronic copies. I'm so used to be able to take pictures of Zachary and update them - and it's just one of those things that it hits you and now I'm longing to hold my Zachary and take some new pictures of him. He would definetly be wiser - He gained wisdom so fast . . . He was so smart and full of knowledge . . . so much understanding . . . . . . . . how I miss that insight he always had about everything.

I shared with someone earlier that one of my favorite videos of Zachary is him explaining to me how to take care of his pets and how it's a "no no" to do certain things. I could watch that over and over. Actually I have been watching them over and over - John's away on business and I have no one telling me - ok Nikki - it's enough. You need a break from crying - you need to be a mom to Kylee and a wife to your husband. It has just been recently that I just feel like climbing in a hole and not coming out for a while. How I long every day to just hear I love you mom with my whole heart or I'd even settle for I know you do mom response and for a bonus Zach's hug -

Actually what I really need to hear from Zachary - is him telling me thanks like he has done several times for taking such good care of him and giving him so much time and love. I need to be reminded that I did everything possible to make him better. I've been really beating myself up - - - I didn't find the right meds. for Zachary - If I just found the right meds. he would be here with me now . . . Even if it cost all the money in the whole world - I would of done it without even giving it a thought - my world. . . it's not the same any more and I have been stuck with a role right now that I don't like. I always protected and cared for others and now - I have no energy to do that - What God ?? What now?

Nikki - Love and Miss you my son !

Love you Kylee!

Monday, August 28, 2006 12:57 AM CDT

John & I went away for our 1 yr. Anniversary. It doesn't seem like a whole year has went by since our wedding. I'll never forget that feeling I had as my dad and son walked me down that isle. Zachary was so proud of his job that day - - - . . .

Today is so real how everything is so different and how I long to have that old "normal" back. I love all you guys and appreciate all your support through all of this. I don't tell you that enough. You mean so much and alot of you I don't even know personally - just through your prayers and support. Thanks! It's a rainy day here - I don't know if I ever mentioned it here on this page - Zach loved his rainy days!!

I love and miss you my dear son!!

I love you John - You are a wonderful husband!

Nikki - Zach & Kylee's mom

Wednesday, August 23, 2006 0:42 AM CDT

I feel like I was stripped of my sense of self. I feel as if someone came in the night and stole my life and put me in the middle of someone else's life. How do I come to grip with my new sense of self? I keep asking myself that. I LONG to have my old self - I wasn't in need of change - I loved my life - I had a wonderful husband and 2 amazing children - and now . . . . . . . I know I am very thankful for Kylee - she is a Gift from God too - It's just not the same without my Zachary.

This week is very hard. This week Kylee starts 5th grade - and Zachary was so excited about being a freshman this year. I just wish we were experiencing this all together - I think of Kris being a freshman this year and I just wish I had the luxury of Kris and Zach in Zach's room having fun playing video games, calling girls, setting up house parties and listening to them sing along to songs. I MISS that soooooo much. I miss the two of them together and the smiles on Zach's face - knowing he was enjoying life. Knowing he had an awesome best friend. My Zach - he could see your heart - he knew - he could see good in everyone - he brought out the best in people. I miss you my son tonight. I am having such a hard time figuring out what God wants me to do now - who does God want me to be - and where is my life going?? I'm blowing you kisses your way my son and sending so much love - - - There are no words to describe my heart and the pain that it has without you here. I miss you every single second and I just don't want to let you down.

I think of how Zachary always made the small things always out way the bad. Even at the end - I drove to Game Stop to surprise Zachary with the new game Disney came out with (Kindom Hearts) for his PS2 on May 4th - he was determined to beat that game. May 22nd he said mom today was a good day - I hung out with Kris & Chad - talked with Chad and made sure we didn't have unforgiveness in our hearts and I finished my game. He said I only struggled a couple times with getting enough oxygen - He was telling me he had a good day. Those little things added up and out wayed the bad. I love my son and appreciate the things he taught me. With tears down my face he said with a smile - it's ok mom - I'm not going to heaven yet - God still wants me to help one more person. Zachary wasn't afraid of dying and he wasn't afraid of not having enough time to find his way in life and accomplish what God wanted him to do - His relationship with God was much stronger - He TRUSTED GOD WITH HIS WHOLE HEART - A lesson I need to learn. I love you my son Zachary!

LOVE YOU LOVE YOU LOVE YOU!!!

Zach & Kylee's Mom - Nikki

Wednesday, August 16, 2006 9:46 AM CDT

Yesterday I went to St. Jude clinic - - -

Not even thinking I drove to Mountain Mudd on my way to St. Jude - looked over in the passenger's side and realized that I may have been going to St. Jude - but, my best friend, son wasn't in the passenger's side with me. Mountain Mudd - Zach loved his lattes - He always was adventurous and wanted to try something new - then I was crying and just couldn't stop. How I wanted that feeling of a proud mom driving her son to clinic after being told several times that Zach didn't have too much time left on this earth. I had the biggest smile on my face with a feeling of so much happiness and pride that MY SON was sitting in the passengers side and was feeling good enough to put a smile on everyone's face. You see, Zach always felt good enough to put a smile on everyone's face that came in contact with him. Zach never complained and he never wanted anyone's pitty. He wanted people to love life - he wanted them to learn that life is a gift - and to LIVE BIG. He wanted everyone to realize that you don't take one day for granted -

LIVE LIFE - LIFE IS A GIFT

Zachary was my gift - and how I wish that gift was still in my passenger's side - missing you my son - LIFE is so different without you here and I'm learning to live without you here. I know I will see you soon and that is what gets me up every morning. I promised you that I would be ok - and I never broke my promises and I don't intend on breaking any now. LOVE YOU BUNCHES!!

Zach & Kylee's Mom - Nikki

Saturday, August 12, 2006 1:10 PM CDT

Missing you soooooooooooooooo much my Zachary!! Longing to touch you right now - the feeling is so real and yet - there are no words to describe the feeling.

I need you so much Zachary -

John & I just got back from Oklahoma - I went along on one of his business trips. We had a really nice time - and really enjoyed eating at a Mexican Restaraunt - Ted's. It was soooo good. The trip on the way back was a real treat - security changed drastically in 24 hrs!!! We ended up driving home with a rental car after a flight cancelation and not being able to get a flight until the next day because of weather and security changes. Personally I don't think it had anything to do with weather - that is the airlines way of getting out of having to reimburse the customer. It was because of security reasons - but, ok.

Today is just a really hard day and boy, no Zach for almost 3 months. I can't believe it . . . . School getting ready to start and he is suppose to be a freshman - he was so looking forward for that. His friend Kris is a freshman this year - they should be experiencing this together - and I just really hate that Zach isn't here - with Kris experiencing this - having house parties and girlfriends - I just really really hate all of this.

Miss you and love you plus 1 my son!!!

Zach & Kylee's Mom - Nikki

Sunday, August 6, 2006 8:17 PM CDT

Yesterday was the local St. Jude Telethon. John and I drove for the Pekin to Peoria St. Jude Run and Kylee answered the phones from 7:30 - 8:30. THANK YOU TIM, AMBER AND CHAD FOR RUNNING FOR THE KIDS!! I appreciate it so much and so does all the other families that are a part of the St. Jude Family!! We love you guys!!

Here's a pic of my brother Tim and his wife Amber that ran in the St. Jude run and also my cousin Chad.

Here's a picture of all the family that helps support the run (we are all wearing our T-shirts for Zachary) They say Teen Wonder then a Z (it looks like the Superman sign) and then on the back of them is a picture of Zachary that says Love Ya! See ya soon! It's his 8th grade picture.

It was a very hard day. There were times for no reason I just would start crying. Zach was part of the run last year. I'll look for a picture of him coming in with all the runners. That's what was so hard - I remembered what I did with Zach at each resting point - he is soo missed!! I love you my Zachary!!

Last night was very hard at the telethon. There were times I would say hi to people and they would look at me like they didn't know me - I do look different without my Zach at my side. It's wierd how you are identified by the people you are always with and when that person is gone - I do look different without Zachary - part of me is gone - part of me has died with Zachary and how I long to have that part of me back! Missing you My Teen Wonder!!

Nikki - Zach & Kylee's mom

New pictures in photo album!

Monday, July 31, 2006 11:13 PM CDT

Missing you my Birthday Boy!! Oh Zachary . . . .

14 years ago - I went to Washington's Good Neighbor Days - walking around with you in my belly and complaining of back pains. I was eating strawberry shortcake - which is you favorites!! I couldn't sleep that night - kept waking up with labor pains. I woke up shaved my legs - did my hair & makeup and was ready to go to the hospital to have you - because of the bad labor pains. You were ready to enter this world and I couldn't wait to see you - kiss you and tell you I love you. I told you I loved every chance -

You didn't even cry when you were born - you just looked up at the lights and looked around. I already had your name picked out when you were still in my belly - Zachary Montell Allen - I had lots of things made with your name on it. One thing I still remember is the hat grandpa Tom had made at the fair - a sailor hat with Zachary stiched on it - What an awesome 1yr photo that was.

So, my Dear Zachary - I want to say thank you so much for talking to me in my dreams last night. I was so happy and never wanted to wake up - I was waiting for you to come back in my dreams and talk some more - I reminded you that you promised you would talk in my dreams all the time - I was wondering where you were. I love you soooooooo much and miss you so much!! It seemed everything was all better when I was holding you in my dreams as you had tears coming down and saying mommy over and over again - then I realized I was dreaming - suddenly everything wasn't ok any more - you were no where to be found to hug and to wipe the tears off of you cheeks and say it's ok.

This is your first birthday with Jesus - have fun baby!! I can't wait to be joined with you again - till we meet again . . . Happy Birthday my Dear Zachary - Love you always always!!

Mommy

Thursday, July 27, 2006 10:58 AM CDT

John, Kylee and I went looking for things to make Zach's grave have a reflection of Zachary and his character. With his birthday coming up - and still the headstone not coming in - it will be here in November - but, then they have to do all the engraving. I can't wait to see the finished product. It truly is a reflection of Zachary - It's a final thing that I can do as his mother by taking care of him - how I wish every day that this is not the reality.

Missing you my Teen Wonder. Mommy is getting things together for you -

I'll take pictures of it at his birthday - with everyone there to support him!

Remember - August 1st - at 6:00 - if you have any questions give me a call. His classmates are welcome to join us!

Zach & Kylee's Mom

Monday, July 24, 2006 11:56 AM CDT

Today I'm loggin on and have tears streaming down - how I'm missing my Zachary. Terribly - I love him so much and would do anything just to lay by his side and hold his hand how he dearly loved that. He loved just sitting by his side and holding his hand - I would do anything to look into those beautiful eyes right now - - - - -

Missing you my Teen Wonder -

You taught me so much - you helped me in every way a son could help his mom. You had a purpose - I love you so much my dear Zachary! Mommy is blowing kisses your way!

Zachary's 14th Birthday is August 1st. We are meeting at his grave at 6:00 p.m. to let off Superhero Balloons. Our friends & family are welcome to join us - this will be a very special time and very emotional - so only those that are supporting us during this most difficult time - Not those that are causing more pain for this family - If Zachary was here and seen what was going on he would be here making sure that his mom & sister and John was ok. The awesome thing - Zachary is watching over us and making sure God is in control of the whole situation. So my God is in control - My God is for me - who can be against me? That is a very encouraging message.

Thanks for all your support - It's during times like this that I rely on your encouraging messages -

Nikki - Mom to Teen Wonder & Princess Kylee

Wednesday, July 19, 2006 9:52 AM CDT

I have a few Zachary funnies today . . . .

Yesterday I found a box of Raspberry Poptarts stashed away :-) My Zachary had a few favorites that he liked having around when he did get a hunger pain - it put a huge smile on my face. I know which plate is Zach's after eating poptarts - the edges and corners are the only thing left on the plate :-) Also, when he took a bite he would put the thing back down and rub his fingers together to get the crumbs off - - - he hated crumbs and his hands being messy - he was a neat eater like that from day one. Also, did you hear of a boy that didn't like playing in dirt and getting dirty - well, Zach was one of them - he hated getting dirty! He liked clean shoes and would have me wash them off with a disinfectant wipe :-) OK, now you can tell - he was just a little OCDish :-)

OK - Another Zach funny - Whenever we went to Disney World or Disneyland - Zach got to eat all the Mickey waffles he could - only his eyes were much bigger - He would go to a restaraunt and ask them for their menu and if Mickey waffles wasn't on there - well, we would have to search until we found them on the menu - So, Zach would order Mickey waffle and bacon - extra crispy but not burned :-) You would think one would eat the stuff when they searched so hard for it . . . I guess he found great comfort in seeing them on his plate because he didn't eat it - not that he didn't want to - it's just that he had a hard time keeping things down :-) I laugh because we knew all this ahead of time but we searched and would walk miles just for him to find the comfort in having the Mickey waffle on his plate with the extra crispy bacon but not burned . . . What we did for him - I don't think I could of told him no - - - Zachary would get very upset if anyone would accuse him of being spoiled - so, just FYI - he wasn't spoiled :-)?!

I thought this would put a smile on your faces!

It's Zach putting that smile on your face!

Nikki - Mom to Teen Wonder & Princess Kylee

Monday, July 17, 2006 0:32 AM CDT

We find ourselves missing Zachary more and more - it seems to get harder - NOT at all easier. How I just miss him.

Last night I had a dream of needing his IV meds - I glanced at the alarm clock and noticed I was almost an hour late on giving him his meds - I ran in to check in on him and he was ok - but his lips were really dry. I almost jumped out of bed thinking it was real - and that I needed to give him his meds before he would start hurting again. I layed there and just cried - wishing I still had that luxury of getting up and talking with him as he would always put a smile on my face.

Longing for just to even just hold his hand or put my hand on his face - he had the softest skin......

I had to physically touch him - I had such a longing last night to just touch him - I searched through his closet and found one of his radiation molding of his face and upper chest - it wasn't Zach - but atleast I could close my eyes and remember holding his hand as he laid on the table while making the molding for his last radiation treatment. At least it was a molding of his body - I could see that it was Zach's - how MOMMY IS MISSING YOU!!

I love you , love you, love you. I can't believe you are going to be 14 years old in a couple weeks. Mommy is wanting to make plans for a huge birthday party. I'll have to think of something to do with the family to give you a party. It just won't be the same without you!!

Nikki - Mom to Teen Wonder & Princess Kylee

Tuesday, July 11, 2006 11:40 AM CDT

Zachary � My Gift from God

I close my eyes and remember the day that I held my precious gift for the first time.

Zachary Montell Allen

How beautiful he was . . . perfect in every way.

Never was this gift taken for granted. I was so proud of this gift. I had to show everyone. This gift made my heart smile. I was so happy. This gift made my world all better. I began to grow again. My soul became alive and wanted to teach everything that God wanted me to teach to My Son � My Gift. I didn�t want to let him down. I wanted to be the best mom ever and didn�t want Zachary to be disappointed in his mom. I was chosen � chosen to be Zachary�s mom.

God chose me out of everyone in this whole world for me to be his mom. For me to love him and to teach him love. My heart just kept growing � Continually being taught by my son � what it means to live and to love.

Zachary . . . For the next time I see you � your heart will be the same � that never dies � The things we taught each other � that will be forever part of us. Thank you my dear Zachary � I can not wait to hold you again in my arms and tell you again I love you � of course we could always tell each other that just with our eyes. I can�t wait to see you whole and in perfect health! Until that time I will keep replaying all the awesome memories we made together � that is something that no one can take away!!

My Dear Zachary

My Gift from God

I love you always always!!

Your Chosen Mommy

Monday, July 10, 2006 7:50 AM CDT

First my dear Zachary - have you noticed your counter at the bottom of your page??? You are still touching peoples lives and you are not forgotten!! I promised we wouldn't forget about you - you are still very much alive . . . only in heaven - we can't wait to see you again - until then Mommy is sharing you with everyone - yes, everyone!! Never to be forgotten!

I can't believe it - 45 days without a single kiss from my Teen Wonder - or I love you with my Whole Heart - MISSING YOU!!! One reason, things that I can't believe is happening you would give me a great big hug and say mom, everything is going to be alright - that and you would be burning whatever people are fighting over (my family knows what I'm talking about along with some close friends) :-) You would know, that now that you can't be the one enjoying it - I didn't want it anyway and I told you that a thousand times. We agreed what you wanted to do with everything before you went to Heaven - which mommy never lets you down on promises. How I miss you and your personality! I did find great comfort in knowing that you were here and taking care of me and your sister. No one will ever know - especially your biological father - who would not have a clue on anything you've gone through or what kind of personality you had that I miss.

Anyways - LOVING YOU MY TEEN WONDER!! Guess what kind of memories John, Kylee and I made this weekend?? We went to one of your favorite restaraunts! That made me start missing you so much - along with your bud Aaron - Marilyn - yep, you know where - Rainforest Cafe!! As soon as it started thundering and the monkeys and gorillas started doing their thing - I was saying out loud - boy, Aaron & Zachary are loving this!! I wish I could see their faces now. That time that we spent together in Disney - boy Marilyn we had some precious time together with the boys - time that was priceless!!

OK, so it's about time for Kylee to start school and I'm starting school. Finishing a Child Development Major - and no longer working :-) With everything that is going on - working is not what I could handle right now.

Please keep praying for Zach's friend Chassity (her website is below) and also, pray for our family. We need to learn to just give EVERYTHING over to God and let him take control - I'm struggling with that right now.

Thank you all so much!!

Nikki - Mom to Teen Wonder and Princess Kylee

Sunday, July 2, 2006 11:57 AM CDT

Zach knew exactly how I was feeling just by looking at me - he knew exactly what to say to make everything ok. There is a big huge void for me - because there isn't anyone on this earth that knew me that well - - - how I miss you my Zachary!!

I have a few funnies . . .

One Kris's mom shared with me last night - 1st grade field trip - Kris's mom went along with the class - Kris & Zachary were sitting in the same seat on the bus - They were seeing who could blow the biggest spit bubble . . . you know the little things boys do to entertain themselves :-) The thing I treasure about that moment - that was one of his "normal" kid moments . . .

ARE ya up for another . . .???? One of my favorite games when he was 2 - 3 yrs. I would pretend that I couldn't see him - - - I would yell Zachary where are you ? ? ? !!! He would get in front of me - right here mom - then he would take my face and aim it at his and say I'm right here mom - doing everything - then I would say there you are - He would get the biggest kick out of that - - - we played hide and seek well - we never stopped - I rented until 1999 - the day I picked up the keys for the house - Zach Kylee and I went running through the house - empty - lots of room - lots of room to play hide and seek - So, We decided to play - an hour went by and I still couldn't find Zachary - I started going up and down the streets yelling - Z A C H A R Y - where are you ??? I started to call the cops - came back into the house and started frantically looking then I opened this huge cabinet door under the oven - There was my Zachary all curled up asleep - he had fallen asleep. He was on high doses of chemo because it was just a few weeks before his bone marrow transplant. VERY tired - - - Moments I'll never forget.

I love you Zachary!!!

Nikki Mom to Teen Wonder and Princess Kylee

Friday, June 30, 2006 7:30 AM CDT

Ya know, I'm at a point where I would pay all the money in the world even to hear my son and my daughter to argue again. Music to my ears - MOM . . . . MOM . . . Kylee's in my room and won't get out :-)! Truly - Music to my ears!

Zach, I could probably count on one hand through his entire life that he caused trouble and he needed punished. I can't remember the last time - He never gave me troubles - never - he never smarted off - he was even a teenager !!! How about that - a teenager that didn't smart off!? How rare is that?? My Zachary - I couldn't have asked God for a better son -

What an awesome awesome gift from God - My son, Zachary Montell Allen - What a joy in my life -

MISSING YOU ZACHARY!!!!!!!!!!

LOVE YOU!

Nikki mom to Teen Wonder - and Princess Kylee

Wednesday, June 28, 2006 10:39 AM CDT

I have a funny - I checked and I haven't shared this yet . . .

May 25, 2006

8:00 a.m. - time for Shift change with the Nurses - Ginger comes in - a nurse that Zach has had several times but he was on a continuous Ativan Drip and one's memory is a little messed up on the high dose he was on (40/mg an hr at the time) - Ginger came in and Zach said . . . . . .

It will be YOUR pleasure to have me as a patient - I'm like no other patient you've ever had - sometimes you'll just need to come in and hold my hand . . . He's so right - he was like no other patient you could ever have - So loving - so understanding - so . . . just Zach - No one could ever fill his shoes - he had such a BIG JOB -

He knew his mission - he accomplished it with grace and style like no other.

How I love my Zachary --

MISSING YOU!!

Nikki - Mom to Teen Wonder & Princess Kylee

Monday, June 26, 2006 4:01 PM CDT

Can you believe it's been 1 WHOLE MONTH since my Teen Wonder danced through Heaven's Gates - How I just wish to hear him say "Mom, I love you with my WHOLE heart" - I long for his kisses and hugs. The last week with Zachary - it was a struggle for him to catch his breath to take his mask off long enough to give me a kiss - Those kisses meant so much. It would take him a few minutes to get ready - then he would motion for me to get real close - he would quickly take his mask off to give me a HUGE KISS - Those memories - forever in my head to replay over and over.

MISSING YOU MY TEEN WONDER - EVERY SECOND - EVERY MINUTE - EVERY DAY for the rest of my life here on this earth.

LOVE YOU LOVE YOU LOVE YOU!!!

My heart is too broken right now to think of a funny - I will try and update with one - there are several hundered :-)

Nikki - Mom to Teen Wonder & Princess Kylee

PLEASE PRAY FOR CHASSITY AND HER FAMILY - HER WEBSITE IS BELOW - THANKS!
SIGN HER GUESTBOOK AND LET HER KNOW THAT YOU CARE ABOUT HER AND HER FAMILY AND THAT YOU ARE PRAYING.

Thursday, June 22, 2006 5:38 PM CDT

Ok - here's a Zach Funny - Some of you have already heard it - but, it's so funny I love telling it

OK it's May 24, 2006
Zachary is in the hospital - just 2 days before he goes to heaven

Gabi calls to ask Zachary how he was doing - Zachary's response . . .

Tell Gabi I'm FINE and I'M STILL single :-)!!!!

Too Funny - I'll ALWAYS remember that.

Still trying to pick up chicks to the end - of course it just wasn't chicks - it was one particular chick :-)

How I love talking about my Zachary!!

LOVING ALL THOSE ENTRIES IN THE GUESTBOOK!

Long day at work - Brain OVERLOAD :-) Of course, it doesn't take much! HAHA

Nikki - Mom to Teen Wonder & Princess Kylee

Wednesday, June 21, 2006 9:55 AM CDT

Here's a Zach Funny :-)

Lesson Learned: Always mark the bottled water that had the stool softner in it :-)

Well, Zach was on bunches of pain meds that caused him to be constipated - - - So . . . The Dr. put him on a stool softner - one that was powder (clear and tasteless) - Zach would only drink bottled Avian water at the end - I would mix the powder in every bottle water for him. Well, I also drank bottled water and both of us after drinking some we would screw the lid on and put it back in the refridgerator (the water had to be very cold :-)) we both at a certain place.

Well, Zachary put his bottle where I always have mine - well needless to say - I had help in an area that I already didn't need help in - having stress and all I really didn't need help in that area if you know what I mean :-)

So, again the lesson learned ALWAYS mark the bottle that has stool softner in it :-) My Zachary always up to something that would put a smile on my face.

I know I'm going to look back at this entry and wish I didn't write this on top of all the misspelled words - your brain really doesn't work so well going through everything . . . brain overload?!

LOVE ALL THOSE ENTRIES!!! Thanks! Love you guys.

Nikki - Mom to Teen Wonder and Princess Kylee

Praise Report:
Well, I start work tomorrow! At OSF St. Francis - In Behavior Health . . .

So, hopefully this will be a good change - Pray that I will be able to handle everything . . . Keep my mind busy :-) Pray that I will not get a brain freeze too often :-) I am usually an awesome speller . . . well, lately my brain just doesn't want me to think right!

Saturday, June 17, 2006 9:28 PM CDT

I know I promised some funny Zach stories - here's one that puts a smile on my face every time I think about it . . .

It was the end of his Kindergarten year - Mrs. Troutman's class May '98 - Anyway - I was waiting under the same tree outside for Zachary and I waited and waited - still no Zach . . . I began to walk in the school yelling for Zachary - I started asking his teachers - then all the teachers - we were all outside looking for him - - - an hour went by and I was panicking (I know what you're thinking - this story isn't funny) well, my cell phone started ringing - it was my mother - who lived oh about 10 blocks away from the school - Zach had walked to her house?????? How - because we had never walked from the school - my Mom asked Zachary how did he get there because she didn't see me - Zach responded with his onry smily face - well, I followed the yellow brick road -

I think of moments like that and I just have to smile - Zachary - always so independent - always being a man of the house and taking care of me and his little sister Kylee - then he found John for me - got John and I together - he knew I needed someone to take care of me in his absence. He seen something in John that he knew he was a keeper. I love you my dear Zachary!! MISSING YOU ALWAYS!!

Nikki - Mom to Teen Wonder

I have a favor to ask everyone - I would really enjoy knowing who all visits Zachary's site - so, if you could just leave your name if you don't know what to write . . . Please? And for a bonus - if you have a story about how Zachary has touched your life some how - I would really really like to read those - that is what keeps me going - along with knowing he's all better now. I'm making a scrapbook of those kind of things. Love you guys!

UPDATE: Monday June 19th 5:00 p.m.

John flew out yesterday for work - he will be gone for a week . . . so . . . Kylee & I are on our own!?? Wow, talk about having to deal with so many emotions all at once!! Well, I just logged on and to my surprise there were so many guestbook entries - thank you thank you thank you - it was just what I needed. I am so longing to just hug my Zachary and to just be reminded his purpose here on this earth and how he is in heaven completely healed - I just want to say thanks for putting a smile on my face - thanks Zach for touching so many lives - you are one amazing son! LOVE YOU BUNCHES!

Friday, June 16, 2006 1:55 PM CDT

I'm having a much better day today. Thanks Rebecca for your encouraging e-mail. Things I have to keep being reminded - - -

1st - Zachary will never hurt again - no pain - he's all better and he is in his eternal home with Jesus - it can't get any better than that -

2nd - if Zach had a choice - he'd stay where he is at - a place that is perfect - no worries

3rd - in Zach's blink of an eye I will be there - he is not missing me - I am only missing him along with everyone that his life touched - he doesn't even realize that he is missing anyone - we will be there with him -

4th - we need to exercise the lessons Zach taught us - to LIVE LIFE - each day is a gift - life is too short!

I love you Zachary and missing you every single second!!

Thanks for all the encouraging words - it really helps me out during difficult times.

Nikki - Mom to Teen Wonder & Princess Kylee

Which Kylee is doing ok - she is still attending day camp that her and Zach went to every summer together - - -

Thursday, June 15, 2006 2:15 PM CDT

I promised Zachary I'd be OK - I promised promised promised -

Which means I never can break promises - especially to my Zachary -

Today has been the most difficult day yet - Today was my first day all by myself - without Zachary - without John - without Kylee - without anyone - and today out of all the days - Zachary's FOID card comes in - he has a HUGE smile on his face. He couldn't wait for it to be here - I had his hospital bed in the living room in front of the bay window - as soon as the mail man would get here - He would tell me hey mom maybe my FOID card is here today - - - Maybe . . . just why couldn't it have come a month ago so Zachary would be able to put a smile on his face knowing he had his card.

with lots and lots of tears - I love you my Teen Wonder - my Zachary - I MISS YOU SOOOOOOOOOOOOOOO MUCH!!!!!

mommy to Teen Wonder

Monday, June 12, 2006 11:55 AM CDT

The reason why Mommy Loves you Zachary - is just because you are you!!!!!! I LOVE YOU WITH MY WHOLE HEART!

That is what Zach would always tell me - he loves me with his whole heart - he would either say that or I love you Plus One - - - Do have any idea how much I would love to hear him say that to me just one more time - then I realize what I would be asking - I would be asking for him to be a prisoner in his own body and not be free - He's free now - I can only Imagine what my Zachary - or should I say Teen Wonder is doing right this minute . . . . . . . Totally free of pain - free of cancer - Perfect in every way

I thought I would share a key chain that I bought the other day - The top says August 1st - that's Zachary's birthday - -
Those born on August 1 are highly original and pragmatic with a great ability to convince others to see their point of view. They have dominant personalities and an incredible zeal toward their mission in life. Balanced against this is a well developed sense of humor. That is my Teen Wonder - That describes my son - my Zachary - I love you and miss you with my whole heart!!

Vacation plans - well, we are shooting for Disney World for Christmas and Disney Cruise in January - waiting for John to have time from work. So, Kylee and I are going to enjoy each other - get some one on one time during the summer. She's going to day camp for a few weeks and playing softball. I thought it would be good to try and cope with everything and work on her school work - she kind of lost a year - she couldn't really concentrate on school this year. I love Kylee and she needs me as I need her now too.

Love all you guys and appreciate all your prayers and support!

Nikki - Mom to Teen Wonder & Princess Kylee

Friday, June 9, 2006 10:29 AM CDT

I thought I would share some of Zachary's final moments here on this earth - he had wisdom way beyond 13 years old . . .

Zachary was home Friday May 19 - Tuesday May 23 - In just the few days Zachary accomplished everything he knew he wanted to accomplish - First he had his graduation - something he looked forward to for such a long time. He was told that if he wanted to graduate he had to pass his constitution test - he carried around this booklet about the constitution with him everywhere - everywhere . . . filling out the blanks trying so so hard to study - This was while on 250 mg. an hour of dilauded - 20 mg of Ativan every 2 - 4 hrs - 30 mg. of diazepam every 4 - 6 hrs and other IV meds - that alone how did he do that. He had such determination - They let Zach participate in the graduation knowing that he deserved it and that if he didn't have this set back - Zachary was so smart - so smart - He graduated in 2 ways - First his dream of becoming a graduate came true - and his dream of becoming all better came true - HOW PROUD HE MAKES ME !!

Then he said he wanted to talk to Chad - a friend that he's had since either preschool or 1st grade - but the last couple of years there was friction between the two - and he wanted to tell Chad that he loved him and that he forgave him and he tried to teach him that to just be yourself - That night of May 21st Kris, Chad and Zach played Kingdom Hearts 2 together - Zach was also determined to beat the game before he left this earth. That night after Chad & Kris left Zachary finished the game! I got Zachary ready for bed - changed his dressing -gave him his meds - and he said - MOM - today was a good day - I talked to Chad and I finished my game - I had tears coming down my face - he said don't worry mom - I'm not going to heaven just yet - I still need to help one more person - but, he didn't know who . . .

Zachary went back into the hospital May 23rd (they started him on an Ativan continuous drip) and on May 25th his whole class came to see him and they sang to him - Zach had a smile on his face - after everyone left he said mom - I just helped the last person God wanted me to help - I don't know who - - - I believe he helped everyone that experienced those precious precious moments. That night Zachary had the worst night - he couldn't get comfortable and the nurses had to keep helping him along with his organs shutting down - he kept apologizing for his need of help - I told him to stop apologizing - Along with telling everyone he had contact with that he loved them with his whole heart - By this time his Ativan was at 60 mg. an hour in the morning of May 26th - he was finally sleeping peaceful - I leaned over and told him that I loved him with my whole heart - to my surprise he said I love you too - - - I then sang I can only Imaginie in his ear - Then everyone that was special to Zachary started coming into the room - 1 hr. before Zachary took his last breath he yelled I FOUND IT - - - I know what he found - He found the LIGHT - because when his biological dad - Duane came into the room I leaned over and told Zachary that everyone was here Kris, Kim, Jackie his whole family and his dad and that we loved him with our whole hearts - 5 minutes later Zach took his last breathe - with everyone by his side -

My son - knew his mission in life - DETERMINED to finish it - always thinking of someone else - never thinking of himself -

My son - The Teen Wonder - Taught me so much - so much

I love him and MISS him more than I could even explain - I long for his hugs his kisses his voice telling me that he loves me - with HIS WHOLE HEART - he was so sincere -

MOMMY LOVES YOU ZACAHRY AND THINKS OF YOU EVERY SINGLE SECOND AND CAN'T WAIT TO SEE YOU ALL BETTER - - - I JUST WISH IT WAS HERE THAT YOU GOT YOUR MIRACLE -

LOVE YOU!!!

Monday, June 5, 2006 8:53 AM CDT

I want to thank everyone that is praying for us and all the encouraging words in the guestbook.

A HUGE THANK YOU FOR EVERYONE THAT WAS INVOLVED IN CHAD CREECH'S FUN WALK - It meant so much to this family that so many walked for Zachary and to raise money to find a cure for Neuroblastoma. I promised Zachary that I will help in any way to help find a cure - I never break promises to Zachary - How I love him so much -

His sister Kylee even walked for her bubby that she is missing so much. I'm so proud of her!

Thank you to everyone that came to Zach's visitation and funeral - the turn out was so encouraging - to see so many people that Zach has touched in his short life here on this earth. The services were beautiful - So many friends . . . it truly shows what an amazing TEEN WONDER he really is! Can't wait to see you Zachary -

The love from the people that he touched in his life is so encouraging to us - something that we need in this time of our lives. The reality of the situation is settling in - I'm at a loss for words . . .

John and I went away for the weekend to be together and to just get away - - - While Kylee was with our family - grandma & grandpa -

We are trying to make arrangments for a vacation for the 3 of us - Cruise & Disney World - Memories of Zachary - that was our thing together - Zach & I have been there 8 times together - There was a couple times that Kylee didn't come - She's been there 6 times and all with memories of her and her bubby - I can't even imagine what is going on in that head of hers - I know she is hurting - - -

It's Kylee's time for attention - she needs it and deserves it more than ever - - - I love her so much - she is alot like me in how she reacts to things.

We love and appreciate you guys!! Also I would like to thank all the contributions that have been made to St. Jude & GSLS in Zach's Memory - THANKS!!

Nikki - Mom to Teen Wonder and Princess Kylee :-)

Friday, June 2, 2006 7:31 AM CDT

One whole week without Zachary telling me he loves me with his whole heart. One whole week since I hugged my son - what a huge whole in my life. I simply live one day at a time trying to learn to live without him here on this earth. I would do anything to have and to hold him here - only if he was better. I know he is not suffering anymore and for that I'm happy. I just miss him sooooooooo much. I try and picture him walking and talking with his friend Jesus. He's all better - Remission FOREVER - he never has to be told he relapsed ever ever again.

Zachary was part of my every minute here since August 1, 1992 - I knew exactly where he was - Zachary always asking me to sleep with him - something he never grew out of because of his circumstances - there was a couple years that he out grew that - but once he relapsed this last time I think he knew he had to cram all his memories and all his time with his mom in a short time - he never wanted to leave my side. Never - he was by my side all the time and I enjoyed every single second -

We drove by Cranwell's last night - a drive in - last summer that was our place. We each would order a frozen raspberry lemonade and 1 order of nachos to share. Emotions ran very high - realizing that there are things that enjoyed so much with my Zachary - that it will never be the same with someone else. He made me laugh all the time - I was always laughing - ALWAYS - he made sure that his mom had a smile on her face - He told me once that it's because he felt like everything was alright when I smiled. I miss that smile - - -

loss for words

Nikki - mom to Teen Wonder

Monday, May 29, 2006 9:10 AM CDT

Kylee said she feels like she is living a fake life right now. Weird - but that is exactly how I feel. I guess talking with someone is helping her. She is beginning to be able to put words to how she feels. I'm so proud of her. Zachary is such a huge part of all our lives and I feel like I'm walking around forgetting something constantly.

I know Tuesday & Wednesday will be the longest days ever.

We found an Illini Hoody for Zachary to wear. Number 11 - Dee Brown - his favorite player.

OK - here's a sign that Zachary is ok -

Friday night was an extremely emotional night and I cried to Zachary that I just needed to know that he was just fine. Well, Kylee had a softball game Saturday morning - leaving the game we came to a stop sign. John said hey hun do me a favor and pick up what's on the ground right by your door - I opened the van door - looked down - there was this S (Superman Sign) in silver the size of my hand on the ground - I picked it up with of course this HUGE smile on my face - Knowing Zachary was telling me - MOM your Superhero is JUST FINE - Jesus is doing an excellent job of taking care of me. Of course he was showing off - Zach's way -

I will begin to share funny moments that Zachary gave us - guaranteed smile on your face :-)

I want everyone to know just how appreciated you are by this family and how much your prayers and encouraging words mean.

I LOVE HEARING STORIES OF HOW ZACHARY HELPED YOU IN ANYWAY - It helps me to just know that he had a purpose - he did that and now is completely healed in heaven. He will continue to touch lives - because I will continue to tell his story for the rest of my life here on this earth.

How I love my Zachary and Kylee!

Nikki - Mom to Teen Wonder

Friday, May 26, 2006 5:50 PM CDT

Zachary is home with his Heavenly Father - ALL BETTER - CANCER FREE - DANCING WITH THE ANGELS - WALKING THE STREETS OF GOLD - PLAYING BASKETBALL - EATING A FEAST -

It's our loss and his Prize - He won the ultimate prize - One day soon - I will see my son perfect - running - no longer suffering

He left this earth very peaceful - he was sleeping and just stopped breathing today around 12:30 in the afternoon.

Thank you for everyone's prayers. After his classmates left yesterday - He told me . . . Mom I just helped the last person God wanted me to help. He said he didn't know who it was - but, it was during the visit with his friends from school. My Zachary - always thinking of someone else.

I love you Zachary with all my heart forever!! Miss you more than you could ever know - but so happy you are completely healed!!

Nikki - Mom to Teen Wonder

Because Zachary planned to attend UofI after High School - I thought it would be appropriate for everyone to where their school colors - Orange & Navy for the Visitation on Tuesday - Zach has graduated - from this earth to Heaven - Everything that Neuroblastoma stripped from him - he is getting back plus more.

PEKIN ~ Zachary Montell Allen, 13, of 1309 Lincoln Street in Pekin, passed away at 12:50 p.m. Friday, May 26, 2006 at OSF Saint Francis Medical Center in Peoria. Zachary had come to be known as �Teen Wonder� as he courageously battled neuroblastoma for the past 9 years as a St. Jude patient

He was born August 1, 1992 in Pekin to Nikki Lynn Allen and Montell Duane Beasley.

Surviving are his parents, Nikki L. and John A. Leman of Pekin; his father, Montell Duane Beasley of Peoria; one sister, Kylee Lynn Allen of Pekin; three half sisters, Caressa Todd, Marissa Todd and Justice Beasley, all of Peoria; his grandparents, Tom and Diane Allen of Manito and Lee and Dori Leman of Osage Beach, Missouri and his great-grandparents, Bonnie and Jack Allen of Pekin, Diane D. Schoenfeldt of Marquette Heights and Joanne and Joe Seward of Pekin.

He was preceded in death by his grandmother, Florence Adele Leman and his great-grandfather, Veryl Dean �Rusty� Schoenfeldt.

Zachary was an 8th grade student at Good Shepherd Lutheran School in Pekin, where he was vice-president of the student council and played basketball his 7th grade year. He also played the chimes during his 7th and 8th grade years at Good Shepherd.

He was an llini sports fan. He also followed Chicago Cubs Baseball and the Minnesota Wolverines Basketball. He enjoyed collecting Superhero comics, especially Batman and Superman.

He was a member of Trinity Mennonite Church in Morton.

The family wishes to thank the nurses and physicians for the special care given. They also want them to know how important and loved they were to Zachary.

A funeral service celebrating Zachary�s life will be held at 1 p.m. Wednesday at Trinity Mennonite Church in Morton. The Rev. Michael D. Hutchings will officiate. Visitation will be from 4 to 7 p.m. Tuesday at Preston-Hanley Funeral Home, Pekin Chapel. Burial will be in Lakeside Cemetery in Pekin.

In lieu of flowers, the family requests memorial contributions to the St. Jude Midwest Affiliate, 4722 North Sheridan Road, Peoria, IL 61614.

To express condolences online, visit www.preston-hanley.com

Friday, May 26, 2006 7:18 AM CDT

Sorry for the delay in updates. I've been by Zachary's side and just don't want to leave.

We are in G210 at the Children's Hospital.

Zachary had a surprise yesterday . . . his class to a field trip to see him!! He loved every minute. They even sang some songs and one with Cookie. It was very special. Thanks GSLS!! We love you guys. Kris is the most amazing friend to Zachary. We love you too Kris.

It is a constant struggle to get Zachary comfortable. He's on a continuous drip of Ativan. That is helping with his feeling of not enough oxygen. Along with several other drugs - - -

This is very very hard and never did I ever imagine my Zachary having to go through what he is right now. The cancer is just an ugly ugly disease and my heart is breaking. I just can't go into details of what or should I say how ugly this thing is and is growing so fast and yet Zachary is making sure he helps everyone he is suppose to before he goes home to be with Jesus. He is still concerned for others and is always telling his nurses sorry needing their help all the time. I keep chiming in and telling him there is nothing for you to be sorry about. You didn't choose this - It chose you.

Thank you for all your prayers. We love you guys!

Nikki - mom to Teen Wonder

Tuesday, May 23, 2006 4:50 PM CDT

Zachary had a very bad night - we are heading over to the hospital now.

There are some things that you just can't do at home - making Zachary comfortable is something that we are having a hard time achieving here at home.

Thanks for all your prayers!! We love and appreciate everyone!

Nikki - Mom to Teen Wonder

Monday, May 22, 2006 11:45 AM CDT

Once again, Zachary had a peaceful sleep! THANK YOU JESUS!! You have no idea what it means until you watch your child struggle to get comfort and get peace and be able to get enough oxygen -

John and I have a new schedule thanks to Dr. Saving - we were able to sleep!!! I actually feel refreshed this morning. I know it's because we have so many faithful prayer warriors standing with us and believing for peace and comfort during this most difficult time. I can actually feel Jesus carry me through this - this is a time that I thought I would fall apart during and I'm not. I'm able to smile for Zachary and not cry right now in front of him.

As I cleaned Zachary up last night before bed and changed his dressing - He said today was a good day mom. Yes- it trully was. Kris & Chad came over and Zach had me talk to the two of them and you should have seen the 3 of them together. Zach finished his game that he was determined to finish before he goes home with Jesus. Kingdom Hearts2 - a Disney game. Talked to Chad and finished his game - and was comfortable all day long - a very productive day. He said except for having a hard time catching his breath a couple times. Thanks for all your prayers. It's my turn to hold his hand and be there for him. He doesn't want us to leave his side. He always wants a hand to hold. YEAH - It's my turn - How I love my Zachary!! Dr. Saving should be here any minute with some nurses from clinic that is pictured in the picture above.

Nikki - Mom to Teen Wonder

Sunday, May 21, 2006 9:15 AM CDT

For some reason I'm having difficulty loading pictures right now. I'll work on it!

Thanks for all those prayers!! Zachary had a much more peaceful sleep last night.

Kris spent the night last night - Zach knows how to pick his friends!! Thanks Vaupel Family! His Confirmation is today - he had little sleep.

John and I are trading off doing his meds. Zachary is on a very strict schedule and requires meds every hour. We are very very tired and just a little grouchy :-)!

I can't hear my Zachary tell me he loves me enough. I tell him I love him with my whole heart - he replies back, I know you do.

His Dr. should be here any minute - Dr. Kay Saving is one awesome Dr. This will be her 3rd home visit - She came yesterday and asked Zach if he wanted her to come back tomorrow - he said yes. God made sure we had the best Dr.'s during this whole thing.

We love and appreciate everyone!!

Nikki - Mom to Teen Wonder

Saturday, May 20, 2006 7:29 AM CDT

Thank you for all the encouraging words - we love and appreciate everyone!

We are home!!

Zach decided to come home last night - he came home to a surprise - His 8th Grade Graduation!!!! I'll post some pics of it. It was very very nice - we had so many visitors to come and watch him recieve his diploma. He's been talking about this now for 2 years. His best bud Kris and all of his friends were here.

Yesterday he told me there is one more person that God wanted him to talk to. Chad from school - I asked him what he wanted to tell him - he said he would know when he would talk to him.

Almost our whole family stayed here last night. It was really nice - this is very very hard and I can't even explain the mode that I'm in - in order to cope right now and smile for my Zachary.

Zach told me last night - he was trying to do everything God wanted him to help with before he goes and gets that perfect body in heaven.

This is very hard for me to tell you how Zachary is doing - he's getting oxygen at the fastest rate possible - his lungs are full of tumor - left lung almost no oxygen and his right very very little - tumors around his neck are also keeping him from breathing - he's getting around the clock very intense pain meds - he's filling up with fluid - it's so very hard for me to see him this way. I hate this cancer - yet, you can feel the presence of God around him. I don't know why all this is happening - one day we'll know - I told Zach he will find out when he gets to heaven.

Kylee is having a very hard time with everything - I love her so much too and I just hate to see her hurting!

How I love my Zachary!!

Nikki - Mom to Teen Wonder

Tuesday, May 16, 2006 10:50 PM CDT

It was so good to log into Zach's site and have so much encouraging messages to read!

I haven't left Zach's room since the last update. The last few days are such a blurr - I feel like I'm stuck in this awful nightmare. My husband and my brother kicked me out of the room tonight and made me come home. I'll probably be here just for a little bit. It's nice having a time to be able to just let out all of my emotions that I've been keeping bottled up the last few days.

Today has been an awful day for pain. Zach's ready to go to heaven and looks forward to it - but there is just something holding him here. It's almost like he is still in the fighting mode - it's the worst thing to watch your son just drift away little by little.

I gotta tell ya a funny today - which made everything all worth while. I got Zach undressed and got him seated in the shower and was scrubbing him. He's all hooked up to IV's and oxygen - afterwards he was done I lifted him up to sit him down in a chair so I could get him dressed. The door to the bathroom was wide open and a nurse was behind me - Zach decides to do a little dance butt naked - he didn't know it wasn't just me behind him seeing his cute little butt dance - until the nurse started laughing!! Too funny!! A memory that I have forever.

Zach's on all kind of pain meds and we're to the point of me having to make those painful decisions - should Zach be given so much meds that he's sedated and not suffering or do try and give him just enough where I can still enjoy the few moments of a smile that Zach just put on my face by being Zach. When will I have easy decisions to make?

Thanks so much for all your prayers! We love and appreciate everyone!!

Nikki - Mom to Teen Wonder

Saturday, May 13, 2006 3:41 PM CDT

Zachary asked to go to the hospital to get comfortable last night. He was oxygen hungary and very uncomfortable.

We are currently inpatient at OSF Children's Hospital. Zachary said he is ready to go to heaven. He can't wait to see Jesus and be all better.

I feel like I'm in a haze and can't believe I'm typing those words.

Last night when we got here - Zachary had 3 Mother's Day Cards for me and a gift to go with each card. Yes, this is my favorite Mother's Day. He said I had to get you each card because each one is true. How I love my Zachary!! John and Zach actually went shopping together about a week ago - so, it's everything Zach picked out himself.

Just pray that Zachary stays comfortable and stays peaceful.

Thanks for everyone's support!!

Nikki - Mom to Teen Wonder

Thursday, May 11, 2006 10:41 PM CDT

First thanks for everyone's prayers for Zachary and our family. This is a very emotionally draining time and being lifted up in prayer helps so much.

Last night Zachary was up in major pain and it took several boosts to get him comfortable. So, right now he is getting boosts every 2 hrs. along with his continuous IV pump of meds. - - - he's beginning to just hurt all over. Zachary is finally comfortable. Just keep those prayers coming. He slept all day - and when his buddy Kris came over tonight he perked up and was up with him. Thanks Kris - you mean so much to Zachary - you've always been the best medicine for Zachary! He had me tape a message for you on the video camera yesterday - just for you Kris!

Zach had lots of visitors - along with his grandma Schoenfeldt coming over with his favorite pies. Strawberry Rhubarb pies - Zach put a grin on his face.

Zach's hoping that some of his Nurses from St. Jude come over tomorrow - he just loved having them over Wednesday with Dr. Kay Saving - she's a busy Dr. - She's the Director of the Children's Hospital - also one of 2 Dr.s at the Midwest Affiliate for St. Jude! So, it meant alot to Zachary.

I'm actually going to try and get some rest right now. I haven't been to bed befor 2:00 a.m. since - I can't remember when. I just gave him a boost of meds and it's John's turn next :-0! Zach hasn't went pee - so, his body is showing signs of slowing down.

Visitors are welcome!

We love you guys and appreciate everything!

Nikki - Mom to Teen Wonder

Wednesday, May 10, 2006 5:31 PM CDT

Our internet service decided to upgrade to a new server and we were unable to login until now. What an upgrade!!?? :-)

I was in awe of all the encouraging messages in the guestbook. I really appreciate each and every entry. It is such a special feeling to know that Zachary has touched so many lives.

Zach's Dr. - Dr. Saving and his nurses - Sue & Beth decided to come over yesterday to check up on Zachary. They told him that the nurses were arguing who got to come over - with it being clinic day only 2 were able to come - So, Zach invited everyone over for a pizza party. He sat up with a smile on his face and said mom - they are all here just for me. That made his day!!! They couldn't go without Zachary telling them that he loves them and giving them a hug. He really has a close bond with them all - after 9 years - days of all day treatments - they are like family!

Zach is retaining fluid and his tumors are rapidly growing. Zachary is fighting - he is determined - he still is trying so hard to make sure everyone around him has a smile and is not sad.

He's been wanting a bearded dragon for a long time - so, John and I went out and surprised him with one. He named him Spike. We have to read a book how to take care of them - they are very particular about their environment & food.

Thanks for everyone's prayers and encouraging words!

Nikki - Mom to Teen Wonder

Monday, May 8, 2006 1:31 AM CDT

It's so hard to sleep - just don't want to waist one moment sleeping when I could hear my Zachary tell me he loves me. I don't want to be asleep at a moment that could be his last here on this earth.

Zachary has started to show signs of his organs shutting down - Zachary being Zachary will never just give up. I'm struggling just seeing his body change like it has just in 24 hours.

Trying to imagine what it would be like to have Zachary all better here - getting excited because he would be a Freshmen this next school year.

Hurt - that word - will never come close to explaining how my heart feels right now, Lost - it's closer, scared - not knowing, a parent can never prepare themselves for possibly giving their child back to God - I want him here with me - he's so precious and so loving and just everything I could ever want in a son and more. He's my best friend.

I do want everyone to know that your encouraging words mean so much right now. It means so much that there are so many praying for us - knowing that so many love my Zachary too.

Thanks,

Nikki - Mom to Teen Wonder

Friday, May 5, 2006 11:57 AM CDT

We are enjoying all the encouraging messages in the guestbook - Thanks!! It's nice to find out who checks up on Zachary - I'm horrible at not signing other guestbooks - Zach has me check on Chassity, Christi, Madelyn, Jake and Brent - All but 1 have Neuroblastoma - it's amazing how similar these kids are! He used to check on a few others but, they are in heaven now - he still has me check on their moms - like Stanton's and Emmagrace's - He's so worried about me - so he likes checking on the mom's to see how they are doing having to wait to see them again - like Zach says - on the Flip Side - - - Heaven

Anyway, Zachary - His pain issues have been very manageable until last night. He's been trying to stay more alert - so trying to not take so much of them all day long. But that is all changing today - he has to keep them steady all day long - because it was hard to get it under control last night.

His tumors are growing so fast - his skin is having a hard time keeping up and is very red from the rapid growth. He has lymphedema in his left arm from the tumors. You can see in the picture that his left side is so filled with tumors - I feel so numb at times - then all of a sudden I sob - and I can't control my tears - they just keep coming. I sometimes feel like I could loose it at any moment. I just keep picturing when I gave birth to him and holding him for the first time and all the dreams that I have for him - I try so hard to hold on to those.

Thanks for all your prayers!

Nikki - Mom to Teen Wonder

Monday, May 1, 2006 1:04 PM CDT

The family got together and stayed at Grand Bear Lodge at Starved Rock - the cabin that sleeps 18. It was very nice and we had a lot of fun together. It had 3 fireplaces, 2 jacuzzi's, 4 bathrooms - it was very nice. It has an indoor waterpark and also an indoor amusement park with 9 rides (small I know) but it was very clean and nice. The kids had a blast! The best part . . . it had Zach's favorite ride - tilt a whirl - a classic - Zach had the biggest smile on his face. Because of everything Zach has to do in order to swim - along with getting boosts of meds and all and only being able to be in the water for 30 min. - he kept that for the finale. All his uncles and aunts pushed him around in the lazy river then went in the wave pool. Because of his need for oxygen - and needing his meds it was short lived - but he had a very good time.

This was a very precious time with the whole family. Just in the few days Zach's tumors have grown alot. He's on oxygen all the time and he has been sleeping alot more. Little of Zach slips away - this is a very emotional and draining time.

My favorite part - when Zach looks at me and says mom - my favorite ride - do ya think I can get on it. I told him sure get on there - That smile - he gave me a hug and hopped on the ride - he put his head back against the back of the seat - sat the in the middle and rode the ride all by himself with the biggest smile!

How I love my Zachary!

Thanks to everyone that has signed Zach's guestbook - it was nice coming home and reading the entries. I loved them!

Nikki - Mom to teen Wonder

Monday, May 1, 2006 1:04 PM CDT

Wednesday, April 26, 2006 7:35 PM CDT

Today we've been so busy with Kylee and celebrating her 11th Birthday. I can't believe how big she is getting. We just got home from taking her out to eat and shopping. Almost a teenager!!!

Zach's has had some good moments today and was able to go with us. He pushes himself to do everything - even when he really doesn't feel up to it. He doesn't want to give in - to him that is letting the cancer win - it is a fight each second. My sister smokes and Zach hates it - - - anyway he told her that he fights cancer everyday to stay alive - can't you fight the urge to stop smoking and try not to get cancer. Maybe that will get my sister to stop! :-)

Zach's tumors - you can see that they are getting bigger - it't just something not talked about in the house and try and be as normal as possible - - - only we treasure each moment - probably more than other families - I know it's easy to take it for granted. Very emotional - very very very emotional - I'm so worn out - I try so hard to be so happy for Zachary - I just hate watching the cancer steal a little of my Zachary each day. I hate it - I hate this feeling -

Thanks for everyone's prayers - your encouraging words really do help!! Do you know what would really make everything all better? . . . - Zach's Miracle!

Nikki - Mom to Teen Wonder

Tuesday, April 18, 2006 5:14 PM CDT

Every day my Zachary amazes me.

One thing I know for sure - HE'S NOT A QUITTER!

He is in a battle for his life. He looks at his life and doesn't want any pitty - No COMPLAINTS FROM HIM - Only smiles and jokes. Trying to get the people around him happy. He looks at his life and tells me he's had an awesome life. I look back at my pictures of myself at his age Only 13 years old - What was my biggest struggle then - maybe having to babysit on a night that I didn't want to because something better has come up. Never anything I went through would come even close to what my son has endured for 9 years. This June it will be 9 years of fighting Neuroblastoma. He knows what the meaning is of life. Knowledge of something so precious in a 13 year old body. I have learned this only from him. My gift from God. My son - Zachary. Learning from him - my priorities - the meaning of life and how not to take it for granted - how to take what you have and make it good.

How I love my Zachary!!

Nikki - Mom to Teen Wonder

Updating on Zachary - very hard . . .

At his St. Jude visit on Tuesday - The Dr. could feel and see several new tumors in chest, kneck, abdomen, back areas - so, as oddly as his Neuroblastoma has behaved since July 05 it seems as though it is progressing really fast the past few days. God kept it under control - there is a plan - I don't know why. Truthfully it was a miracle that Zach has made it this far. Zach has nothing to complain about - - -

After all this time you would think I wouldn't have a problem typing those words --- The reality - boy do I wish everything would go back to him being all better . . .

Friday, April 14, 2006 9:16 PM CDT

We just got home after 3 days away from home. We had a nice time. I've noticed that my anxiety is really really bad right now. I have a hard time being away from the house and traveling in heavy traffic - I didn't even do the driving - but it made me a nervous wreck. Plus I cry all the time - just hearing a song and a memory comes to mind and it's with Zach healthy - I crumble - I would do ANYTHING TO have those times back. I feel like I'm stuck in my worst nightmare and there is no way out. I feel like I'm in a room with the walls coming in and I can't breathe.

Upon our return I learned that our Cousin Anthony is in heaven. I know a perfect healing - It's realizing that his parents have to wait to hold him again in heaven. He has no more pain - he's perfect now and I'm sure playing hockey.

A few prayer requests:

Pray for Chassity (her website is on the bottom) that this high dose chemo will work and get rid of her NB

Pray for Zach - his miracle will happen

Pray for Anthony's parents - I'm sure they feel lost

We love and appreciate you guys!!

Nikki - Mom to Teen Wonder

Sunday, April 9, 2006 3:50 PM CDT

Sometimes just updating about my Zachary -

A year ago we were in California enjoying awesome times together. Zachary not feeling good after having high doses of chemo and to learn that it was doing nothing to his tumor load. Zachs body just couldn't tolerate any more chemo after so many years of high dose. We went to Rainforest Cafe it just so happened it was my Birthday and a group of waiters was coming my way with a cake - - - I looked around for my dear Zachary (he was behind them with a huge smile) he snuck and told them it was my Birthday. He sat in his wheel chair with the biggest smile on his beautiful face with his head held high - mouthing the words to me - I love you - A birthday I will never forget. It was a Birthday that I spent not knowing if my birthday would come around again with that beautiful smile to see or I would have to close my eyes and bring that memory to life. For Zachary will always - ALWAYS - live in my heart - And I just thank God every moment that he is here with me on this earth.

Zachary is such a special Gift - A God given Gift - no other person has taught me as much as my son has. He has taught so many people what life is about - with a smile on his face all the time.

How I love my Zachary. Please keep him in your prayers - he hasn't ate anything and isn't able to keep nothing down. We are on an Ensure thing - trying to keep someting down.

Thank you - we love you guys!

Nikki - Mom to Teen Wonder

Friday, March 31, 2006 12:27 AM CST

UPDATE: SAT. 10:30 a.m. - Zachary's lips are much better after a few days of hydration and lip balm :-) Also, he's been walking around this morning - oh and last night he didn't need his oxygen!! Yeah - What a fighter!! He's working out this morning trying to get ready for his best bud to come over - Kris. Kris is spending the night - that is always a good fix for Zach's spirits :-0!
**************************************

I can't believe how it's been a week since I've updated and how things change so much in just a few short days!

Thanks for all your prayers -

Zachary has not been feeling good at all and has been getting sick. His lips were cracking and bleeding and after talking to the Dr. they put him on some fluids and he's on oxygen again. He was dehydrated and just not feeling good. It's not the flu - it's just whatever is going on in his body.

The Dr. could feel alot of progression after talking with him on the phone - not around my dear Zachary. I want so much for his miracle to occur - at any moment. In the middle of all of this I still have peace - knowing that God has in mind the BEST answer to this whole thing. I have pictured in my mind Zachary's heaven - He's playing basketball with his dear old mom on the side lines screaming so loud - watching my son in a perfect body running up and down the court with a huge smile - showing off to me his perfect self -

I tucked him in bed like I always do - I looked in his eyes and felt like I should tell him that he never lets me down and he makes me so proud - he whispered I know I do mom.

How I love my Zachary!!

Saturday, March 25, 2006 9:24 AM CST

Thank you guys so much for the encouraging words and all your prayers!

Zach has much more color in his face - his rosy cheeks are back! For so long he has been so pail and bruising all over. He doesn't have any new bruises the few days and there has only been once in a whole week that his pain reached a 10 on the pain scale. We had just given his IV meds and a few moments later he was comfortable!! YEAH! Overall he has had more good days (of course our good days now would have been considered horrible days a year ago - our perception of things these days are a little twisted I know) - So, now I consider most days good - only a couple of bad days - That's what we do - take one day at a time and having HOPE helps so much. A parent can't live with my child will die at any moment - It's impossible to walk around with a smile on your face and enjoy the moments you have.

I have to have HOPE with a son that is believing in this huge miracle - I HAVE to be on his side - It gives him hope with parents believing with him. It just makes this environment much better - Not as emotional and happiness. Because it is a gift for each moment that we have as a family and I don't ever want it to be ruined with us walking around with no hope - Family time is a treasure and I'm not going to let it be ruined with the mind games that Satan dishes out. We've been down that road! It is so easy when you have Dr.s, nurses, and Pschologists telling you that you need to prepare - Hogwash - No one KNOWS except for God when we will go HOME and I'm not going to let my mind in that horrible game again!!

Keep up your prayers - It's truly is a daily struggle!

We love you guys!

Nikki - Mom to Teen Wonder

Sunday, March 19, 2006 9:56 PM CST

Ok, the way I see it - - - Everyone is about to witness a miracle!

Why - I'm at a point in this whole thing that God knows that I can't take any more. Enough - Zach has to go back to being all better. Not any more pain - - - Zach's body has to be restored - HAS TO -- - - - - did YOU ALL HERE ME!!????? :-) I am not going to get on this computer one day and have to tell everyone that his body wasn't restored here on this earth. I'm not going to - I refuse - One day really really soon the update will be to tell you that Zach's Miracle happened - and it's right here on this earth.

I know I know - it does sound to everyone out in the world and I know for sure the Dr.s I've really lost it this time - But my son is believing in this miracle. I'm his mom - he's getting his strength from someone - that someone has to be God. Right now he's asking for all his meds but yet has a smile on his beautiful face.

Please keep us all your prayers - and you will see soon - the fruits of your faithfulness! I promise - God promises -

God Bless - We love and appreciate everyone - - -

Nikki - Mom to Teen Wonder

Tuesday, March 14, 2006 5:58 PM CST

Just haven't been in the mood to update lately . . . plus very busy with Zachary & the house.

Zach just has not been feeling good the last few days - just really laying around and not eating much. Needing extra boosts of IV meds.

Yesterday - Zachary was excited to have furniture delivered and is enjoying his own recliner :-) You should see his smile! I'll have to update with new pics!

Thanks for everyones prayers we appreciate everyone!

Love you guys!

Nikki - Mom to Teen Wonder

Monday, March 6, 2006 10:10 AM CST

My hubby is at work and I finally have a break from the remodeling . . . well, at least until he gets home from work :-). Only now I'm busy doing laundry and taking care of 2 sick kids - Kylee is home with the flu and Zachary . . . well, Zach is still sleeping which is a very good sign of keeping the pain controlled :-)

Zach had a really good day Friday - Saturday was ok and then yesterday was a really bad day. He went with us for supper at Mickeys (Zach seen one of his favorite teachers - Miss Volmer there - his 2nd grade teacher) - he ended up eating a few bites of ravioli - as he layed his head on the table. His blood counts are really messed up - after having a child on chemo for so many years you start to just know the signs of needing blood. I guess we are at the point that the Dr.s aren't giving him blood products - which I've been really upset over - after long heated discussions - - -

Zach seen Alyssa at the game and forgot to mention that - he remembered to tell his grandma because he was too embarrased to mention the hot girls - he sat in front of the cheerleaders - that he remembered :-O Signs of being a real teenager :-) His cousin Chad (Senior in high school) took him to the game - he was so excited - no adults!!!! He didn't want me tagging along :-O! Yet, another sign of being a teenager!!!!

I want to tell everyone how thankful we are of all the messages in the guestbook!! And the awesome prayer warriors!!!! It means so much!!!!

We love you guys and appreciate you!

Nikki - Mom to Teen Wonder

Wednesday, March 1, 2006 9:57 PM CST

Sorry for such a delay in updates. Several reasons - Zach has been having a very rough time - spending quality time and working on the house (remodeling).

It was really nice to read a guestbook entry from Phyllis and to find out that she is a prayer warrior for Zachary - here's the entry that meant so much - more than you know: "My Life Is In Your Hands"

You don't have to worry
And don't you be afraid
Joy comes in the morning
Troubles they don't last always
For there's a friend in Jesus
Who will wipe your tears away
And if your heart is broken
Just lift your hands and say

Oh
I know that I can make it
I know that I can stand
No matter what may come my way
My life is in your hands

With Jesus I can take it
With Him I know I can stand
No matter what may come my way
My life is in your hands

So when your tests and trials
They seem to get you down
And all your friends and loved ones
Are nowhere to be found
Remember there's a friend in Jesus
Who will wipe your tears away
And if you heart is broken
Just lift your hands and say

Oh
I know that I can make it
I know that I can stand
No matter what may come my way
My life is in your hands

With Jesus I can take it
With Him I know I can stand
No matter what may come my way
My life is in your hands

People we don't know has been calling us and telling us that they felt that God wanted to let us know that he hasn't forgotten about us and that he loves us very much. This journey has been so hard and starting Sunday Zachary started to ache all over and Monday Zachary was in a lot of pain and very hard to get it under control. Yesterday wasn't good - last night it was more under control and this morning he said he felt awesome. He's still needing all his meds - but, he felt like doing something. His cousin came by and picked him up and took him to a game. He had a blast!!! Thanks Chad - you made his night.

I was a little clutzy today - fell in front of a store hit my head knocked myself out and I thought boke my hand - after x-rays I didn't break it - the Dr. said that it looks like I sprained it good - swelled & black & blue - big knot on my head and fell on my knee once again - I believe that is like the 3rd time in the last week or two. So embarrasing - that it was - I was shopping with my sisters - they went into the store - and after I was missing for some time they decided they should look for me because I never made it into the store - I was sitting on a bench out in front crying - - - So, a little crazy around here - - -

Thanks for everyone's prayers - we need them :-)

Love you guys!

Nikki - mom to Teen Wonder

Tuesday, February 21, 2006 7:59 AM CST

I HATE HATE HATE HATE HATE HATE ALL THIS CANCER / NEUROBLASTOMA STUFF. I'M GOING THROUGH A VERY ANGRY STAGE WITH ALL OF THIS. It could be because everyday for the last - well since July my son carries around IV bags full of narcotics to take his pain away - he's on such a high dose now that he has to take seizure meds because it causes him to jerk plus a whole lot of other IV meds that I have to draw up every day every 4 - 8 hrs. and do you have any idea how much I would enjoy just being his mom - I found out yesterday that Chassity relapsed (she is also a teen with Neuroblastoma) - Our cousin Anthony has a different kind of cancer but also relapsed - I realize how I can't let all of this cause me to be so angry and that I need to be happy for Zachary and enjoy life. It's so hard we live the reality of everything day in and day out. We don't have the luxury of coming over to visit and going back home to live a perfectly normal life and pretend that Zach will be ok. Living this reality is so very much draining . . . but yet so very real. It's a constant struggle to give Zach all the meds he needs to keep him comfortable - day in and day out - yet he does it with a huge smile on his face - I don't know how - but he does even joking with me to get me to smile. How I love my Zachary.

Zach's body - the tumors are very visible. I hurt so bad for him - every day he wakes up and he just knows that those tumors are gone - then he comes to me and asks me if I think they are smaller - I tell him he looks good today and ask him if he feels up to doing anything - he always makes that possible :-) I try and just not talk about it - it's very obvious that Zach doesn't want to talk about it. Every day he checks for the tumors to be gone. I pray every night for this.

Thank you for everyone's support! We love you guys!

Nikki - Mom to Teen Wonder

Friday, February 17, 2006 11:39 AM CST

Well, John has been away on business since the 14th - I feel so lost without him here. It's weird how I always did things on my own - but when I'm used to working as a team and half the team is gone - it's hard to function. I can totally see where John picks up the slack and just does what needs to be done and now it's not getting done.

Zach started having a rough day yesterday evening and is still experiencing pain. So, please pray that it will go away. It's so hard - - -

Yet, in the middle of all this - God is right in the middle of everything giving peace. He never gives us more than we can handle - it just makes us stronger.

Zach helped me this morning with giving Jasper a shower and brushing him - You should have seen him after the shower - Zach put a red hoody on him and he looked so cute!

Thanks for everyones prayers - we love you guys!!

Nikki - Mom to Teen Wonder

Wednesday, February 15, 2006 8:10 AM CST

Zachary wanted me to thank everyone for the very nice Valentine Cards! He loves getting cards in the mail.

Zachary woke up yesterday afternoon and said that he wanted to try and go to school - he got there around 2:00 - just in time for the party. This was his first time since - well, before Christmas Break. How exciting for Zachary. He did feel a little like he wasn't in the right place. It seemed as though . . . well, for him he said that he felt like he was invisible - like he was there but could not be seen. I watched him as he sat in the back - I just wanted to crawl in a hole so no one could see my tears -

Zachary - some days he sleeps the whole day away and some - he's awake and just not comfortable - The connection that Zachary and I have is so unusual - Especially for a Mother and son - We don't even have to say anything to each other and we know exactly what each other is thinking.

All his meds seem to be keeping his pain at a managable level. For this we thank God. It's a HUGE HUGE miracle that Zachary is still here - for the Dr.s they can't believe it - but they can experience it by sight - each day that Zachary comes wheeling into St. Jude - Do you have any idea of how PROUD I am to wheel my son in there . . . ???? Along with his smart come backs that puts a smile on everyones face . . . How I love my Zachary! The feeling I get that I look over in the passenger seat and see Zachary right there next to me - I am full of smiles - Zach puts his hand out and wants to hold my hand and says - mom, I love you! If it wasn't for you - I wouldn't be here today.

Thanks for all your prayers!!

We love you guys!

Nikki - mom to Teen Wonder

Monday, February 13, 2006 11:11 AM CST

Sorry for the delay in updates. John got a babysitter for the weekend (my mom stayed with Zach & Kylee) and we had a wonderful Valentines together. He is such a wonderful husband!

Plus, we are working on the house - putting new flooring in and remodeling all the rooms. So, that has made us very busy. I need something to put my mind to work - other than worrying about my Zachary. It can be very heartbreaking.

Zachary is doing better - he's not coughing up blood and having nose bleeds. He's hanging in there - the meds are still doing a wonderful job at keeping his pain at a very low level. For that I thank God - and all you prayer warriors out there for my Zachary. Thank you, thank you, thank you!!!!!!!!!!!!

We love you guys! Happy Valentines Day!

Nikki - Mom to Teen Wonder

Wednesday, February 8, 2006 8:32 AM CST

We went to St. Judes yesterday in Peoria. Zach has been having trouble breathing - his pulse/ox. is low - which would be the reason for his troubles. His tumor in his chest that stretches under his left arm / back - has gotten noticably bigger the last couple of days - I'm so scared - - - He says that when he grabs a part of it - it relieves the pain in his back. When they listen to his lungs the left lung - hardly any air is moving through it. The meds are working - it's just one of the drugs they don't like giving it more than 5 days in a row and Zach has now been on it for a 9 days.

But, none of that matters - it doesn't change the way that I think. In order to cope with everything - I give Praise to God for each moment that I have with him and thank him for each memory I have with Zach in it. Zach is the most awesome son - The love he gives to everyone - I'm just thankful that I am his mom - God chose me - That is how I cope!

Thanks for everyone's prayers - Zach is more peaceful and his pain is more managed.

We love you guys!

Nikki - Mom to Teen Wonder

Saturday, February 4, 2006 9:15 AM CST

Hey Aunt Mandi - Tell Uncle Tim it was Springfield NOT St. Louis :-)

We surprised Zach and took him to his favorite place to eat - with him eating now - Smokey Bones - along with his best friend Kris. Zach's favorite thing is their Cinn. Apples - so he ordered 2 sides of that! Also Zach & Kris wanted to go shopping - so we stopped by White Oaks Mall. Kris is such a good friend - he pushed Zach in his chair and when Zach said he had to go pee - Kris gave Zach a speedy ride and ran to the bathrooms. You should have seen the smile on Zach :-) But, the smile on his face on the way back from the bathrooms - Of course you can probably guess why . . . 2 teenage boys on their own - Hot Girls - !! I got to hear just how hot they were :-)

Well, Zach's combination of all his drugs with the continuous drip & demand - Zach is much more comfortable. He is finally sleeping!!! You would think as much drugs as he was on before he would of slept - but, I guess his pain was so bad that he couldn't sleep. As soon as they started adding the different drugs he is much more comfortable. He sleeps about 90f the day - but as long as he is comfortable that's what matters.

Well, Zach's friend Kris is up and hungary :-) What am I saying . . . Kris is always hungary and also the first one to say ooh I lost 3 lbs.

I thought I would share a little about Zach - to those that know him from the net - Zach hasn't been able to control much in his life - the things he can control - ohh boy watch out - because that he does and does it well! Here's an example - he wanted to eat breakfast yesterday after he awoke - well about 1:00 p.m. not too many places serves breakfast - so, off to Ernies we went - Zach ordered - white toast not sliced - buttered - but not soggy - fried egg hard - but the yolk a little mushy - with american cheese slice melted on top - not shredded cheese - bacon - crispy - about 4 slices and no water - I brought in my own bottle of Avian water - I just had a smile on my face as the waitress was frantically writing the instructions - Zach got so mad at me for laughing - I'm used to those strict instructions on how Zachary wants his stuff to be served - it's weird how I'm just so used to that and I love to cater to his needs - then when an outsider waits on my son - I'm sure they are thinking - wow - very high maintenance - but hey - I love it :-)

Thanks for everyone's prayers and support!! It means so much and is so encouraging to here how Zach has touched your lives. Thanks Alyssa for your e-mail!

Nikki - Mom to Teen Wonder

Monday, January 30, 2006 9:21 PM CST

UPDATE 1/31 - Well, we are home!!! Zach wanted to go to Olive Garden for a celebration that he is feeling and looking so good and out of the hospital. I really don't care that someone is having to give him meds every 2 hrs. - you should see the difference the new meds have made!! As long as my Zachary is feeling good - I'm feeling good even without sleep :-) Thanks for all your encouraging words! Hey Kris - are ya up to having a weekend at our house - Zach would love having you over for a night!

I thought I'd let everyone know that Zach has been in patient since last night.

He's already feeling much much much better!!!! By Saturday he was miserable. He didn't sleep, eat - nothing - just lay there and was throwing up - hurting & jerking.

His pain is much more managed right now and just continue the prayers that it stays that way. I can already see a huge difference in him since Saturday. He even ate a little and kept it down last night and today!!!!!! That in it self is a miracle - he hasn't ate good since . . . I can't remember when! All I can say is Thank You God!

So, all in all - this in-patient visit is turning out to be the opposite of what I thought we were going to walk away with. We will have a Zach back that is able to do things and have good moments . . . just with different meds.

So, how does having Hope and Determination play into all of this???? My Zach is a walking witness - Everyday! - with a smile on his face with Hope in his Heart and will to live life - even with having the amount of pain he has - I just thank God every day for my Zachary! I just pray that he touches your lives like he does every day of mine. How I love my Zachary!! I think of how many times a Dr. has told me that Zach has maybe 48 hrs. to live and now - he continues to make a difference in someone life each and every day. It's very heart breaking for a parent to be told that - and to watch him in so much pain - but then I think - what would I be doing without him here???

Thank you so much for your prayers and support!!

Nikki - Mom to Teen Wonder

Monday, January 30, 2006 9:21 PM CST

I thought I'd let everyone know that Zach has been in patient since last night.

He's already feeling much much much better!!!! By Saturday he was miserable. He didn't sleep, eat - nothing - just lay there and was throwing up - hurting & jerking.

His pain is much more managed right now and just continue the prayers that it stays that way. I can already see a huge difference in him since Saturday. He even ate a little and kept it down last night and today!!!!!! That in it self is a miracle - he hasn't ate good since . . . I can't remember when! All I can say is Thank You God!

So, all in all - this in-patient visit is turning out to be the opposite of what I thought we were going to walk away with. We will have a Zach back that is able to do things and have good moments . . . just with different meds.

So, how does having Hope and Determination play into all of this???? My Zach is a walking witness - Everyday! - with a smile on his face with Hope in his Heart and will to live life - even with having the amount of pain he has - I just thank God every day for my Zachary! I just pray that he touches your lives like he does every day of mine. How I love my Zachary!! I think of how many times a Dr. has told me that Zach has maybe 48 hrs. to live and now - he continues to make a difference in someone life each and every day. It's very heart breaking for a parent to be told that - and to watch him in so much pain - but then I think - what would I be doing without him here???

Thank you so much for your prayers and support!!

Nikki - Mom to Teen Wonder

Thursday, January 26, 2006 9:57 AM CST

Update: 10:00 p.m.

We added 2 new drugs to the mix - I can already notice that Zachary is feeling much better. Just keep those prayers coming! Pray that he will be able to sleep tonight and not have pain. - Mom to Teen Wonder

Please just pray for peace for Zachary. Zachary has been up all night in pain - we are trying everything to get the pain under control. His dilauded is at 350 mg/per hr. - his Ativan is 14 mg - 2-3 hrs. and his diazepam is 35 mg. every 4-6 hrs. - and he is still awake in pain.

We are headed to St. Jude in Peoria - so please pray that we find him some new meds that work. We already know that morphine and phentynol doesn't work. So, we are kind of limited and boy is my Zachary a fighter!!!

A very emotional time for this family - so tired of seeing Zach hurting - we are just wanting him to find comfort.

Thanks for your prayers and support! I know that I've messed up the spelling on things - but my brain just isn't up to working.

Nikki - mom to Teen Wonder

Monday, January 23, 2006 6:33 PM CST

It used to be every morning I'd wake up and just hang out with Zach in his room - just the two of us during the week. Kylee at school and John at work.

Yesterday morning I decided - I'm making a bed for Zachary out in the sunroom - I'm tired of waiting till he got better for him to come out on his own. Those moments are few and far between. How I long for good moments. You just hold on to the last awesome memory and try and just have another one. Hard to understand - fully understand what changes lie ahead. How my heart breaks . . .

I was tired of going on with day to day stuff and where was my Zachary - in his room - my thinking - he's going to get better - he'll be walking out here when he wakes up and feels good - - - then I realized that I better just make him a bed right in the middle of the action. I'm glad I did - because Zach still has those quick comebacks when he's awake . . . Yesterday - we were watching National Geographic - a guy talking about the most deadliest snakes and as he was talking about this one particular snake - being the most deadliest and he reached over to touch it - Zach says for the guy - and now I'm going to play with him :-) Zach's not to fond of snakes or spiders but he loves watching National Geographic. Even when Zach's asleep - we have his favorite shows playing.

How I love my Zachary. So much changes in just one day around here.

Thanks for everyone's support!!

Nikki - Mom to Teen Wonder

Thursday, January 19, 2006 4:03 PM CST

Well, Zachary started the morning off not so good. I had enough of Zachary throwing up and not able to control it with anything. Plus, Zach found a few new spots that was concerning.

Well, Zach got a few new medications added to his pharmacy here at home :-) and hopefully this will take care of the immediate problem.

How about the new pictures . . . .!!! That was a neat time with Zach - to watch him see the Globetrotters in person. I think his favorite time was hanging out with them and getting their signatures on his ball and his t-shirt!

Thanks for everyone's encouragement and prayers!

Love you guys.

Nikki - Mom to Teen Wonder

Tuesday, January 17, 2006 12:01 AM CST

Wow - a week just flew by!

Zach had 3 good days in a row! Saturday - Monday - really nice to share some special time with everyone. Zach had Kris spend the night on Suday and they hung out all day Monday.

Today, he woke up just not feeling good at all. I've been giving him IV meds around the clock - and has been able to keep the pain to a minimal. I just can't keep him from getting sick. He has all the meds for nausea - it's just not doing the job. I talked with the Dr. and there's nothing more to give him.

I'm hoping that he will perk up here and we can go do something - just the two of us.

Thanks for everyone's prayers and encouragment!!

Nikki - Mom to Teen Wonder

Wednesday, January 11, 2006 8:44 PM CST

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Here's Jasper (new puppy) and Spanky (one of Zach's 2004 Christmas presents) - what did I say - they would soon be best buds. You should see them - they are so funny together. It is just what Spanky needed. Zach lays around so much and just not able to be active with Spanky - and now Zach gets to enjoy those two playing and snuggles with both dogs because they wear each other out :-)

Zach - My Zachary amazes me so much. I am speechless every time I try to describe how proud I am of him. What he does every day to make everyone around him happy and trys to take the worries away from each of us. He keeps so much to himself - in fear of me getting worked up. He will even go without requesting pain meds right when he needs them - because he doesn't want me to get all upset. I helped him get dressed last night - and discover that there are tumors that are visible just by him sitting there. He said don't worry mom - they are just bumps that have nothing to do with Neuroblastoma. His chest area you can visibly see them - I believe my heart stopped for a second at the same time my stomach was in my throat -

Zach said that he has cried out to God to take him home - and he's still here - God has a purpose for him - and he's not done with it yet. My heart is so heavy - watching him go through what he goes through day after day - this is no life for a child. My Zachary so amazing - I'm told all the time what a neat and awesome kid I have - yeah - so many "normal" kid things Zachary has never experienced - yet, he doesn't know - he doesn't know what it would be like to be "normal" - he asked me one time - Mom, what is it like to be "normal" - it was at that moment I realized the extent of what this cancer has done - this June it will be 9 years - 9 years of living this life - 9 years of my Zachary having surgeries, chemos, radiation therapies, putting my son through phase 1 studies - yet - after fighting so hard - this is what he is going through. . . .

The support that I get from everyone is so amazing - I could never explain what it means to us - Thank you so much for all the prayers, love and support. Thank You!

Nikki - Mom to Teen Wonder

Monday, January 9, 2006 1:27 PM CST

Well, Zach isn't feeling good. Getting sick and just not himself.

I'm worn out mentally and physically and just unable to function. I feel - well, just so -

I'm sorry but I'm at a loss for words and just not able to do an update. How long - why - what now - what are we to do - full of emotion - and just not settled - I'm just at a loss - loss for words - loss for direction - loss of myself - and I don't know if it's because since March of 2004 I've put my life aside to take care of my Zachary - and now - ?

Thanks for everyone's support - - -

Nikki - mom to Teen Wonder

Thursday, January 5, 2006 5:31 PM CST

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Zach & Jasper sleeping together. (1/5/06) WARNING: No poking with sticks - you don't want to wake up the BEAR :-)! Just kidding - Zach just wasn't feeling good today. He was fighting it all day - would walk over to sit by ya to be social and just fall asleep.

He did - however have me take him to Wal-Mart. Did I mention Zach is a shopper!!!:-) Well, he got a chair with a basket in the front (he is very worn out) - he is such a clean freak - every time I would put something in the basket he was there rearranging the basket - lining everything up. He found himself a pug calendar - The front picture looks like Spanky.

Well, I'm going back to give him some meds and try and get an hour or two of sleep. I'm sooooooo tired - with giving Zach meds around the clock with extra pushes and the puppy - I don't get any sleep.

Thanks for all your prayers!!

Nikki - Mom to Teen Wonder

Tuesday, January 3, 2006 3:11 PM CST

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Picture is actually dated 1/3/06

Update: After confusing Spanky - the new puppy's name is Jasper.

Zachary & Spanky got a surprise today!! I bought him a miniature schnauzer - Zach named him Sparky. Spanky needed a playmate!! The house needed some cheering up to do!

It was so good to see that smile back on his face. Zach is sleeping on the couch right now with Sparky cuddled in between his arm - they look so cute!!

He's 6 wks. old and just adorable. Spanky just sniffs at him - I'm sure he can't wait to play - Sparky is a little young yet. I'm sure in a few weeks they will be the best of buds. Kylee is going to be so surprised!!! Can't wait. Kylee is having a very rough time with everything that is going on.

Thanks for everyone's support!!

Nikki - mom to Teen Wonder

Sunday, January 1, 2006 8:26 PM CST

HAPPY NEW YEAR!!

It was so nice to have so many friends and family here bringing in the new year together!

Zach had a sleepover last night - ohhh about 30 stayed over! It was alot of fun! It's nice when we are going through this . . . so many people here to keep you busy - it was the best new year celebration! We had fireworks, horns, confetti, big mouths - and just - well, I believe we woke up the whole neighborhood!!! :-) Memories that will never be forgotten!

We have better control over Zach's pain issues. He was able to enjoy his time with his friends and family! This is just a constant issue - making sure we give enough meds. and making my son comfortable. Thanks for everyone's support!!

We love you!

Nikki - Mom to the Teen Wonder

Wednesday, December 28, 2005 2:40 PM CST

Zachary is sleeping peacefully - that is the #1 goal - keep Zachary comfortable and pain free.

My heart is hurting - the unknown - giving my son so many meds to put him to sleep.

I guess my main concern was to get the pain under control and we have accomplished that. One thing for sure - Zachary is a FIGHTER! A true fighter - someone that will not just give up.

He told me yesterday to lets pretend that he is going to his University of choice and he's getting ready to start. Which University you ask . . . U of I! So, we wanted to paint his room navy and orange - but, that's not a good idea for his pulmonary functions. He said to lets do that instead of talking about heaven. He just wants to have his questions answered about heaven when he is ready. Right now - he would like to pretend he's attending U of I. My son does have a good way to look at things and cope - doesn't he. He makes me so proud!!

How I love my Zachary!

Nikki - Mom to THE TEEN WONDER

Monday, December 26, 2005 9:50 AM CST

I'm having such a hard time - with how to share things and what to say. The more positive entries - the better I feel when I'm done and I'm walking away from the computer with hope and fear of what really is going on and just hurting so bad. Not wanting anyone to know what really is going on. Do they really want to know - or do they want the feeling of well, that Zachary is doing ok.

Well, you can tell by the picture - Zach's morning was a morning that he was able to walk out of his bedroom after all his extra boosts of meds and enjoy a Christmas morning with a smile (of course when does Zachary not have a smile on his face). I was having a hard time just putting a smile on my face. I know what you're thinking - I kept telling myself the same thing - I'm waking up on Christmas this year and I get to watch my son's facial expressions as he opens his gifts and love on him - what more could I want. Well, behind the scenes - the reality is that Zach has been hickuping for a couple of weeks and the last couple days has been horrible - the pain - one minute Zachary was helping to cut the ham - the next he was on the floor in a ball crying out in pain. The last 12 hrs. has been the hardest yet. Full of emotions. Full of tears as I snuggled with MY Zachary all night. Full of no sleep - and just full of well, a broken broken broken heart. How do I fix this - ?? Zachary's requiring Diazepam & Ativan every 2-3 hrs. - continuous drip of dilauded and I'm the one giving it to him. I'm emotionally drained and physically drained. Do I look at yesterday as an awesome Christmas . . . I'm sure I will at some time. 2004 Christmas was the most awesome Christmas - this Christmas - I was just thrilled that I watched my son open his gifts and watched his eyes light up when he would open something that he wanted.

Thank you everyone that helped make this holiday a special one with all your giving and support. We love and appreciate everyone!

Nikki - mom to the TEEN WONDER

Thursday, December 22, 2005 5:21 PM CST

Well, Zach woke up this morning and had an excellent morning. He went Christmas shopping with his grandma and Aunt Tomi - He LOVES shopping!!!

Only 3 more days!!!!

Zach and Kylee are soo excited. Tonight we are going to watch a late night movie at the Cinima - - - Zach's snoozing right now.

We got a few Christmas surprises today - total blessings!! Thanks Jill and thanks to - well, you know who you are - we don't as to you didn't leave a name in the card.

Thanks for everyone's support - your prayers and everything are so appreciated! Also, thanks for giving to the Neuroblastoma Research - Zach's tree is getting more ornaments - thank you to everyone!!

Nikki - mom to the TEEN WONDER!

Tuesday, December 20, 2005 7:30 PM CST

ONLY 5 MORE DAYS!!!!!

There are so many things that we still need to do! Well, John & I got the majority of it done last night. He's such a good husband and helps out so much with Zach & Kylee. He's been helping me with giving Zach's IV meds. That is such a help - because the reality - I've been Zach's nurse longer than I've been able to just be his mom. With John's help - I've been able to do mostly mom things:-)

Well, Zach went to school yesterday and was one of the Three King's - - - (the most handsome one, I must add :-)!!

He looked so good up there last night - I was so proud to be in the audience watching my son say his parts. There are no words to describe it. I was in the audience proudly wearing my HOPE St. Jude Shirt!

Zach wasn't feeling too good this morning and it was the Christmas Party at school. The last day before Christmas Break. He had me give him extra meds and slept a little longer - then got ready because he wanted to give his gift to the teacher. He really likes his teacher - Mrs. Brush.

Well, thanks for everyone's support. There are a few families that have been so encouraging to us throughout this journey - the Meints Family and the Rusch Family. I just want to let you guys know how thankful we are that you are in our lives. Thanks - there are so many more -

We love you guys and appreciate Everyone!! Merry Christmas!

Love your family like there is no tomorrow!! Hug, Kiss them, let them know what a difference they've made in your lives. Let them know how Important they are!

I'm off to go grocery shopping . . . . . . . fun fun!

Nikki - mom to the Teen Wonder

Friday, December 16, 2005 10:02 AM CST

Update: Zachary's swelling is almost down to normal!!!!! The Dr. checked him out and all the congestion is the upper respiratory - so, right now the lungs sound pretty good:-)! Thanks for all your prayers! He is 5'5" now!! I can't believe it - he's almost as tall as him mom!

Everyone ready for Christmas??

We are headed over to Zachary's Pediatrician. St. Jude won't give him an x-ray - so, we are going to Morton. Zachary woke up this morning filled with fluid and he sounds very weezy. There is probably some medicine that could help him - instead of me giving him meds that are very hard on his pulmonary functions. Just keep up your awesome prayers for Zachary. HOPE

I got a shirt yesterday that is from St. Jude that says HOPE - My favorite shirt now. You will probably see me wearing this almost everyday:-)

So, 9 more days till Christmas . . . still not done Christmas shopping!!!!! So much to do - but, my #1 focus . . . my Zachary.

Thanks for all the support - love you guys!

Nikki - mom to the Teen Wonder!

Monday, December 12, 2005 10:26 AM CST

I know I've been letting Zachary down along with John & Kylee - I've been so moody and such in a bad attitude - - -

I want to change so bad - This is the Christmas season - my favorite time of the year - I think that's the reason - I want everything perfect - and expect nothing less - I want everything just right - did you here me - I WANT - not even giving it a though at what God wants - so many times - especially when things feel like they are out of control - I try to take control - instead - let God take control - if I could just learn to do that ALL the time - That could give me the peace that I've been longing for -

First, I want to start off by saying Zachary went to school this morning - yep, not even late. He went to see the Power Team last night with his friend Kris and asked them to pray for him - I could tell by the way he folded his hands - he prayed so hard - I can tell - he is believing in a Miracle - God will give him that Miracle - Join us in believing - just watch - Zach is going to have a documented miracle happen to him - He's always told me that he is going to grow up and be a Mighty Man of God - it was amazing without saying anything - the guy prayed over him and said to Zach even though the Dr's have given up - God hasn't -

So, this Christmas - I am so thankful for the gift God gave us - the birth of Jesus - Because of him - we have so much - peace - joy - love - all the fruits of the spirit - and healing & the knowing that Eternity in heaven - So many things my son has taught me . . .

How I love my Zachary

Thank you for all your prayers!!!!

Sending love . . .

Nikki - mom to the Teen Wonder & princess Kylee and Wife to the most amazing husband

Friday, December 9, 2005 11:44 AM CST

Last week at this time we were at Magic Kingdom - getting ready to leave. Zach & Kylee were picking out their favorites. . .

Wednesday Zachary had a very very GOOD day. He was back to his old self. I love those days!!! He even went to school. Every morning he wakes up - around 10:00 and gets ready for school - he usually ends up needing too much meds and sleeps the day away. How he misses his time with his friends. Right now he is having a very hard time - because he feels so alone at school. He's hardly able to go to school - so, all the friends have become closer with other friends so, when he's at school - he's usually by himself. I wish I could make everything all better. This is heartbreaking for a mother to watch. Watch my son fight to get up every day - and yet be so alone. He asked me yesterday if he looked sick - he asked me if I was a girl would I want to have him for a boyfriend. He asked me if I thought he's cute - then he said never mind - you're my mom - of course I'm cute :-)

I try and think of Zachary being here with us - that in its self is a miracle. But, it truly is heart breaking to live each day and not to regret any thing and make each moment count - this could be his last good day. I'm so very worn out - my mind - emotionally & physically

I wish I knew - is there going to be a new treatment that comes out that is going to cure Zachary - should I take him off of hospice and try another experimental treatment . . . He has so much pain - he currently is taking 120 an hour of dilaudid - 30 of diazepam every 2 - 3 hrs - 3 mg of Ativan every 3 - 4 hrs. Zofran - dilaudid boosts - his pulmonary functions is suffering very bad from the pain - but what - what now - do I just keep making him comfortable - or is God giving him more time because a new treatment is getting ready to come out and I shouldn't worry any more - because my baby will get better - am I crazy - should I still keep thinking the best - because that is how I get up and put a smile on my face - thinking I may not have my Zachary around - I start to separate myself from this world and go in a deep hole by myself - my family don't deserve to have a mom/wife like that - they deserve one that is there for them to put a smile on their faces - I don't know how much longer - 8 1/2 years of not knowing - 5 years of fighting for treatment - The drs. gave up on Zachary when he relapsed the 3rd time in 2000 - I had to start fighting then for Zachary to get treatment -

I told Zachary he makes me so proud - he is such a fighter - then he started crying - he said he gets it from me . . . He doesn't want me here missing him - that is why he fights every day to wake up and start the day with hope and a huge smile.

How I love my Zachary!

Please pray for Aaron's mom and brothers - tomorrow it will be 1 year that Aaron has been with Jesus - and I know that it is very hard on Marily and the family right now. Leave a message for them in Aaron's guestbook - Last year Zach & I went to Disney World with them - www.caringbridge.org/il/aarondhunter

Thank you - love you guys and appreciate everyone!

Nikki - mom to the Teen Wonder

Monday, December 5, 2005 10:52 AM CST

Well, this morning hasn't been the best. Zach's pain has been elevated this morning and having to just knock him out with several different meds. So, I've been snuggling with him this morning. Kylee's at school, John's at work and I'm still having to go pick Spanky up sometime today from the kennel. Zach picked out some surprises for Spanky at Walt Disney World. They have a store just for pets!!

I'm so thankful we were able to go and enjoy ourselves.

Sunday we hung out at Epcot - John's favorite - Germany

Monday we ate at Chef Mickeys for breakfast and then hung out in the room and at night headed over to Epcot for the candlelight processional at night. AWESOME!!!

Zach's favorites - Fireworks - Big Thunder Mountain (a huge no no without his brace) - but he was crying and John was able to sit next to him and have his head in his chest to protect his kneck/spine - He enjoys Chef Mickeys - he loved staying at the Contemporary! and looking for hot girls :-) he is a true teenager!!!

The Gingerbread house at the Grand Floridian was so neat!! We went to Mickey's Very Merry Christmas Party at the Magic Kingdom 2 nights - 11/29 & 12/1!! That was a blast! That's where we got most of the pictures with all the characters.

Zach had the biggest smile when we got to the Orlando Airport and seen the limo that was there to pick us up - a stretched white limo - and his other favorite - shopping! Getting Christmas gifts - how I love my Zachary!!!

Nikki - mom to the Teen Wonder!

Saturday, December 3, 2005 12:49 AM CST

Well, We are finally home!!!!

We had an amazing time - the Christmas that Walt Disney World has - WOW!!!

The kids were so amazed to come home late last night to our house all lighted up!! Zach was so emotional to think that someone wanted to do that for him! THANK YOU SO MUCH FOR EVERYONE THAT HELPED!!! You have no idea what it means to us.

We were glad to get home -

We enjoyed every single second!! Zach picked out Christmas presents and had them wrap it up and then had us open them while we were there. Zach had the biggest smile on his face as he handed out his gifts. You should see my Mickey watch he got me! PRICELESS moments were shared!

Our view from our room was amazing. We were able to watch the firwork show from our room. Zach has been experiencing alot more pain lately and needs lots of prayers. The cold is very hard on him - the warm air in Florida did him a lot of good!

Thank you everyone for all your prayers and encouragement. Times like this - it's what keeps our heads up - to know that so many cares. Knowing the our time is precious together - thank you so much.

Love you guys - I'll share more later (tons more pictures!) - I'm going to get back to unpacking.

Nikki - mom to a Teen Wonder

Tuesday, November 22, 2005 7:47 AM CST

Thank you all for the much needed prayers!!

We are getting ready to leave - we leave on Thursday for St. Louis to have Thanksgiving with John's family - then we fly out from St. Louis to Orlando and head back late Dec. 2nd. Perfect - because the flights are non-stop!

I'm not sure if we will take a lap top or not - so I can update while we are down there. Of course I've learned my lesson to bring ALL parts to the computer if I want to update. Thanks to Marilyn for giving me such a hard time last year at this time.

I'm making a list of everything to pack right now. John is off till December 5th! Yeah - I can use his help getting everything ready.

Zach slept all day yesterday and just wasn't feeling up to par. But, he did have a big day on Sunday!

Just keep those prayers coming! We love you guys and appreciate everything!

Nikki - mom to a Teen Wonder!

Friday, November 18, 2005 7:26 AM CST

Wow, after some increases in continuous meds. and boosts - Zach is back to being comfortable :-) YEAH!!!!

Back to getting surprises ready for Zach & Kylee. I just want this trip to be so amazing for Zachary - I LOVE seeing that smile on his face and I just know that he is going to be in awe of everything that will take place at Disney.

At first I didn't know you had to purchase an extra ticket for Mickey's Magical Christmas at the Magic Kingdom - but, now I do and now have tickets for November 29th!! Snowflakes and hot chocolate . . . I just can not wait! The best thing is that it is 7:00 p.m. - Midnight - that is Zach's best times believe it or not. His mornings . . . well, lets just say he's NOT a morning person :-) As all teenagers I guess :-)

The first night we have a dinner package for Epcot's Candlelight Processional - it sounds so amazing!!

I'm decorating our house for Christmas - by the weekend I should be done. We have 3 Christmas trees and 1 barbie tree in Kylee's room. I'm making sure that EVERY room is decorated. Normally - I'm all against putting up Christmas decorations before Thanksgiving. Thanksgiving is an important Holiday and it seems as though people pass it up and go right to Christmas. I wanted to make sure when we return the house is all decked out in Christmas :-) An exception this year.

Thank you all for your support with prayers and encouraging words!!! It's so encouraging to know so many care for my Teen Wonder!!

Love & appreciate you guys!

Nikki - Mom to Teen Wonder

Tuesday, November 15, 2005 2:18 PM CST

It is really uplifting to read all the messages in the guestbook. God knows that right now we need lots of encouragement and prayers. Zachary has been needing extra boosts of pain meds today - so just pray for strength, piece and pain free days ahead - Especially for the Disney trip. He's been experiencing numbness in his feet and legs - just pray for Zachary - he will enjoy this trip!

We are so excited for the trip - We have tickets for Mickey's Magical Christmas - and we just can not wait. Also, some special tickets for Epcot's Candlelight Processional & Dinner - One thing for sure - this will put us in the Christmas Mood!!!

We just thank God for making all these memories possible. It is God that made a way for all of us to go and do this in style!

Thank you for all the support and prayers!!!!! We love you guys!

Nikki - Teen Wonder's Mom

Monday, November 14, 2005 1:58 PM CST

Well, we are going to do what the Dr. said to do - We need to get away - relax - enjoy each other -

WE ARE HEADING TO DISNEY WORLD!!!!!!

ZACH HAS ALWAYS WANTED TO STAY AT THE CONTEMPORARY - AND GUESS WHAT . . . . .

WE HAVE A TOWER ROOM WITH THE VIEW OF MAGIC KINGDOM.

Zach is excited and I have to admit - I'm very excited!!

We are leaving November 26th. So, many surprises in store for my Zachary & Kylee. I'm just so excited. FANTASYLAND HERE WE COME!!!!!!!!!!!!!!!!!!!

Saturday, November 12, 2005 10:57 AM CST

Zach's pain is so much easier to manage right now! Zachary did go to school on Thursday and amazed everyone - especially me.

The last couple of days we've been hanging out with Marilyn and her boys - we even watched a movie last night Zenthura (it was good) and went out to eat. Zach even ate a little.

All in all - Zach has had a good couple of days - - - which always puts a smile on my face.

Thanks for everyone's prayers!! Just keep them coming for strength and peace.

Love you guys!

Nikki - mom to Teen Wonder

Wednesday, November 9, 2005 7:51 AM CST

Zach is still needing lots of pain meds - but - the breathing is better! Thank you God. Last night he quit coughing blood - so it's much better this morning.

I'm getting ready to give him his boosts of all his meds and lay down with him. He's telling me that he's thinking that he will probably go to school this afternoon. He said that he has to be in high school next year with Kris. He doesn't want to miss any more school.

How does he do it????? God

God gives him his strength - he knows Zach's desires and is giving him his desires.

Nikki - Teen Wonders Mom

Tuesday, November 8, 2005 8:13 AM CST

Lets just say Zach needs everyone's prayers!

This morning has turned into a very bad morning. His breathing and everything is very labored. He came out of this once - it can happen again. Just send up your prayers - God will hear our crys and take care of everything.

Thank you for all your support!! We love you guys!

Nikki - Teen Wonders mom

Thursday, November 3, 2005 9:05 AM CST

Last night & this morning Zach has been having pain issues again. We just need everyone to pray - that all this just settles down and Zach doesn't have pain issues.

Zach asked me last night - Do you know what my name means? Yeh - that's why I named you that. REMEMBERANCE OF GOD - How fitting! He had to go to school this morning - they went to the High School - He closed my door to the van - he said remember Remembrance of God - with a big smile. God really works right through Zachary - blessing everyone that comes in contact with him. I bet he doesn't even know the difference he makes.

How I love my Zachary!

Teen Wonder's Mom - Nikki

Tuesday, November 1, 2005 10:28 AM CST

Zach won't let me keep this picture of him on the site for too long - actually he doesn't know it's on there yet. . .

But doesn't he look so cute?? It puts a smile on my face everytime I look at it. Can you read his mind . . . it's saying get this thing off of me right now!!! We had a very fun Halloween!! That's all that matters right?????

So, Zach's pain has been managed pretty easy - he wasn't feeling too good yesterday - but, he still had fun. He didn't want to miss his party. Plus he looked forward to handing out candy to the kids. He got some scary CD's and had his carved pumpkin out and was ready - but, we got home too late and had no trick-or-treaters :-(. It was so cute Zach was sitting up waiting with the candy bowl full of candy - while he picked out the blue-rasberry sour starbursts and was getting a sugar high. As long as he's eating something. I'm sure that's all you'd find in his stomach - blue stains :-)

Thanks for everyone's prayers!! Love you guys!

Nikki

Friday, October 28, 2005 6:51 PM CDT

Today was a good day. Zach woke up about 10:00 and wanted to get his halloween costume on for St. Jude's party. We headed over there and Zach really enjoyed hanging out with the Dr.s, Nurses, Shelly and Valerie. Everyone started laughing when he entered the office. I'll post some pictures of it later on. He looked so cute :-)

All I know is I really enjoyed being able to drive over to St. Jude with my son in the passengers side ready to party. Zach asked to be checked in - and when the Dr. came over to Zach he said I didn't come here to be examined :-) Zach - always gets his way. Dr. Saving said that is just fine and just wanted to know about his pain issues. So we were listening to a new Disney CD we just picked up on our way over to Peoria - it has all the music they play for each ride - wow, talk about replaying all the awesome memories. Zach said - I'll have to burn Marilyn a CD - one of the songs is from Star Tours - I remember how Aaron said - I'm not going on that again :-)

So, lots of fun things planned for this weekend - the way everything has been going - Zach's been having pretty good days - he has his moments - but, all in all - the pain is easily managed with boosts and his continuous drip. He hasn't gotten sick since last Friday - if my memory is working . . . How amazing is that!!!! Puts a smile on my face!

Thanks for checking on us!! We love you guys and appreciate all your prayers and support!!

Teen Wonder's mom - Nikki

Tuesday, October 25, 2005 9:38 PM CDT

It's a miracle that Zachary is here - that is a miracle all by itself. I was reading a friends journal and learned that she joined her Heavenly Father yesterday. Tori - she was treated at the Peoria office with Zachary and got to know her mom. We actually met up with them in Chicago when we were there in July. She was also taking the LG's. How my heart hurts. But, I also know that she is in a place of perfection - a place where there is no pain. (www.caringbridge.org/visit/toriwheat) - let them know you are praying for them.

It was a real waker upper - because I hurt for Zachary - I just want him to be pain free - but, I would rather have him here with me on this earth. So, the fact that Zachary has come so close so many times to seeing his Heavenly Father - he is still here on this earth. So, with that said - how awesome that Zachary is - I still have my Zachary - to hold and kiss and wake up to and be smiling from his sense of humor - God has blessed me time and time again with the most amazing son -

Thank you God for my special son. I hurt so bad for the Wheat family and all the other families we have met along the way that is waiting to see their child again in heaven. I am still praying and believing for Zach's earthly healing - because I don't know if I could really wake up one day without my Zachary - he makes my world - without him - I'm not sure where, what I would be or doing.

Continue to pray for a cure for Neuroblastoma - no other family should have to go through this.

Thursday, October 20, 2005 8:28 AM CDT

I can't believe how October is almost over. I remember exactly what was going on last year at this time. Zach and I were in Memphis - having tests done after getting out of the hospital after a month of being in patient. We were wanting to go to Disney - and just a few weeks later we went - with Marilyn & Aaron. A time that none of us will forget. There are many times that I grab the pictures and my books of Disney World and sit in a room just playing all those awesome memories back in my head. Aaron with his cute voice reminding me - we going swimming when we get back to the room . . . yeah - - - cuddled in Marilyn's arms in the hot tub because the water was too cold in the pool :-) Zach pooring water in my side of the bed and I poored water in his side to get back - what did that solve??? We both slept in a wet bed :-) Zach needing more money to shop with - what a shopper!!! He LOVES to shop! Calling the front desk for a new coffee maker (at midnight) to make hot water for hot chocolate - green hot chocolate (Buzz Lightyear)! Anything the boys wanted - ANYTHING!!

Well, It's is so hard to understand the different emotions - just everything that Zach deals with. The hardest thing for him - Zach doesn't give up. Zach never wants anyone to feel sorry for him and if he could help doesn't want anyone to know that he's sidk. I don't tell other people either - he wants to be NORMAL - and be able to do what his friend Kris does. That is the HARDEST thing for me to watch - he tries SOOOOOO hard to get up everyday and go to school and maybe he'll end up being able to go for a couple hours for one day - which means his friendship with Kris isn't what Zachary wants. Kris is the one friend he's been able to keep - because of everything that he's had to go through in the last 8 plus years - he's unable to have close friends because of missing so much school and unable to participate in things with all the other kids. I can see the struggle he has everyday - - - he wants so bad to just hang out and let Kris know how important he is to him. Thanks Kris for being there for Zach - you have been his best medicine through all of this - he keeps going because he doesn't want to let you down and me (of course his mom) :-)

You see - If you would walk up to Zach and ask him how's he doing - he says great! He has a smile on his face at all times - he's trying to get the people around him to smile and have fun. He constantly does things for me - he doesn't want me to not be able to do something because of taking care of him. It's a struggle for him to just lay down and let your mom take care of him. You wouldn't know he's sick - because he struggles to use his wheelchair. It's harder for him now to use anything like that when he really needs it - than any other time. He never says he can't do anything - he will just make a suggestion to do something that he knows he can do. Watching movies is one of his favorites now.

He's maxed out all of his meds and the hospice nurse & Dr. said that if he has another night like he did - then he will have to go back into the hospital to get a new set. Right now he's doing ok - the last couple of days he's done alot of sleeping - which right now is an answer to my prayers. For him to be comfortable. How my prayers have changed through this fight. . . .

I just want to thank everyone for all your support and prayers!! WE love you guys and appreciate everything!

Teen Wonder's mom - Nikki

Thursday, October 13, 2005 8:20 AM CDT

It's such a blessing to wake up with Zachary's arm around me and telling me thanks for keeping him warm all night long. He has the most amazing smile and to look in his eyes - I just thank God for each of these moments.

Zachary got up yesterday - and said I'm going to school (it was noon time that he woke up). He got ready and he quickly laid down and asked for more meds - he wasn't feeling too great. Then a few hours passed and school was already over. He wanted to go so bad yesterday. By 4:30 he was feeling the best he's felt in a long time - he was ready to head over to Confirmation Class. He ended up staying for the Pizza Party and helped make teddy bears for patients in the hospital. He enjoyed himself for 3 hrs.!!! He hung out with his friends - - - something that he has been longing to do and he enjoyed every second. Of course, when he got home he needed extra boosts of everything - but he felt great for the entire time he hung out - something that will put a smile on my face for a very long time - I could just see the happiness in his eyes when he was telling all about it. Kris is Zachary's best medicine - - - everytime Zach has time with Kris - he ends up doing so much better!!!

Thanks for everyone's prayers and support!!! It's so encouraging to have read the guestbook entries and know that so many are praying for my Zachary!!

Nikki

Saturday, October 8, 2005 9:07 AM CDT

Sorry for the delay in updates. The last 2 days have been really good for Zachary. The pain level has been alot easier to manage!! Praise God! After the changes in dosing and everything -

I have been giving all my time to Zach & the family and haven't spent any time updating or on the computer. I just have been so consumed lately - I was just needing a break from everything.

I know that God is getting me through each day - and giving me the ability to look for all the good in times like this. I'm very thankful for my husband John and Kylee and my Zachary - it's nice setting the table for 4 of us - even though Zachary doesn't eat - it's nice having the whole family together - one day soon I know God is going to make my baby all better - here or in heaven - I just know that is his promise and I have this amazing peace - that passes all understanding!! Thanks for all your prayers - they are really working!!

Love you guys and thanks for all the support!

Teen Wonder's mom - Nikki

Friday, September 30, 2005 7:09 AM CDT

NEW PHOTOS in VIEW PHOTOS

Couldn't sleep . . . as I hold my son and watch him sleep so many things go through my mind. It's like I have my own theater and I watch different memories that we've made and think - how awesome is my Zachary and what a blessing he is. God knows how I cherish him - and yet the last couple of days I realize how more than anything I just want to know that he doesn't have to be in pain any more. Everything that my son has taught me - unbelievable - It is so much that he's taught me - I'm at a loss for words when I just stop and think how much he has and continues to teach me. An extremely important role my Zachary has in my life - God is so good . . . when I think of how he sent Zachary just for me - I don't deserve such an awesome gift - but, he picked me to take care of him and bring him up - I feel that Zachary has taught me more than I have taught him -

As a mom you just try and make your child comfortable and peaceful - for me it means turning up the oxygen - drawing up meds at all hours of the night - praying all the time - Your will be done God - Zachary is such a blessing in it all -

The last couple of days have been harder and is so draining -

A TRUE TEEN WONDER . . . My Zachary!!

Nikki

Tuesday, September 27, 2005 7:32 AM CDT

Kylee just went out to wait for her school bus. As I sit here - I wonder how do I want to update on my Zachary - - - because I'm always at a loss for words - or I guess things I really don't like typing, our reality is so different - the odd thing is - I still have good things to share-

Zach always has a smile on his face and gives lots of hugs & kisses and tells me I LOVE YOU MOM - those words I just keep playing in my head as I snuggle with him at night. He needs his oxygen again - he's wheezing - - -

AND - he goes to school for a couple of hours a couple times a week - this image will forever be my memory - I dropped him off at school - he gets out of the van by himself - after having his continuous drip increased, extra diazepam & ativan - carried his book bag with no help up some steps, stood at the entrance of the school and blew me kisses, waved with a HUGE smile, and moved his lips saying I LOVE YOU - An image that will be forever stuck in my memory -

His Grandma Schoenfeldt got Zachary to be able to go to Confirmation class with all his friends from school. He is looking forward to that. He had a huge smile on his face and said mom - I get to go with my best bud Kris. Zachary thinks the world of Kris. He has become like part of the family.

How I love my Zachary!

Teen Wonder's mom - Nikki

Tuesday, September 20, 2005 10:30 AM CDT

Why . . . . .

I don't have an answer to that question - How much longer is Zach going to have to live this kind of a life before his miracle happens - I can not begin to explain the pain, the torture, the stress, the draining both physically & emotionally this situation is . . . . . Zachary is so amazingly strong to put up the fight he is putting up - every day - I try so hard to put on this strong face and pretend that this is a fresh new start each day - this is going to be the day . . . . . .this will be the miracle making day ------------------

Zach will push himself to go do something . . . like school for a couple hrs. then he comes home gets sick and is in so much pain from pushing himself over the limit - and we are right back trying to control the pain and dehydration - I ask him - why are you pushing yourself over the top like that - His reply . . . . if I don't what will I have to live for - I won't be hanging with my friends, I will be in my room lying there - what kind of life is that - - - I cry out God - why is Zach enduring all of this - when - when will you do your miracle that Zachary is believing in - it's breaking my heart - I don't think I can take much more - I am hurting so much - to watch my son's body change - to watch him endure the pain - when will I see him pain free - that's all - pain free - and free from carrying around IV's - free to play his most loved game . . . Basketball -

I would love to ask him where do you want to go now with your friend Kris - Zach doesn't even have the freedom of going somewhere and enjoying it right now -

Sure, people tell me he looks good - you have no idea what it takes for those few hrs. for Zachary to pretend that he is fine - because once he's home - and where no one can see him - he has a melt down - sick - pain - I wish it were back to the way it was - My heart ACHES -

Saturday, September 17, 2005 11:26 AM CDT

Well, by Thursday - Zach's pain has been more easily managed. We've upped the dose of continuous pain meds. and it seems that it is at a good rate for Zachary - because Friday - Zachary attended school and was more like himself.

So, what do we have planned for today . . . well, Morton is having their Pumpkin Festival and Zach is wanting me to pack his chair and head over to Morton.

I just want you all to know that your prayers are working and we are very gratful for all your prayers!!

Thank you so much - this is a very difficult time - and only God is getting us through. John left for Texas for work - and will hopefully be back Monday - pray for his safe return - he is deeply missed!!

Appreciate everything!

Zach's mom . . . Nikki

Wednesday, September 14, 2005 8:10 AM CDT

Zachary is very peaceful and sleeping right now. Zachary amazes me everyday! What a special gift God gave me. I have truly learned the lesson of never taking the beautiful children God has given me for granted. But, to enjoy every single moment with them. I feel guilty sometimes - to the fact that my daughter Kylee has not gotten the same attention that Zachary has all this time - how do I let her know that she is just as special to me as Zachary. A constant struggle. I remember her 3rd birthday - I had to have the party in Zach's hospital room - Zach was inpatient - Cancer changes everything . . .

Thank you so much for keeping our family in your prayers.

I have a constant heartache - a knot in my stomach - a sick feeling - what am I suppose to be doing - I feel like I'm not doing something right . . . I'm so drained emotionally - physically - I have been my son's nurse for over 8 years - when do I get to be just a mom - I get sick of having to draw up meds - I'm sick of looking at medical equipment in my son's room - I just want to walk in to my son's room and be able to ask him what do you want to do today - and let him have the freedom to pick what ever - he went out in the garage last night and sat in his go cart - was crying - I want to just ride - my heart aches -

Zach's mom - Nikki

Saturday, September 10, 2005 4:46 PM CDT

I believe this has been the hardest day yet - It didn't start out that way. If only time could stand still . . . . . .

If only time could stand still - -

If only everything could get all better right this second - - -

If only I could give my son the healthy normal body almost all the other children have his age - - - I say almost because there are children that are fighting for the same thing Zachary longs for - some kind of normal life.

I feel like I can't do anything right - Zachary keeps getting sick and is in constant pain right now. We've increased his dilauded continuous drip of 60 mg an hr. plus every 4 hrs. diazepam plus every 4 hrs. ativan plus zofran - and boosts of other pain meds. and still - zachary is hurting - please pray that all this will go away - I can't stand for one more second to watch him in pain - this has got to be the most pain that I've had to go through up till now - Can you believe that Zachary walked around at the Marigold Festival??? Of course that's probably what did him in today - he came home throwing up and in really bad pain. Dr. McCallister - stated he is very strong - Oh, how proud I am of my Zachary!

Thursday, September 8, 2005 8:15 AM CDT

Zachary is yelling my name . . . .

He's so bull headed - I wonder where he gets it!??:-) He's carrying around his IV hydration & IV pain meds - ready for school. I talked with the nurses from St. Jude yesterday - they couldn't believe it - Zach's on 45 dilauded an hour - IV diazepam - IV lorazepam - IV zofran - IV hydration - still is going to school - for about 2 hrs. - amazing. Last night he was crying because his back pain was so intense - I gave him several boosts and he finally calmed down - and went to sleep for the night. He just stated that his back feels much better this morning - he's ready for school.

I can't get over the determination of my son. He amazes me every day. Yesterday he hopped in the van for me to take him to school - then he started getting sick again. We headed back home for a couple hours and he had me promise him that I would wake him up in 2 hrs. to take him back to school. He went - for 2 hrs. yesterday - and I'm really wanting him to rest today - but . . . . . . guess who will probably win this ----------- you guessed it - ZACHARY:-)!

I love my Zachary! and of course my daughter and hubby :-) I have fresh flowers all the time - John is always doing things to put a smile on my face. When John left for work yesterday - Zach said - it's ok mom - I'm here - I can protect you now :-)

Keep those prayers coming!! Love you guys and appreciate everything!

Nikki - Zach's mom

Monday, September 5, 2005 12:07 AM CDT

NEW PICTURES IN THE VIEW PHOTOS!

Wow - - - it's been awhile between updates - so much has changed!!

The wedding was amazing!! Everyone tells me that it was beautiful. John looked soo good in his white tux - and Zach looked so amazing in his. It was the most amazing feeling having my dad on one side of me - my son on the other - and John standing down the aisle.

Zach - he's sleeping right now. It's so nice to see him sleeping and so peaceful right now. He is such a fighter. I know that is something I say - but I just can't stress enough what kind of fighter he is! He went to school a few times this past week and he is the Vice President on the Student Council. He's the big man on campus this year - - - 8th Graders Rule!

This weekend has been really rough for Zachary. His continuous drip has doubled over the weekend and he's not eating - well, very very little. The Dr. said that they are going to have to start different pain meds in with his continuous drip - such a strong strong will to live and right now it's hurting me - seeing him in pain - all his joints - jaws - neck - back - everywhere is hurting - and it seems that pain meds. just aren't doing the trick. We have noticed that a big push of pain meds & a push of ativan at the same time seems to settle everything down - takes the edge off. So, Zachary is really needing your prayers!

I appreciate everyone's support and most of all your prayers! It's an awesome feeling to have so many that care!!

Love you guys!

Zach's mom - Nikki

Thursday, August 25, 2005 6:46 PM CDT

Only 2 more days now . . . I am so happy and excited and nervous - so many emotions going on! So many things to do!

And tonight I'm into the updating thing . . . . . .

Zach got up and headed over to school!! Can you believe it. He's on the continuous dilauded drip - at a high dose - and he's so determined to go to school and be normal!! He's even on IV ativan every 4 hrs. & IV zofran every 8 hrs. - yet he stays awake to do what other kids take for granted. A normal child would wake up with a cold and say - hey, I don't feel good today - I'm staying home. My son - he's got IV meds pumping through him along with other meds that make him so drousy and yet - he lets NOTHING keep him home - DETERMINATION! I can't believe how strong Zachary is!!! I am so proud of my son and daughter. Everything they have both gone through and they are terrific children! They make me so proud to say - I'm their mom! Kylee's playing volleyball and continues to play her cello! She is really liking school this year!

So, in just a few days we will be gaining a husband and father. I can't remember if I've told this story . . . I remember how in October 2003 the kids and I put together a list of everything we wanted in a husband/dad - we prayed over it every night - Zach started to become John's friend at church - then when Zach relapsed in March 2004 - John came up to the hospital and was with us every night since. When Zach came home after his laminectomy - he said hey mom lets look at our list and see if John is everything on our list - he was - in amazement Zach said MOM he's everything on our list - he's not a good driver and we didn't have that on our list!! Tears were coming down - tears of joy knowing that on my way to the hospital that time - I cryed out to God - God, I can't do this on my own this time - That night John was there and every night after that. So, God does answer prayers!! One of the first things on our list - must love the kids first - then fall in love with me - that he did - he fell in love with Zach - Kylee - He has the biggest heart!

Thanks for everyone's prayers!!! We value each and every one of you - for all your encouragement & support!

One happy mom,

Nikki

Tuesday, August 23, 2005 10:06 PM CDT

My heart just isn't in to the updating thing tonight. My favorite kind of news is great news. Whenever it comes to the not so good news - I'm just not that excited. Yesterday and today have been different from the prior - what. . . 5 days in a row awesome days. Zach just hasn't felt like himself. He's been sleeping and just needing extra boosts of meds and other things that has been happening that's got me concerned. I just want him to be able to walk me down that aisle. I'm soo looking forward to that!! Although tonight he's acted more like himself. He's really been babying his neck the last 2 nights. Of course, Zach being Zach - just won't let me in on what is going on and why he is so distant with everyone. He's been hugging me and kissing me alot more the last 2 days - which always puts a smile on my face.

Thanks everyone for all your prayers. Just keep them coming! Only 4 more days before the wedding!!

Zach's mom - Nikki

Saturday, August 20, 2005 4:04 PM CDT

Wow, one week from today I will be married. That seems so weird! And it is so exciting!! I'm excited that Zach and my dad will be walking me down the aisle!! You know there will be a picture of that on Zach's website! I know I will be wearing the biggest smile - so proud of my beautiful son! Crying happy tears!

So, this will be day #4 IN A ROW that Zachary has not needed pain med boosts!! How awesome is that! They increased his continuous meds on Tues. evening and has not needed any boosts or increases since! AND . . . he's been eating and keeping it down and has not needed his oxygen at night! WOW - those are awesome praise reports to be able to give that to you - The only IV meds he has boosts of is Ativan & Zofran. He is even awake alot more. So, what do you think is happening??? I know God is the one taking care of my Zachary! We've even stayed away from St. Jude! We didn't go this week after all. Zach just wants to stay away :-)

It's very busy here. Getting ready for the wedding. I have a few prayer requests & would like for everyone to send encouragement & prayers to a couple families that are going through so tough times ----
www.caringbridge.org/visit/toriwheat/ - she has neuroblastoma and goes to the midwest affiliate for some of her treatment. We are seding prayers your way Tori!!

www.caringbridge.org/mn/atford - he's a cousin of ours and relapsed after his bmt. We are sending prayers your way Anthony!!

www.caringbridge.org/il/aarondhunter - Marilyn is really missing Aaron right now - she needs encouragement -

This family has recently got some good news and I thought it would be neat to let them know how excited everyone is for them and what an amazing kid Jacob is - Jacob loves to read his messages in his guestbook! :-) We stayed across the hallway from them at the RMH! www.caringbridge.org/va/jacob_bollinger
We love you guys.

Thanks for everyone's support - we are so blessed to have so many that cares!!

HOPE,

Zach's mom - Nikki

Monday, August 15, 2005 10:01 AM CDT

Wow only 12 more days before the Wedding. I can't believe how much I have left to do!! We've decided to reschedule the reception for November 19th - with Zach needing 24 hr. care from me - less stressful to just be able to focus on the wedding.

Sorry for such a delay in updates. My last update was a positive one and it helped me focus thinking like that - it's not easy to be positive 100 percent of the time. I have to admit - I have moments when I get scared - I start to think the what if's and just start crying - It's a constant heart ache that I just want everything to go back the way they were before all this relapse stuff. After the 1 yr. in remission - I had to let go of the what if's and just focus on the fact that Zach is in remission and this family is going to have a normal life.

Zach's on his continuous drip of pain meds., ativan & zofran. The pain issue is there - nothing like it was the beginning of July. How awesome is it that Zach is still here!!! I just focus on how blessed I am that Zach is here and take advantage of these moments! He continues to love being around people (most of the time) and loves riding his go-cart. I have noticed every time he gets off his go-cart - he needs alot more pain meds. It vibrates your back while riding it - so I'm sure that it irritates his spine. But, if that is what Zach is wanting to do - so be it. Anything that puts a smile on his face.

School is about to start - Kylee is just so excited to start the 4th grade! Zach got up one day and decided he needed his school supplies - so, we headed over to Staples and the kids picked out what they wanted. Zach - well, he picked out all the expensive pens/pencils/highlighters - I picked up the one set of highlighters - no mom - those look girly - ok, did not know that highlighters could look girly - so, Zach picked out everything! And - he did not want the wheelchair - he walked using his own cart!!!! How strong is that???!!! I'm telling you - Zach is soooo amazing!! For the first time in a very long time Zach drinks and eats a little and it stays down!!!!!! Praise God!! This has been a major issue!! Before, Zach wouldn't even think about drinking or eating because it would come right up - well, not now!! It may be just small amounts - it's making him a lot stronger!

We are so blessed to have such a supportive group of people that care about us so much. We love you guys and appreciate you all so much! Everything is appreciated!!

Thank you so much!!

Zach's mom - Nikki

Tuesday, August 9, 2005 1:52 PM CDT

Update: Aug. 10th
Just something I thought you would like to know - Zach's hospice nurse was just here - She can't get over how strong Zach is! She let me know that Pekin is not her area - but, because the report from the Dr. that Zach's life here is very limited - they went ahead and assigned her to Zach who lives in Pekin - here it is 3 wks. later and Zach is still plugging away - and Zach hates having new faces here - so, that nurse has the joy of being Zach's nurse for longer than what anyone had intended :-) She is really a nice nurse.

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

Sunday was the day to rest! Zach woke up around 3:00 p.m. and just laid around for the rest of the day. He didn't need any boosts of pain meds!!!!! Amazing - God is always there in the middle of the storm. He made sure Zach was comfortable.

Yesterday when the nurses stopped in to check out Zach - he told them that he wanted his pain meds decreased. He is so sick of being connected to the IV - he is wanting to get rid of it. Last week what would of went through my mind is - how is Zachary thinking that he's going to get better and get rid of his pain med IV - does he know that what he is taking is not taking the cancer away - only the pain away. Does Zach realize that he is so close to death - his life is very fragile - Lets say God will take away Zach's cancer- Zachary's laminectomy has totally deteriated - his neck & thoracic spine is very unstable - the only reason he is not wearing his brace is because it causes him more pain -

Zach's faith -is faith he has through Christ - Zach believes that he is going to be a mighty man of God - when he was 8 years old is when he said he talked to God and God would talk back - For it was after he relapsed for the 3rd time with stage 4 Neuroblastoma - he was at home on high doses of pain meds - with a tumor around his wind pipe cutting off his oxygen - when he woke up one morning and said that God told him he didn't need his pain killers - 1 month later - the MRI I demanded (they weren't doing any more scans because he was getting ready to go on hospice) showed NED - Zach was in remission (Sept. '00). This time is so much harder - just 1 month ago - when Zach was in the hospital - he was so close to death - he was coughing up blood and his oxygen saturation levels were in the 50s and 60s - sleeping all the time - now - he his oxygen saturation levels are in the high 80s - sure - Zach has pain issues - but, God can heal - especially when it seems impossible - for it is at that time - God will come in and perform the impossible - what the world believes that there is nothing to prevent Zach from dying - for the Dr.s and nurses are telling us to make arrangements - Zach is believing he's healed. It's a child like faith that God uses - to perform the impossible - The world would call us crazy - Zach is believing he has his miracle - even though your eyes are saying one thing - - God is telling Zach - he is healed - Totally a God thang!

So, are we crazy?? No - God is supernatural - in the natural it does seem crazy and not possible - With God -- ALL things are possible!

What has my Zachary taught me??? He is a mighty man of God and it's only the beginning of how God is using his life! The enemy is trying so hard to destroy his life - Zachary is determined that he is not giving in - Zachary has a Will to LIVE!

Thanks for everyone's support with prayers and encouraging words!!!! We appreciate everyone!!

Zach's mom - Nikki

Sunday, August 7, 2005 10:18 AM CDT

***NEW PICTURES IN VIEW PHOTOS***
Image hosted by Photobucket.com
Hey Marilyn - YA LIKE?! :-)

You should have seen Zach yesterday - there was nothing that could of stopped Zach from participating in the St. Jude Run Yesterday!! He loved EVERY minute of it!! Thanks Creech Family!

Friday night was a hard night trying to keep Zach comfortable - as you can see - Zach still rode his go-cart! We were just up all night trying to get the pump at a good rate for my Zachary. A few hours of sleep and up he was - getting ready for the run. ZACHARY HAS A WILL TO LIVE - nothing - will take that away. Every day is like the fight just begun and he's ready to take it on - Ready to win - ready and patiently waiting for his miracle. With courage that very few have . . . How proud I am to say - that's my son - That's my Zach.

At the end of the night he looked so tired - in fact he kept falling asleep as you talked to him - but as soon as you would tell him your tired - you need to get some sleep - Nu HUH - no i'm not tired - and bites your head off - He seen his Dr. at the telethon last night - how are ya doing buddy - I'm great - If you know Zach - Zach will always tell you he's great - He finally peed for the 1st time for almost 2 days- he said see mom - i'm fine - the Dr. said as long as I pee 1 a day - I'm fine - He even ate a couple bites of his dinner last night - He does anything to make his mom smile :-)

Yesterday was so fun and a very neat experience to participate in the St. Jude Run. I am so proud of all the runners and what they do to raise money for St. Jude. It truly is a blessing. Raising money to save childrens lives!! That is what it's all about!! GIVING KIDS LIFE!

Thanks Terry Cooper & Craig Meints! Running for the kids!!

Zach's mom - Nikki

Friday, August 5, 2005 11:54 AM CDT

So many things a racin in my mind. Wedding - Zachary - So many things - hard to be organized - I remember nothing. I just noticed I spelled magic - majic - that's just the beginning of the dumb things I do.

Tomorrow is the St. Jude telethon - here in Peoria. The St. Jude Runners are coming in tomorrow - We really enjoy our time cheering for the runners and just hanging out with so many that care and wants to find a cure. That is what it's about - finding cures - making kids better so parents can watch them grow up and see them accomplishing everything they've always wanted. Watching their kids have a normal childhood - Raising money for St. Jude - means more money for research - Saving Childrens lives -

Today Zach & I are going to hang out with Marilyn and her 2 oldest boys.

Yesterday was a good day for Zachary - he slept all day - but later on he wanted to see a movie. Zach's been sleeping about 80 percent of the day and just not wanting to move around alot - Moms know - I can tell something just has been different the last few days - he told me that he doesn't like telling me everything because he doesn't like it when I freak out - ME . . . Freak out??? Ok, I admit - I kinda get emotional whenever I see Zach hurting and getting sick - I am just tired of seeing my Zachary this way - enough already - Ok, so I realize that Zachary seeing me this way isn't good - I explain to him - I just want him to be all better. He is so strong and such a fighter. He is so courageous!!! MY HERO!! MY Zachary! He is still trying to protect me - How I love my Zachary! It is amazing to see how God is blessing us in the middle of the storm.

Thanks for checking in on us!! We appreciate all the support of prayers and encouraging words and e-mails! I don't take it for granted - I really do appreciate everyone!

Thanks!

Zach's mom - Nikki

Wednesday, August 3, 2005 9:39 AM CDT

We are so blessed to have so many that cares for us and wants to support us in any way. It means so much to us - especially these days. Just being there for us - just talking - It's hard for anyone to know what to say - just being here - visiting - encouraging e-mail - just your company letting us know you care. Thanks!

So, Zach is an Official Teenager now . . . On his birthday Cassie came and picked Zach up for his "1st Date" - I loved every minute of - seeing the smile on Zach's face - I could tell Zach was LOVING every minute of it. I have a picture of Zach & Cassie in her Red Car - Very Nice - Thanks Cassie! (In View Photos)

Last couple of days have been different. We met up with Terry Cooper yesterday morning to send them off - heading to Memphis for the Memphis to Peoria Run - I was told that we were on the News - WMBD - channel 31 - Pray that they will have cool air to run in and for God's protection. We are going to meet up with them on Saturday - when they are coming in from Memphis.

After sending the runners off - we headed over to St. Jude - Zach needed hydration - and he is very very stubborn about having IV hydration at home -

The heartache that I have - I want to be able to give him a majic drug and make him all better here - I want to be able to see him graduate and get his drivers license - Any moment I'm ready to be able to tell everyone that it is true - he did have his miracle here on this earth - I want my baby to have what he's longed for - 9 years of longing for a normal life - A NORMAL Life - A life so many take for granted - The heartache is VERY real - For Zachary - the fact that he was able to walk around at his birthday party - He had to use all the strength that he had stored up to do that - he didn't want anyone to see him in a wheelchair - he had me park it in a corner - he slept the whole next day - Zachary longs to be normal - for just a glimpse - If I could take what he has and give him my normal life - I wouldn't even have to think about it - for my heartache would be better - because my son would have that normal life he's been fighting to get back for 9 years. How I love my Zachary!

Thanks for everyone's prayers and encouraging words!

Zach's mom - Nikki

Monday, August 1, 2005 8:18 AM CDT

HAPPY BIRTHDAY TO YOU - HAPPY BIRTHDAY TO YOU - HAPPY BIRTHDAY DEAR ZACHARY - HAPPY BIRTHDAY TO YOU!!!!!
OFFICIAL TEENAGER!!! 13 yrs. old! 13 years ago was the beginning of a love - I didn't know that you could love someone that much - The most precious - cutest - I just held him and watched him sleep - ALL THE TIME - My first born - My son Zachary - very spoiled Zachary :-)

Zachary had a really good day on Saturday - He was able to really enjoy his party! They were going to block off the bottom seats for him at the movie theater for the whole party - he said no - I want to be at the top - the top 3 rows - He got up and walked up those stairs - he enjoyed who he sat by - he was so tickled about it - he just kept smiling and didn't fall asleep - Thanks so much Cassie!! The party was great - the movie went right along with the theme - Sky High - He had tons of balloons - the theme was superheros - so all the balloons were superheros - pictures of children that are superheros - one of Aaron with the Incredibles - one of Spidy Super Jake - one of Chad - those went right along with the theme!! SUPERHEROS! His party wouldn't have been awesome without all the people that came - thank you so much - it made his day!

Saturday was a really really good day. Yesterday he was recovering from Saturday - sleeping - laying around - more meds - but overall - he was comfortable. His strength just amazes me! I still can't get over it! He is a superhero - with super power - God's super power!

Thank you everyone for all the support - We appreciate everything - all the prayers and encouraging words!! Thank you!

This coming up Saturday is the Local St. Jude Telethon! Kim Creech told me at Zach's Birthday Party that this years Pekin to Peoria run is in Honor of Zachary - that means sooo much!! Kim started it in memory of her son Chad Creech who lost his fight in July '99 - actually won his fight - because now he is in remission forever and healed forever - So it really means alot that this year she wants to honor Zachary - Chad's her son - Thanks Kim & Jackie & Cassie! Also, thanks to Marilyn & the boys for being there! I miss hanging out with Marilyn and Aaron - just being able to hang out with Marilyn and talking about our fun with our boys - Thanks!

I'll update later with pictures from the party - I left it at the restaraunt that we ate at - they found it :-) and I am going to pick it up today!

Zach's mom - Nikki

Friday, July 29, 2005 9:12 PM CDT

NEW PHOTOS IN VIEW PHOTOS!

I typed and typed and tried updating last night - it didn't go through - so I wasted alot of time trying to update . . .

I'm just not that excited to update any more - I don't know - I get asked how is Zachary doing - how are you doing - How do I answer such a loaded question - because I'm sure that no one really wants to know the REAL answer - I hate giving that kind of an update. The last few days have been hard.

We went to Chicago Wed. - Zach just had to go. We did have a nice time overall - it was Zach's pain and getting sick and needing such a boost of all his drugs - that was painful - the the fact that my Zachary was by my side - along with my daughter and his best bud Kris - made me smile - We had the pleasure of meeting Matt Widman (dad to Super Jake) & the Wheat Family. I was living in the moment. After the Museum - Zach wanted to surprise the girls (sister Kylee & cousin Ali) with buying them an American Girl Doll - so we rode some taxis over to the AG store - The girls had no idea and boy were they full of joy! Then Zach was headed over to Chicago Comics - he got his missing piece of the Galactus - YEAH!! It was the biggest comic store - Zach & Kris loved it!! Then we headed over to Rainforest Cafe - by this time Zachary was so worn out and feeling really bad. He stated that he wanted to stay there and eat - he wanted his friend Kris to enjoy his time - how he loves his friend Kris. Zach slept the whole time at Rainforest - but not until he spotted a gorilla - the ones that his friend Aaron loves (we went with Aaron & his mom to Disney World in November '04) - Aaron went to heaven December 10 '04. He pointed and said hey there's that Gorilla Aaron likes - yep - then he was able to lay his head down and rest.

So, how is Zach doing - well - Zach is on the bridge program for hospice - Zachary hadn't went pee since Tues. morning and it was Thurs. morning - I called and asked for fluids - Dr. Saving was very nice and ordered what ever that would keep Zach comfortable - the hospice nurse said that the kidneys are starting to shut down - but . . . last night Zachary needed help to get up and guess what - he peed!!! YEAH!! and then again this morning - so, I bet it was just that he was very dehydrated - only, it was the one 24 hr. bag of fluids - only I'm thinking I'm calling in the morning to have another - it helped tons!! They had to keep increasing his continuous drip - but I think they've found a good rate - he's been comfortable most of the day today. So, is Zach having a good day - well, today I believe it's a good day - my definition of a good day for Zachary is constantly redefined. The heart ache is so real - but I'm taking advantage of every single moment - how I love my Zach!

Tomorrows the party!! Can't wait - we've all got our t-shirts and ready to party with a Teen Wonder!!

Thanks for everyone's support! I really do appreciate it - right now it's hard to have time for something or someone other than Zachary. We are very blessed to have our family and friends!!

Zach's mom - Nikki

Tuesday, July 26, 2005 9:37 AM CDT - ONLY 4 MORE DAYS TILL HIS B-DAY PARTY AT THE RAVE!!

I know I say it all the time - but it really is true!! We are so thankful for everyones support - it means so much -especially going through what we are right now - it's a hard time for everyone involved - I don't know what to say - the other person doesn't know what to say - so, just your presence & encouraging words mean so much!

Zachary is trying so hard to keep up the fight - he is so determined! He asked me why does he feel pitty for me -Then I remembered he said he promises he will never leave me - like a month ago - The fight he is putting up - it's to hold up his promise to me - I can see it in his eyes - he is starting to think that his healing may not happen on this earth - Last night when he kissed me goodnight - he said he promises he will see me in the morning - he sees right through me -he knows what I'm thinking and knows how to calm me down - He is the only person that can read me like that - That's my Zach - he knows when I need a hug or kiss and just someone to talk to - Here's something funny from when he was 5 yrs. old - We were driving down the street and I said hey - lets go get some KFC - I'm starting my diet tomorrow and I am craving some fried chicken - Zach said - why do that - it will be just that much more weight you'll have to loose - A 5 yr. old with that much insight . . . . That's my Zach! Now that's funny right there :-)

With everything that is going on - Zach asked yesterday if I could take him & Kris to Chicago for the day - whatever you can handle. He wants to go to the comic store there - we found Deathloc - with the missing piece to his Galactus - And Kris has never been to the Science & Industry Museum - Zach wants to show him around - Kris is such an amazing friend - God sure knew what he was doing when he put those two together! They're both goofballs!! :-) Zach said that Wednesday will be a good day for him - So, I guess that is what is on our agenda for Wed. Today we are heading over to St. Jude.

Thanks again for all your prayers & support!!

Zach's mom - Nikki

Sunday, July 24, 2005 7:54 AM CDT

One of those mornings when I wish I could lay back down and fall asleep. I think possibly I got 2 hrs. at best. Zach was up needing boosts of all his meds - I'm just starting to run on E -

Zachary was with his Uncle Tim yesterday - rode his go-cart last night after it cooled off - hah! that was a joke - cooling off to oh around 91 :-) Zachary has been wanting to ride it - it's been soo hot here and with him not drinking like he should - it's not a good idea. We all had a blast last night!! He lives across the street from a school with a huge parking lot - empty - and we were able to ride around all night - Zachary ate on Friday and Saturday - - - finally - a little at a time - better than nothing!! I found out he has been eating sour starbursts this whole time - that is why his tongue is blue - and that must be why he argued that he did eat something - same bag the whole time - so just one or two at a time - just never told me what he ate :-) I guess in his mind as long as he is eating something - that is all that matters!

Overall - Zachary's oxygen is much better than when we originally came home (he hardly ever needs his oxygen) & his pain level is easily managed with smaller boosts of dilauded - only 4 mg. boost instead of 10 mg. and with the continuous drip - the nurse stopped by and increased it this morning - pray that Zach will be able to relax - God is really taking care of Zachary!

We love getting all the support and uplifting messages in our guestbook!! It is such a blessing to have so many that cares and we truly appreciate EVERYTHING!!

Zach's mom - Nikki - this journal really reflects my lack of sleep :-)

Thursday, July 21, 2005 2:13 PM CDT

Today is one of those days that I look at all the things I have to be thankful for. Yesterday wasn't a good day for Zach - so, I try and not concentrate on what is wrong and wonder when is the next time Zach is going to crash - I am so emotionally drained. I decided to look at all the positive things - and not concentrate on the negatives.

I am so thankful for St. Jude and all the studies Zachary was able to qualify for. Because of that - Zachary is still here today. It seemed as St. Jude was coming out with brand new treatments and only able to have a few enrolled in them - and only the children that didn't have any further options - Zachary was always the last one before the cut off. The gene therapy and the new chemo combos and the new type of bone marrow transplant - all treatments Zachary was the last one before the cut off. God is so amazing! The LG study Zach was just in - all gave him more quality life! How thankful we are for all these treatments. As long as Zach has life - I will always have hope. Sure, I have moments when I cry and mad that it's just not fair for my Zachary to have to go through all of this. One thing for sure - Zachary's spirit is getting stronger - not weaker.

The emotional roller coaster is so real - and so draining - only God gets me through these times. Of course the help of other moms that are going through or have gone through the same things are so helpful. Thanks Jen & Marilyn - you have no idea what blessings you are!

Zachary is still on his continuous drip of pain meds and IV Ativan & Zofran - his oxygen saturation is still in the 80's - I am just so proud of him!!

Zach's mom - Nikki

Monday, July 18, 2005 10:23 PM CDT

Wow- Zach has had an amazing 2 days. Yesterday he needed 0 boosts of pain meds just a few doses of Ativan & Zofran and today only 1 boost of pain meds and a few doses of Ativan and Zofran. God is so good!!

Tonight Zach and I had a really good talk. I'm not too sure what to say or think . . . He said God wouldn't take me this far and then let me go to heaven. He said God's taken him this far - because there is something important for him. He's gone this far - God isn't finished with me yet! He told me that I had to let go of the worrying. It's when I worry that he notices that I'm not able to function - and he can see right through me. He said that if I would let go of the worrying and focus on God that I would be able to see it too. He told me not to look at him and see what is going wrong - but to look to God - He also said that I'm going to heaven before he does. He's going to be 86 and die of old age. How does a 13 year old boy have this kind of courage and insight on life and healing? My son said that he talks to God and God talks back all the time. The strength that Zachary has right now - it could only be from God. He doesn't eat - he hasn't ate for over a week - he sips on Apple juice - won't touch the nutritional drinks - There is no explanation how Zach's oxygen saturation levels went from 50o now 88 Is my own son who is only 13 teaching me a lesson so valuable and so insightful that I can't even grasp where his courage and knowledge comes from - - -

Thank you everyone for all the cards, encouraging words, prayers, and support!! We appreciate EVERYTHING!!

Zachary told me from day 1 that there is going to be a miracle ------- How did he know that? The fact that Zachary is still with us today with the strength he has today - that alone is a miracle! Zachary is truly a gift from God!

I love my Zachary and of course my Kylee too!

Nikki

Saturday, July 16, 2005 11:16 AM CDT

This morning is the best morning we've had in a very long time!! Zach woke up everyone in the house by saying good morning and walking around the house!! He's ready to do something!

Monday we came home with the knowledge that Zach could leave this earth at any moment - today he WALKED OUT OF HIS BEDROOM and wanting to do something! Yesterday the nurse asked something and Zach commented back - it's not like I'm dying! Meaning - Zach is going to fight this!! He only needed one big boost of pain med. last night along with his ativan and zofran - only 1 boost!!! It's been 3-4 boosts and an increase in the continuous pump every day - nope - not today!! So, what does all this mean - Zach is doing it Zach's style - - WHAT A FIGHTER!!

Everyone is still staying here and you can tell that Zach is doing so much better with everyone here! He hates for people to see him not his best - so he's good on putting on a show!

Who gets the glory for all this good stuff - - - Only God is the one who is at work! Zach has said from day 1 that there's going to be a miracle!!

Ohh HOW PROUD I AM OF MY SON - MY HERO!!

Zach's mom - Nikki

Friday, July 15, 2005 9:51 AM CDT

The last few days - I've realized how Zachary has touched so many lives. We've had so many visitors and so many people saying how much they love Zachary. It makes me just that much prouder of my son! You should see the Hero Clix collection now!! He wanted me to set them all up in the bay window - line them up and sort them by color.

Last night we took the go-cart for a spin around the blocks where we live. I called the police and they said have fun! So, that is what we did. I have some great pics of Zach, Kylee and Kris with the go-cart. I'll update later.

This morning Zach walked out of his room and layed down in the living room where everyone is at and watched a movie on his PSP - he said he doesn't fall asleep - he just rests his eyes. :-) He is fighting everything . . . YES, EVERYTHING!! So, I guess being a teenager is beneficial.

Everyone is still staying here and it's really nice having family time when Zach is having pain issues. That is one thing that breaks my heart - when he's having pain - God is always there to help with giving the right meds to get it under control. Right now he is very peaceful.

One thing Zach's friend Chassity made me aware is that everyone would like to know how Zach's sister Kylee is doing. Kylee is having a very hard time with everything and is upset alot of the time. She's going to her friend's house tonight and going to the Illinois Fair.

Thank you so much for all your support!!! We are truly blessed!!

Zach's mom - Nikki

Wednesday, July 13, 2005 11:29 PM CDT

NEW PICTURES IN VIEW PHOTOS!

Boy was tonight awesome!! I surprised Zach and let him pick out a go-cart today!! He thought he was dreaming. I was so full of joy being able to put that kind of a smile on his face. No one will ever be able to take memories away --- with the bonus of having pictures :-) Zach is such a fighter!

The whole time he is falling asleep then forgetting what he is doing - then waking back up and totally confused -- He grabbed his walking stick he bought on his class trip at the end of the year ohh around 4:00 AM - and woke everyone up and said good morning - I love you - do you want to all get in 1 bed and snuggle? Good times at wee hours in the morning with very little sleep - with the WHOLE family - AWESOME! Lots of laughing and love!! It's been really nice with the WHOLE family staying here and able to spend lots of time together. It's better than being by ourselves.

Again - what a fighter. The neighbor came over - Zach said I'm not sick - I don't have cancer - the whole time falling asleep and waking up and complaining about his headache. UNBELIEVABLE - The neighbor started laughing because Zach took his wallet out wanting to go to the store - then fell asleep for a few - woke up and would start on another mission - just is really really fighting to stay awake ane do everything he wants without anything slowing him down without a fight. He crashed as soon as he got home after going on the go-cart!

Zach is just so amazing! Loving every minute of our special time together as a family.

Zach LOVES having all his visitors! Thank you so much for everything - all the prayers and support mean so much!!

Zach's Mom - Nikki

Wednesday, July 13, 2005 9:22 AM CDT

Thank you so much for all the gifts, visitors, and prayers!!! We are very blessed to have so many people that love and care for our family!! Zach is loved by so many! He has the biggest heart - you can tell because so many people just think the world of him! I love hearing that - it makes me even prouder of my son!!

Zach had just an awesome time yesterday! He wanted to go out and hang with his friends. He perked up - he never likes anyone seeing him look sick - he is a fighter!!! Zach is going to fight this!

I uploaded a picture from the party in the photo album. We are making each moment count!! Zach loves his time with his friends & family!!

Zach's mom - Nikki

Monday, July 11, 2005 6:24 PM CDT

Zach is home!

We are celebrating his 13th Birthday tomorrow for anyone that wants to celebrate with him! SUPERHERO PARTY!!! He loves those Hero Clix!!!

1309 Lincoln St.
Pekin, IL

ALL DAY PARTY!!!

My phone number is 347-3625 - just come and hang out with Zach! He would LOVE your company!!

Zach's Mom

Thanks for all your prayers & support!

Monday, July 11, 2005 8:07 AM CDT

Zach had a very good night. He was able to get some much needed rest. It seems that the pain meds are going at a good rate.

He woke up about 2:00 a.m. and asked when was he going home. He should be coming home today once hospice stops by and gets everything started. He is still telling me to still believe - as he hugs me and said he loves me bunches. He drew a heart on my forehead and put a Z&M in it and #1 mom - Z&M stands for Zach & Mom :-) I didn't want to wash it off.

Plus, he is wanting to go see Fantastic 4 (I don't know how much he will be able to see) and go to Dicks to get a good putter for miniature golf. I think he had a dream last night winning a game of miniature golf:-) I'm sure as we head home he will make me stop at The Zone to get some more HeroClix - - - what a collection!!!

Thank you so much for all his visitors!! Please feel welcome to visit him at home when he gets there. He loves having visitors!!! Thanks for everyone's prayers!

A Believing mom!

Nikki

Sunday, July 10, 2005 2:26 PM CDT

Thank you so much for all your prayers. It's been very hectic and I'm at a loss for words as to what to update with.

Zach is in PIC - the Dr. tried explaining that it doesn't look good. His respiratory functions are starting to shut down and his pulse/ox is in the 50's. They have him here trying to get the pain managed on a coninuous drip and then sent home with it - possibly on Monday. Just keep praying for Zachary! He can't wait to see the Fantastic 4 movie!!!

He perks up whenever there are visitors - even though he is in and out - he still enjoys to know that people come to see him. Friends/Family mean so much to Zach. He is enjoying his HeroClix from everyone!!! Thanks!!!

He finally fell asleep this morning - and woke up with a whole lot of visitors today - he loved every minute of it!!! Thanks so much!

Here's a glimpse into the ZachZone - we went to the hospital yesterday morning and his nurse was from the Phillipines - anyways - he wanted to know how to say ass in her language - pwet - ok - so 6 Dr.s walked into his room - he said - oh look mom the pwet's are here :-o have you ever seen a bunch of Dr.s with a deer in headlight look???? It was priceless - of course it put a smile on everyone's face - how does he do that - so much pain and yet puting smiles on everyone elses face :-)

Nikki- a mom who is never giving up HOPE! MIRACLES - -

Saturday, July 9, 2005 5:11 PM CDT

Hello! I am Zachs aunt I am updating the page for Nikki. This morning they took him to OSF he was in extreme pain that Nikki was unable to manage with medicine so they admitted him to help control it. So right now Zach is in need of our prayers. Thank you all for your support. I am sure Nikki will update soon with more info. as soon as she gets a moment. Also Zach enjoys getting visitors so feel free he is in room G219.

Thursday, July 7, 2005 11:03 PM CDT

Sometimes - as a mom with a child that is sick - I get very tired of having negative news - you have no idea how much that I would love to have the the best news to give - for every journal - how there is a miracle that has happened right here on earth - how Zachary did get his miracle - well, the good news is that I will never give up I will ALWAYS HAVE HOPE! The not so good news is that Zachary didn't get his CT scan. The Dr. had nothing but negative things to say. How so badly I want to take him to a Dr. and have them pull out that magic wand and make my Zach all better.

The more urgent prayer request - is that Zach is able to get comfortable tonight to be able to go back to sleep. He's had tons and tons of pain meds tonight - and nothing is taking it away right now. So, all you prayer warriors out there - - - He needs your prayers!

UPDATE: Around 7:00 a.m. Zachary finally fell asleep - after having tons of different IV pain meds - I'm listening to him snoor - of course, I'm really needing that sleep too!!

There have been good times today - Zach felt good enough to go out and have dinner with my sister who turned 30! I could tell he wasn't himself by the end of dinner - Despite all the bad things that is going on - I'm going to focus on what puts a smile on Zach's face and give him just that - Happy moments - Zachary is so strong and I Know as for me - his mom - I WILL NEVER LOOSE HOPE!

I think of how I live for those moments to go out of my way to put a smile on Zach's face - just getting something he is craving for is exhausting - He craves McDonald's yogurt parfait & Arbies curly fries with cheese sauce and Hardeez chocolate milk shake - What an exhausting dinner :-) You know what - I very much enjoy those moments - I love that he is hungary and wanting to eat those things - I'm proud that he is driving around with me in my van in my passenger's seat - I love to be able to look over and he is sitting up and can't wait to pour that granola over his yogurt and spoon it up in his mouth - Then I get to enjoy that huge smile on his face - the satisfaction is like you wouldn't believe - He has that satisfied look because he knows I would go to the end of the earth to make him happy & the happy look of enjoying his whim -- Sometimes it takes me back when he was just born - how I wanted to show him off - he was the cutest baby ever - I couldn't have been prouder - It's that same feeling - so proud that even though the Dr. is telling me one thing - Zach is seated right next to me and wanting to go get Hero Clix and the Marvel action figures - I'm so proud that he is right there - I want to show him off - he still is the cutest boy ever!

Thank you so much for all the nice encouraging words and support!!! We are so blessed to have so many that cares!

Nikki - a very proud mom with lots of HOPE!

Tuesday, July 5, 2005 8:26 AM CDT

I can't begin to tell you how much your support means to this family! Thank you so much!!!

We had a very nice 4th of July celebration on the 3rd and 4th. Zach really enjoyed the fish fry and letting off fireworks. Yes, Zach was down there with the men and let off a few - only ones that he didn't have to run away from - he wasn't too happy with me. We had a huge grand finale!!

The 4th - Zach was grouchier - he always keep everything in - I can tell - when he's grouchier - that means he's not feeling well. He had a really nice time with his uncle Tim - he hung out with Zach and watched the fireworks. We went to the Pekin Park and watched their fireworks - they were really good this year!!

We need to head over to St. Jude - get a CT scan and possibly start radiation to his brain. Just need those prayers that God will make a way!

Never losing HOPE!

Nikki

Saturday, July 2, 2005 9:50 PM CDT

I want everyone to know that I'm so very thankful for all your prayers and support - we love and appreciate everything!!!!!

Almost the 4th . . . actually, Zach was hungary for nachos from the drive-inn - then all of a sudden firworks were going off - we believe they were from the VFW - anyways, we just got back from watching the fireworks - we pulled off the side of the road and watched.

The last 2 days for Zachary have been better. He's grouchier than ever - but, he's been feeling better. He takes plenty of naps - he reminds us all of a grumpy old fart - so, it's like having a grumpy old man with us all the time :-) He complains of too much noise, being too cold (it's summer??!!) , being out too late and needing to get to bed, and going to places that require too much walking - we are all getting a kick out of it - he absolutely hates being around smaller kids - they are way way too noisy and Zach is constantly yelling at his cousins to shut up and sit down - the whole time I'm laughing - thinking to myself that our grumpy old fart is about due back to his napping facility. . . Too top everything off - one of the things that can happen when there are brain tumors - the ability of controlling his mouth - The Dr. tried to explain that this is caused from the progressive disease in his brain - - - so taking him out in public is very very trying. It can get very very embarrasing. So, if you have a conversation with Zach - please be aware that he may say something that could be taken the wrong way.

Please note that when we leave home - it's because Zachary is wanting to leave and it's Zachary that doesn't want to use his wheelchair - so, please don't think that we are not listening to Zach - Zach could be sitting with his eyes closed and asking me - can we go to the Hobby store in Peoria to look at the Hero Clix - he is just too funny - he can't just stay at home - he said that's wasting time :-)

Thanks againg -

Nikki

Wednesday, June 29, 2005 6:39 PM CDT

Zachary really needs everyone's prayers!

Zach woke up and felt good enough to go see War of the Worlds - so we headed over there around 11:00. At the end of the movie Zach started to feel really sick and had a major headache - then as he got up to leave he blacked out - I hate when I start to freak out. I don't like Zachary seeing that side of me. I got him up - he said he was fine - I said that he had to go to St. Jude - So, we headed over to St. Jude.

In my mind - I wanted to take him there and I wanted the Dr. to make him all better - He's getting ready to turn 13 yrs. old - if Zachary made it to his 13th birthday - he would be cancer free - that is how I always imagined it - I told Dr. McCallister - no, you're suppose to make him all better - not tell us that Zach's time is limited. You're the Dr. - you're suppose to make him all better - his birthday is coming and I'm getting married - He's going to have the dad he always dreamed of - My heart is broken - as everything starts to happen with Zachary -

Am I loosing faith - I just want my Zachary to be ALL better and never have to think about radiation, experimental treatments, what next . . . . I want him all better. As I look over at him as he sleeps - such a peaceful look - God, Make Zachary all better - He deserves so much - Last night when Zach went to bed - He kissed and gave me a hug and whispered - Mom, I promise I'll always be here - I'll never leave you. I couldn't stop kissing him - I love him so much!

Thanks for everyone's support and prayers!! We appreciate everything!! Zach continues to talk about the Illini - today was the 1st - he didn't wear something Illini :-) Thanks Mr. Stowell!!

Nikki

Sunday, June 26, 2005 11:28 PM CDT

Hello Hello Hello - Thanks for checking up on my Zachary! The last 2 days for him have been much better. He has an appetite and he's been keeping it down!!!! About midnight he was hungary for scrambled eggs with bacon & cheddar cheese - so, I got up and made him what he wanted - anything for Zach - normally this would sound like I cater to his every desires and that I spoil him - well, I do - I do whatever he wants because I couldn't imagine what I'd do if I didn't have him here asking for those things and needing me - so, whatever he needs or wants - he gets :-) I just keep thanking God for making him feel so much better!!!! The steroids seem to be helping along with his other meds.

With the 4th of July right around the corner - like all boys - He LOVES those fireworks!!! With it being so dry - it makes me kinda nervous letting them off. I can't wait . . . .Our family has a big day planned on the 3rd of July with a fish fry.

Well, it's getting closer to Zach's 13th Birthday . . . I can't believe it - 13 ----- boy do I feel OLD! I'm going to have a comic book theme - superhero's - for 4 yrs. in a row he wanted a Batman Party - then for the next 2 yrs. it was Star Wars - So, this year we are having superhero's - He loves HeroClix - they are miniature characters from comics you play a game with - All I know that is what he's been enjoying - laying down and looking at all the characters - organizing them and learning the game. I'm gonna have the kids dress up like superhero's. I'll post the place, day and time of the party.

Thanks for everyone's prayers and checking on him. He loves reading his guestbook!

Nikki

Friday, June 24, 2005 9:16 AM CDT

So, what was the surprise . . . . . .?????

ZACH WENT TO CHAMPAIGN AND HUNG OUT WITH THE ILLINI BASKETBALL TEAM!!! THANK YOU JOE STOWELL JR. AND COACH STOWELL AND TERRY COOPER!!!!! THIS IS A MEMORY THAT WE WILL ALWAYS HAVE!!!

Coach Stowell (retired Bradley Coach) and his son, Joe, took us to Champaign to meet with Ass. Coach McClain - then Coach McClain took Zach to meet with Coach Weber and several of the players - Dee Brown, James Augustine, Warren Carter, Luther Head, Nick Smith and other players - I'm not too sure I'm doing this from memory - and I'm not the one into basketball - I will say that they are very very nice men! Zach got several things signed - including a final four basketball Coach McClain gave Zach. The secretary for Coach Weber let Zach go into his office to take a picture with the trophy - 2nd in nation!! Zach was in heaven!!!!

I didn't think Zach was going to be able to go - but, as soon as I took him his outfit for the day - he had instant engergy and ready to hang out with the Illini! He has been on a high since. Zach even got hungary and ate something on Wed. - he ate more than he has for a long time and even kept it down. It seems that the steroids are really helping - of course God has his hand in it!! The last time he was sick was Wed. morning and he is feeling good this morning - he requested cinnamon rolls - so, I made him what he wanted!

It's very hard as a parent to understand why the Dr.s are not wanting to do everything that I feel Zach would benefit from. I'm trying to arrange radiation to his brain and the Dr. is trying to tell me that I have to learn to let go. Why would a mom do that - I try to tell the Dr. as long as my Zachary is alive - I have hope - Hope that he can get all better! Why is he Dr. being like that - why is he trying to tell me that Zachary is tired - you need to let him sleep and let him be. Zachary is very tired of everything and he is wanting to be left alone. I will never just let him be - I am the only one speaking for Zachary - and I will make sure EVERYTHING is going to be done to make him all better! Zachary is believing in his miracle and it seems like I'm fighting against the Dr. with this - Keep those prayers coming!!!

Zach's mom - Nikki

Tuesday, June 21, 2005 6:57 PM CDT

Yes, Zachary woke up on Sunday - and he HAD to go fishing!!! Even though he was still feeling very sick - he didn't even think for a moment to stay home! So, Zachary caught 2 catfish and had a blast. Zach was so determined to go fishing he would just hang his head over the boat to get sick and went right back to fishing! He was sent home with some stink bait (thanks to Catfish Bill & Eric!) and a new tackle box! He loved the whole trip and loves showing off his new stuff! You should see his trophy.

Now for his surprise tomorrow . . . CAN'T WAIT!!! I'LL POST SOME PICTURES AFTERWARDS. Just pray that Zach will be alert enough to enjoy his time!

Zach just got back from St. Jude. As soon as we got home today - we had to go to the Jude. Zachary has been throwing up since Friday and hasn't ate anything. He's very very very NOT himself. So, everyone keep your prayers coming!!! The Dr. gave him a big slug of steroids and hydration - zofran and ativan aren't even touching it - the Dr. believes he has pressure in his brain from progressive disease - that would explain his drastic change in behavior. Right now I can't think clearly and my spelling is so off right now - as hard as I'm trying to concentrate - the harder it is. I have been on cloud 9 for a month - and the last few days have been - well, I'm at a loss for words.

Also, Zach started having trouble with swallowing and breathing again. The Dr. felt around and he still couldn't feel the tumors he usually could - but he could tell a difference in his cervical area - from the laminectomy. Zach had to wear a brace for a year - but in March '05 he quit wearing it due to the pain it would cause because of it pressing on the areas that it had spread to his bones - The Dr. wants Zach to wear a brace again to see if that would help his breathing and swallowing.

On top of it all - Spanky (Zach's pug) is sick - he started having the poops and pukes today - he threw up a cigarette butt (let this show to some of the smokers out there - that it doesn't just affect them) - so, now I'm being the nurse for Zach and now Spanky! Spanky had never been sick EVER - FUN FUN!

KEEP ZACHARY IN YOUR PRAYERS!!

Nikki - (Zach's mom)

Saturday, June 18, 2005 11:16 PM CDT

Hello Everyone!

Zach went to a St. Jude Party last night (in memory of Chad Creech) - guess who was there . . . Shaun Livingston's dad - well, Zach was given a autographed basketball - - - Zach was crying when they were auctioning off the stuff and the bid was getting really high for the basketball - he knew I wasn't able to get it - then at the end of the night Mr. Johnson gave Zach an autographed basketball (Shaun Livingston) and he's been carrying around with him ever since. Thank you!! He LOVES Basketball!!!! Zach really looks up to Shaun - so it was totally a God thang! He was also crying when the basketball that was signed by the Illini went too high - boy oh boy what Zach doesn't know!:-):-0! He's also an Illini Fan!

Zach needs your prayers - he had a tough day yesterday - then today was worse. He's been feeling really really sick and getting sick again. Today he's been miserable and he hasn't been eating again. So, just needing your prayers right now. Thanks!

We are still planning on leaving tomorrow morning for Rend Lake Resort - unless things aren't any better in the morning - So, please send your prayers this way!!

Believing in the power of prayer!

Also, please don't forget to send all donations for St. Jude to Terry Cooper for the St. Jude Run (his address is at the top of the page) - Memphis to Peoria Run - He's needing to raise $2,500.00. All donations go for finding a CURE for Childhood Cancer -

THANK YOU SO MUCH!!

Zach's mom - Nikki

Wednesday, June 15, 2005 11:56 AM CDT

I can't stress enough how much all of the support really means to us and how thankful we are that you check on Zach and really want to show him how much he is loved. THANKS!

Well, we have a really exciting weekend planned. On Sunday we leave to go fishing and swimming and just hanging out. We are going to Rend Lake Resort with USSA and enjoying time with other families that are in similar situations. It's really nice to make new friends! Then on Wed. there is a special surprise for Zachary - I'll have to update with pictures and everything after. Then on Thursday Zach will be going to a survivor dinner - those are always fun to celebrate that we've made it all this way!!!

Zach's been doing really good! He has needed extra pain med. boosts only a few times and has only had a few days where he has a headache and throwing up - so, Everything is still so much better than what they were - it really is hard to complain! He's able to eat a little and keep it down - so he has a lot more strength these days and able to get around all by himself and able to enjoy life in a big way! We really do serve an Awesome God!! Which means . . . in about 3 weeks Zachary will be getting his scans and stuff done!!!!!! How exciting - just about a month ago - the Dr. was talking about hospice and that he didn't see any need on checking his blood counts & scans - because hospice was to happen after we got back from the cruise - well, that was about a month ago - and I believe the Dr. is starting to realize that something awesome is happening with Zachary and I believe the Dr. is curious and wants to find out what REALLY is happening - because he wouldn't even consider a scan - now, he is the one wanting it!!!! So, what makes for the sudden change??? Zach has been trying something totally natural with the help of a wonderful dad! - and through lots of prayer - Zachary is no longer slipping away - and our Zachary is becoming whole again - right in front of OUR EYES! Are you wanting to shout and jump and scream and say - Thank you God!!!??? That is what I've been doing - even at the moments that Zach had needed a few extra pain med. boosts or getting sick - it still is a HUGE improvement!

So, keep those prayers coming - they really are working. Wouldn't it be awesome - Zach going into remission even after his 4th Relapse of Stage 4 Neuroblastoma - it could happen!

Thanks for all the support and prayers!

Nikki

Friday, June 10, 2005 9:07 AM CDT

Hello!

Well, Zachary went to St. Judes on Tuesday to have a check-up - everyone was so happy to see him looking and feeling good. He's lost about 40 lbs. since Christmas - but he's still looking really good (he had a few extra lbs. that could be lost ;^] The Dr. felt around in his neck and chest area and couldn't feel the tumors that he usually could feel!! :-) God is soo Good!! Zach really has been doing so much better!!!

I talked with the Dr. yesterday because Zach has been having headaches and getting sick again - but not nearly as bad as it was - The Dr. started him on some dilauded (sp?) and that has been taking care of the headaches. He's wanting Zach to come in the clinic today to get checked out again.

Also, keep our cousin in your prayers - Anthony has relapsed - he just had a bone marrow transplant in March. www.caringbridge.org/mn/atford

Just keep those prayers coming!!

Nikki

Monday, June 6, 2005 10:18 AM CDT

Zachary is feeling AWESOME!!!! All praises go to God and lots of thank you's for everyone's prayers!!! It is the greatest thing to see Zachary enjoying life!! May 17th was the last time he needed IV hydration and meds to keep from throwing up. That was the last day he threw up and May 21st was the last time he needed IV morphine. He's just taking time released pain meds and they are doing the trick! What has happened . . . . all that matters to me is that Zachary is doing so good right now. What did I say - God is Good ALL the time!! It came to the point when I was so worn out physically and spiritually I HAD to let go and God came in and took care of everything . . . HIS way!

So, what to do what to do . . . IT'S SUMMER TIME - IT'S TIME TO HAVE FUN - I SEE ROAD TRIPS IN THE NEAR FUTURE!! I believe Zachary is wanting to visit his friends - - - and visit a few places that he's never been to.

The wedding is still set for August 27th - which is coming up soon - John leaves tomorrow morning for Canada for his job :-(

I guess it's also time to head over to St. Jude for a check-up . . .

Thanks for all your prayers - just keep them coming!!

Nikki

Wednesday, June 1, 2005 11:30 PM CDT

Hello!

Zach felt really good this weekend and was able to enjoy his camping trip. He really enjoyed his fishing - didn't catch anything though - except for fish that were the size of bait :-). Yesterday he went on a field trip with his class (IA and Galena, IL). He really enjoyed the slide at the ski resort. He didn't care too much for the ski lift ride . . . he's afraid of heights :-) Anyway, I could see it in his eyes he was in heaven being able to do what the rest of the kids were doing. I was really nervous for him to be doing that - but he is trying to tell me in his own way that I have to let go - he is getting to be a grown teenager. . . . something I'm not ready for. The kids had a lot of fun. Thursday is a 1/2 day of school and it is their last day.

Today Zach has been able to eat really good - at least for him. Since May 21 Zach has been feeling really good - there has only been a few days that he has been having a lot of pain - Lean on God and he will give you your heart desires! All I know it has been a really nice time with Zach and watching him with a smile on his face - at least most of the time!

Thanks for all your prayers - just keep them coming!!

Nikki

Friday, May 27, 2005 9:46 AM CDT

Hello everyone!! Thank you so much for all the encouragement!!

Zach went to school for 2 hours on Tuesday and on Wed. he woke up to get to school when it started. I was on cloud 9 until he called and was really sick and in a lot of pain. It is so easy when Zach feels really good to pretend that everything is A OK - it is a coping thing I guess - He really hasn't been feeling good since. He did go to Wally World yesterday - he decided it was time to buy a tent - he wants the whole family to go camping together this weekend. So, all 15 of us are going camping at Jellystone Park. I'm actually excited about it. Zach is wanting to go fishing.

John is getting back just in time to join us. He's been away on a business trip. I guess I better get a cleaning the house and getting stuff together for the camping trip - one word - procrastination - . I've never really been fond of camping - but to see that smile on Zach's face looking forward to the trip. He is just so excited that the WHOLE family is going!!!

I let him pick out the tent - he picked out an 8 person tent - he even walked up to the salesperson and asked if they had Coleman brand tents instead of the Ozark brand (Walmart brand) they did - only 1 size (8 person) - sometimes . . . he is so funny about some things and the brand of things he is always making sure that he is getting good quality . . . hmmmmm I wonder where he gets it :-)

Roughing it - I don't think I'm cut out for the roughing it -

I want to do whatever puts a smile on my Zachary's face - Kylee is even looking forward to it - the swimming part is what appeals to her :-)

Thanks for all your prayers!!

Nikki

Monday, May 23, 2005 2:34 PM CDT

We are back!!! What an awesome time!!!! That was the BEST vacation we have ever been on!!!!! We recommend the Disney Cruise!! We had surprises for us everyday and was able to relax and hang out with the Disney characters!

Thank you thank you thank you!!!! All your prayers are working - we left the sick weak Zachary somewhere - and picked up this energized perky Zachary that was actually eating!!!!! He was able to eat a few bites for each meal and even kept it down!!! God is so good! Zach and Kris hung out at the teen Aloft - a hangout for teens and would order room service at 2:00 a.m. - Zach would eat like 2 bites - but Kris . . . I have no idea where he puts it. The smarty pants - there was a scale in one of our bathrooms - we all weighted ourselves - the only person that lost weight - (2 lbs.) was Kris - the one that ate and ate and ate - !!! I have a picture that I can post on the site to get him back :-)

Zach & Kris went on a cruise with the teens that took them to Atlantis - seen dolphins and they said they had a blast. After the cruise Zach was feeling sick and really hurting - so he went back on the ship and took a nap. When he woke up - he was back to the perky Zach. By Saturday night - he walked to dinner - he didn't even need his wheelchair. The smile on my face that night!!! So, because of everyones prayers . . . Zachary is refueled and feeling great! All that matters to me is that he is feeling good right now and has minimal pain.

I'll be posting pictures soon from the Cruise.

We are so blessed to have so many people that care for us and are there to support us in any way!

Nikki

Monday, May 16, 2005 9:25 AM CDT

HEY Everyone!! I want to say thanks for supporting our family with all your prayers and encouraging words in the guestbook!

Wednesday morning we leave for Florida and on Thursday we set sail on the Disney Cruise (3 day)! We are very excited. I'm having a pizza party tonight - so, if anyone wants to stop by you are welcome - 6:30 Monday Night.

I just talked to my mom and commented how the definition of a good day for Zachary changes each day. My heart aches so much - I just want to take everything and bare it myself - A little of Zachary slips away - then I think Zachary always bounces back - he will bounce back - he is still having his good days - but, each time a little of Zachary is gone. God is still ALWAYS good. In the middle of this - you can feel God - you know he is there giving us peace and strength - and giving us an awesome message.

A part of Zachary that will always be there - the comedian side of Zachary. He is still always putting a smile on my face! How amazing is that!! Still trying to cheer everyone else up!!! He is just the most amazing gift from God!!! I don't know who teaches who more - I believe I have learned more from Zachary than what Zachary is learning from his mom. I don't know - I make alot of mistakes - you learn a lot from mistakes!! Zachary is teaching me how to be a better mom / person.

The Dr. ordered IV pain & nausea meds and hydration for Zachary. Some days he gets sick all day long then others he just feels sick. So, we have been hanging out at home - besides our trip to Wally World yesterday!!! He didn't even want me to bring his wheelchair - he just pushed the cart for support. I can't believe his strength sometimes!! He doesn't want anyone to look at him and come to the conclusion that he isn't well - ask him yourself - he will tell you he's great! He's just fine - - -

Thanks again!! Keep your prayers coming!!! I will update Monday morning after we return from the trip.

Nikki

Thursday, May 12, 2005 1:42 PM CDT

I would do anything to have the awesome 3 weeks we had!! Since yesterday morning, it's been completely different than what it has been. You can't even touch Zach without him being in extreme pain. He has taken so much pain meds and yet he is still hurting - and he said after I had given him 3 extra boosts of pain meds that he didn't want anymore. He said it's not going away - so just stop.

I have never realized how much I take for granted good days. Then when you have really really bad days - you would do anything to just grab on to that one good day. I look back and realize how you took that good day for granted. Zach has been throwing up non-stop - even after going to the hosptial this morning getting 2 bags of fluid and IV zofran & ativan. The Dr. mentioned what it could be - and I don't even want to think like that. So, everyone - keep those prayers coming!!! Zachary really needs those prayers right now. Never will I ever give up hope!!

I wasn't too happy with the Dr. today - Zach looked really pale and he looks like he would need blood and acts like it - after going through this for so long - I can just look at Zach and tell what he is needing. Anyways - they didn't even check - the Dr. stated no.

Just pray that Zach will feel good - and that we will be able to go on our cruise on Wednesday (May 18th)!

Thanks for everyone's support!!!

Nikki

Monday, May 9, 2005 9:37 PM CDT

Hello!!!

We had a really nice Mother's Day! Hung out with family all day long. Zach & Kylee - other than their arguing - they did special things for me - it was really nice. I sat back and watched Zach play a really safe game with his grandpa . . . NOT!!! Grandpa surprised Zach and got 2 knives for him out of this catalog Zach is always looking at - it has knives & swords. Anyway . . . they were throwing it at the house (cedar siding) and aiming for a target. I guess whoever gets it in the electrical cord lost . . . ??? :-0 Anyways - I guess I know how to spoil ALL the fun - I had to ask my dad if he thought that was safe . . . MEN - they can be so child like :-)

As John & I worked on the yard this evening - he was spraying Zach & I with water (Zach has a central line that can't get wet) - I stated - John do you have to act like such a kid - Zach said out loud without skipping a beat - John does everything like a kid :-) Then I remembered why I fell in love with him :-)

We will leave on May 18th for our 3 day Disney Cruise :-) It's Kris's birthday on the 18th. Zach is so excited!!!

Zach is doing good - Thanks for all your prayers!!

We are so blessed to have so many people that cares about us!!

Nikki

Friday, May 6, 2005 10:41 AM CDT

Update: We ARE going on the Disney 3 day Cruise! Leaving on the 18th and Kris gets to join us! We are very excited!

It is so amazing how you can't describe it - but God takes all that anxiety and replaces it with peace in the middle of a storm. I feel like a complete different person today. Zach is in his room resting and I believe watching a movie.

I scheduled to have pictures taken at A Moment in Time. We are even taking Spanky with us! I really looking forward to having awesome pictures taken of our family.

I had made plans to go on a Disney Cruise next Wed. - but, Zach doesn't want to go without his best friend Kris. I told him we can take his Grandma & Grandpa - but, I guess nobody replaces Kris. So, I guess we are going to hang out here. He said something about going to the Dells next weekend. It's probably for the best - he's still having problems with breathing & swallowing.

In the middle of everything that is going on - I have realized that I have no right to ruin these moments with worrying. I have to put all that aside and enjoy every single moment - Besides - it Mother's Day weekend!!! I am so blessed to have both of my children here to celebrate with!!

Well, I am going to finish cleaning my house and enjoy the weekend with my family!

Thanks for everyone's support!!! Keep those prayers coming!!!

Nikki

Thursday, May 5, 2005 7:28 AM CDT

Wow - a new journal

I'm getting ready to go wake my baby up. He has to go to St. Jude this morning. He started to have troubles swallowing last night. I didn't know if I was going to have to take him in to the ER last night. But, he finally fell asleep around 2:00 a.m. and has been sleeping since - of course he never wakes me up . . . So, everyone keep those prayers coming - I can say that now I'm not holding together too good. I just need to lean on God - this is hard right at this moment. Watching Zach having to put all he has into being able to swallow and the whole eye thing . . . this is just one of those moments . . .I need to give everything over to God -

Zach did go to school for about 2 hrs. yesterday - when he got home is when I noticed him having troubles. Zach never complains and keeps everything inside because he tries to protect me - I think that is part of why I feel like I'm starting to fall apart - Zach is one person in my life that is always there - he is there to cheer me up, there to protect me, there to just give me a hug . . . mom, then he hugs me and kisses me - I love you so much - it's these moments that I believe I'm afraid of - loosing these moments here, now - I know being a Christian I have God in my life and because of that . . . I shouldn't be afraid - I won't loose anything forever - It's just a struggle that giving everything over to God -

Thanks for everyone's prayers and support!! We are so blessed to have so many friends and family that care for Zachary!

Nikki

Wednesday, May 4, 2005 7:56 AM CDT

Well, Zachary went to school yesterday afternoon. It takes a few days before Zach readjusts to the increase of pain meds. Now, he's back to being Zach!! :-) I am learning to never take these times for granted. He's sleeping right now - he stated last night that he is going to school when he gets up and ready.

His left eye has really been bothering him for a week or 2 - now it's starting to look different and is starting to worry me. I've just been passing it off to him probably having allergies and me coping to really not wanting to know really what's going on. Friday we go to St. Jude - it's kinda funny. The Dr. stated see ya Tuesday Zach - Zach replied no - Friday. The Dr. is wanting Zach to come in both on Tuesday and Friday and Zach is only wanting to go there once a week. The Dr. said ok - if you think you don't need to see me before then - Zach said NO - I'll be ok :-) Zach after all this time has really gotten to the point that he tries to stay away as much as possible unless he is in really need of them.

Zach is really wanting to go on a cruise. So, I guess that is our next adventure. I will be talking to the travel agent to see what is the soonest cruise available. This time I believe it will be Zachary & he's wanting to invite his friend Kris - and Kylee & I - it should be a nice time - able to give Kylee lots of attention and being with Zach & possibly Kris. After taking him away from his mom & dad for a week in CA - I don't know if they will let him go again - ? John just got a promotion and he really can't leave right now (with the Wedding & Honeymoon coming up).

Zach is really doing good overall - So, we are able to keep busy . . . He's really turned into a shopper !!?? He loves his Wally World - his next favorite is Game Stop. With having a PS2, XBox and a PSP - there are plenty of choices . . . I even like the PSP.

Thanks for all your prayers and support. It means so much to us!! We are so blessed to have so many people that care!

Don't forget - we are raising money for St. Jude to honor Zachary. The information is at the top of the page. Thanks!

Nikki

Saturday, April 30, 2005 10:49 PM CDT

Zach and Kris are in the background having fun!! Zach is having Kris over - they are going to be up all night playing PS2 & goofing around. We just got back from going to DQ's - Zach didn't want anything. Right now they are in the kitchen getting some juice to drink and Zach's taking his meds. They are not too happy with me right now - having to get up early in the morning to go to church.

After Zach's trip to St. Jude on Friday - he started feeling back to his normal self. The Dr. increased his pain meds and he hasn't had to have extra boosts of meds. He's feeling really good. :-)

This morning we all got up and had brunch together (John, Zach, Kylee and I). John and Zach hung out all day - while Kylee and I worked on a school project - we had some much needed one on one time together. Kylee starts to feel alone - so she needs extra attention - especially on the days that Zach is feeling really good. Next weekend we are getting our pictures taken together.

Thanks for everyone's prayers and support - just keep those prayers coming!!

Nikki

Friday, April 29, 2005 8:52 AM CDT

Zach is snoozing away.

Yesterday Zach's class put on a musical at school - both in the morning and at night. Zach was the sound man - so he said they depended on him being there. Despite the bad night he had Wednesday - he got up - took some pain meds and went to school yesterday. Then I got a call he needed some IV Zofran yesterday morning - because he didn't want to go home - he wanted to stay at school. Then I got another call in the afternoon to come get him - he needed to go to bed. I gave him some pain meds and he went to sleep. Then he woke up all on his own to do the play at night. I packed my camera and off we were to school. I couldn't have had a bigger smile on my face to be able to take pictures with Zach and his classmates. Zach watched them in the van on the way home. He loved every minute of it!!

Lets see - 3 great days in a row!!! Last night wasn't good - I ended up having to give him more Zofran, ativan and some extra morphine - then off to sleep- that's always nice to watch - a peaceful sleep for Zachary. My breaking point was last night - after Kylee & Zach was sleeping - I just cried out to God - my baby can't take any more - then like the song goes the peace that passes all underdstanding - God gave me peace - at a time that I was asking God how am I going to be able to handle this -

How strong is my Zach - let's see . . . while he was feeling so miserable - I was giving him some IV meds and he was cracking jokes - he is still protecting and taking care of his momma - how is that - I'm suppose to be the strong one . . . . He can look straight through me sometimes and knows exactly what I'm needing - and a good laugh always works for me - my Zachary always can get his momma to laugh! :-)

Well, I better get ready to take Zach to St. Jude - he needs to be checked on.

Thanks for everyone's prayers and support!!

Nikki

Wednesday, April 27, 2005 7:57 AM CDT

Hello!

Sorry for the delay in updating. It's been busy here! Yesterday was Kylee's 10th Birthday. . . boy, do I feel old!

Great news - Zach has had 2 really good days in a row! He went to school on Monday for 2 hrs. and almost all day yesterday! He has really been more like himself.

On Sunday he started feeling better later in the afternoon. St. Jude runner, Terry Cooper stopped by to see Zachary - along with his sister Patty. Zach asked if we could have them over again - Zach is usually really quiet - and Terry's way out - Zach spoke up and asked him to look at his sword. Yes, Zach is starting to really get into swords, knives - those kinds of gadgets.

Yesterday afternoon - our Youth Pastor from church stopped by with something from the Pastors and the Elders from the church - Zach's new favorite basketball team - MN, Timberwolves - Garnett is his favorite player! He got an official hat and jersey - boy did that make his night! Thank you Trinity! Zach really enjoyed opening it!

He's still in bed snoozing away right now - he had trouble sleeping last night. He never complains about anything - but, I always sense when he is not feeling good. Just keep those prayers coming!!!

Thank you so much for all your prayers and support!!!

Nikki

Saturday, April 23, 2005 3:15 PM CDT

Hello!

Zach & Kylee are staying the night with grandma. John & I get to have some much needed time to ourselves. It gets to be very stressful with everything that is going on.

Zach had a visit to St. Jude yesterday - his blood counts were good. He's been very tired lately - his pain has been very minimal. He hasn't felt like going to school yet - he said next week he will feel like it. So, just keep those prayers coming!

Yesterday after St. Jude Zach was craving Red Lobster and with him not eating - I was willing to take him where ever he felt like eating. After dinner our waitress stated that the dinner was taken care of by Red Lobster and some cops that were there raising money for the special olympics. That was so nice!! Thank you so much - it made our day - Zach couldn't believe it. To top our day off - we were able to communicate our needs for a new treatment that is getting ready to come out - they haven't tried it yet. The preliminary results sound very promising and I can't wait for the actual treatment to come available. So, please pray that everything goes smoothly and that the treatment becomes available to Zachary ASAP!!! It's natural and something that is totally from God!! Also, thanks to Super Jake's dad for all his work in expiditing it!!!

Zach started to feel much better later in the afternoon. Sunday afternoon the St. Jude runner is going to come by and visit with Zachary. I haven't told him yet - it's going to be a surprise.

Well, thanks for everyone's support!!! It is such a blessing to have so many supporters! Keep those prayers coming!!

Nikki

Thursday, April 21, 2005 10:16 AM CDT

Hello!

Zach is still snoozing away. He is planning on going to school for an hour or 2 this afternoon. I'm so happy that we have the right pain meds right now to make him comfortable and able to function like Zach. He still feels sick to his stomach and unable to eat like normal - he did eat a piece of pizza last night - that made my night. Mornings just isn't the best time for Zachary. He starts perking up around 3:00 or so. Just keep those prayers coming - they are working!!! Zach said that he knows that a Miracle is going to happen - so, I'm going to believe with him.

The St. Jude run is coming up - and there is a runner that wants to run for Zachary. So, we are going to raise some money for St. Jude to give to the runner. Runners have to have a certain amount of money in order to run - so let's support St. Jude!!!!! They do so much - a lot of research is done to find a cure for Neuroblastoma - and of course all the other childhood cancers. Neuroblastoma is one of the lowest survival rates. They also provide housing while in Memphis to have treatment and provide full coverage for any child that doesn't have insurance. You may mail checks to me made out to St. Jude to my address:
Nikki Allen
1309 Lincoln St.
Pekin, IL 61554
I'll forward the money to the runner. This is such an honor for Zachary !! After I talk to my brothers neighbor - I'll get an address and name of the runner - so that everyone could mail it to him.

Also, did you see the Pekin Times yesterday? Some friends that attend GSLS with Zach & Kylee won the dream home. They said they purchased the tickets to help Zach out. Thank you Berchtold's! It means so much to have so many supporters for Zachary!!! God has blessed us so much!

Thank you so much!

Believing in that Miracle!!

Nikki

Tuesday, April 19, 2005 7:22 AM CDT

Hello!

Finally - I was able to sign on to update journal - for some reason I've had troubles with this. I'm not even gonna try changing pictures today.

Friday was a really good day for Zachary! He was able to get up and head over to Disneyland. I ordered room service for breakfast then we headed over to ride Soarin. That was a lot of fun. The park didn't close till midnight - it was a long day! We had to wake up at 3:30 a.m. to get packed and head over to the airport - with it being last minute we couldn't be picky on the flight times.

Saturday Zach woke up and was really sick. I was confused - he had such an awesome day on Friday. Then by late afternoon he was feeling good. Both him and Kris had fun on the flight home. Then he was invited to a party - so him and Kris headed over to the party.

Sunday Zach slept until 3:00 in the afternoon - when he woke up he felt really good. By 9:00 p.m. he was hungary -he wanted garlic chicken - so I ordered chinese- He ate a plate full of chicken for the 1st time in like 3 wks. he ate something and kept it down. YEAH!

Monday - got up to head over to St. Jude - Zach didn't even feel sick! And . . . he didn't need extra boosts of morphine on Sunday and Monday - He is having a really good days - so you know what that means . . . I'm having really good days and as a result - everyone around me is having good days. PRAISE GOD! Our prayers are being answered. He wants to head over to school for an hour or 2 today. He still on high doses of pain meds - it's just evenly distributed throughout the day. All I know - it is so nice to see Zach walking the last 2 days and have a smile on his face. He did eat 2 shrimp scampi and a few crackers. Zach really wanted to have more good times and that is what he is getting!

Thanks for everyone's support!! Those prayers are working!

Nikki, Zach, Kylee, and John

Thursday, April 14, 2005 10:20 PM CDT

Hello Everyone!

Let's see . . . . what have we done since Tuesday . . .

Well, Wednesday Zachary woke up and was in a lot of pain - so I gave him a good slug of morphine and ativan and zofran - but he still was sick - I let him sleep for awhile - then about 1:00 he wanted to head over to Hollywood to see the walk of fame and the homes of the stars. The Chinese Theatre was really cool - tons of freaks stand out there -then we headed to Beverly Hills & Bel Air - really nice - we even seen the home that American Idol uses for the contestants. Just pray for direction in giving the right meds to make Zachary comfortable - this is really tricky - Neuroblastoma is cancer of the nervous system - so the pain involving nerves - it is really hard to keep the pain away - I know that God can do all things!!

This morning I woke up early and gave extra meds through his IV while he slept - to kind of get ahead of everything - that seemed to help -we headed over to Goofy's Kitchen for a character breakfast - Zach just slept - he did eat like 2 bits of mac & cheese last night! He just doesn't eat - so pray that he is able to eat. Then we headed over to Disneyland Resort. After a lady in a wheelchair ran into Zach - he decided to perk up - he started laughing so hard - those are the moments we charish - not knowing. He picked something out for Gaby - it was really neat what he picked out! Zach wanted to ride a ride just with Kris - so they had fun on the bobsled ride. We all just got back to the room from hanging out at Downtown Disney - now they are getting ready to go swimming - Today has really been a really good day for Zachary! Kylee had alot of fun at Libby Lu's - very neat - they do girls hair, nails (tons and tons of glitter!!!!) and then they make their own beauty products - flavor, color, glitter - very neat!

Thanks for everyone's support - your prayers are really helping!

Nikki, John, Zach, Kylee, and Kris

Tuesday, April 12, 2005 9:38 PM CDT

Zach right at this moment is laying in bed singing with Kris. The day started out not so good but is ending up being a really nice day! Zach hasn't ate for like 2 wks. well he just ate about 8 bites of Mac & Cheese and eating Goofy Gummy's - I'll have to stock up on some Goofy Gummy's!

Yesterday was awesome. We went to Venice Beach - known as muscle beach - it was soooo fun! It was only about a 1/2 hr. drive and Zach loved it. It had tons of shops that Zach loves. He is still needing all of his IV meds and hydration - not eating or drinking. It's been about a month since he's ate a good full meal and about 2 wks. since he last ate - he is just not wanting to eat - really unlike himself. This just seems to be like I'm stuck in my worst nightmare.

Zach's wanting to go to hollywood tomorrow and back to Venice Beach - so, anything that would make him happy. I have noticed that about 6:00 p.m. Zach starts to feel better which is 8:00 p.m. central time.

We've been going down to have a character breakfast every morning and today we went to downtown disney. Zach went shopping at the lego store and Kylee went to the build a bear store then we finished the day by eating at Rainforest Cafe.

Just keep those prayers coming!!!! Thank you so much for all the support!

PS: I updated the pics!

Nikki - Zach's mom

Sunday, April 10, 2005 9:19 PM CDT

Hello from SUNNY California!!!
Our flight was cancelled from Chicago Airport - we were rescheduled on a 6 hr. later flight. So, we left Chicago at 5:30 and got to California 4 hr. and 20 min. later. Kinda bummed out - then we checked in at the Disney Paradise Pier - (Zach with a puke bag throwing up)

They came out with a HUGE balloon arrangement and said congratulations you are our Big Kahuna Family!!! A Special Family - with many adventures in store for us!! Free valet parking for one! Wow it was neat - they took a picture of us - none of us had any sleep for like 2 days - I'm sure they were thinking . . . boy what an exciting bunch . . . . . . NOT! We had to force a smile on our faces for the picture! But, it was special to be greating like that - at least it is starting to go a lot better.

Well, Zach just had to come - but he just hasn't been himself. On Friday afternoon he started to act more like himself . But then he woke up on Saturday morning back to sleeping and in pain. This morning Kris and him were singing some songs that Zach has on his laptop. Yes - his friend Kris came with - I surprised Zach and bought one for Kris!!

So, Zach has been sleeping in bed all day - but looking forward for tomorrow - he is starting right now to wake up and acting more like himself. He still has his IV - fluids, pain meds. and other stuff here - so I'm being his favorite nurse - only I wish I could be just a mom!

We are still having fun! John forgot his USB cable to be able to download pics - I look for one at downtown disney! Kris, Kylee and I went to Disney California park and this morning we all had a Character Breakfast with Lilo, Stitch, Minnie, and Pluto! VERY fun and the food was really good - Zach slept - but it was really funny - Pluto walked up and Zach woke up and said - could you sign my book twice please? OK . . . ?!

Keep those prayers coming!!!!!! It means so much!

Nikki, Zach, Kylee, John and Kris - from sunny CA

Thursday, April 7, 2005 9:34 PM CDT

Hello Everyone!

We got back from St. Jude around 4:30. They ordered him a wheel chair - he's having trouble walking - with pain and really not alert. Zach still needs everyone's prayers!!! He can't stop throwing up - I keep IV zofran and ativan in him around the clock and the morphine for the pain - but it just isn't helping. The Dr. said something about starting something new tonight when I called him. We have an awesome Dr. - he gave us his home number to call at any time.

So, everyone keep those prayers coming!! Zach is really wanting to leave to California on Saturday. He keeps aplogizing - he thinks that it is his fault for being so sick.? I keep explaining to him that he is totally wrong - how can it be your fault Zach?!

He is such a lovey dovey - he keeps telling me how much he loves me and is always holding my hand and wanting to cuddle ALL the time. He makes me feel like a very loved mom!! John means so much to Zachary and Kylee - but there is a special bond between John & Zach - that makes me so happy - to see that Zach's wish to have an awesome dad has come true! Just think about a year and a half ago Zach kept trying to set John and I up - and now we are going to be married - Zach told me that he feels like a weight has lifted off of him knowing that I have John to take care of me. Zach has been the man of the house for so long and the past year for the first time he has been able to be the kid.

Wow - Zach is the most amazing son! Thanks again for all your support!

Nikki, Zach, Kylee and John

Wednesday, April 6, 2005 9:12 PM CDT

Zach really needs everyone's prayers.

He had a really rough night last night with pain. The Dr. said that every 15 min. give him more meds if he is still hurting that our goal is to keep him comfortable.

We had a really long day at St. Jude - we were there getting things in him to get his blood pressure to go up and to get him hydration, ativan and morphine. We were sent home today with IV pain meds and hydration. We have to go back up there on Thurs. & Fri. to be checked on. Zach just really needs your prayers. He is scared of what is happening.

The Dr. stated that if we wanted to do something special with Zach, now is the time to do that. So, we are heading to sunny California on Saturday Morning. Yes, I know that means that we won't be there for the St. Jude Dinner/Auction - but that doesn't mean YOU can not go! My family is still going and it would be really nice to support such an awesome place like St. Jude.

Just pray that we get Zach comfortable and not throwing up and he stays that way for the trip! He keeps having episodes that he can not stop until he gets 2 doses of IV ativan and zofran.

I keep playing yesterday in my mind - it's like I'm stuck in a nightmare. After his treatment yesterday - Zach wanted to go to school the whole 2 hrs. that was left - well, when Zach got home he crashed. His pain kept increasing. After we left St. Jude Zach just seemed to be floating - I believe God was carrying him through the different things he really wants to do - I believe with all my heart that God is still giving those heart desires Zachary has. Zach just had to go to school and be normal - that has been Zach's #1 desire - be normal.

Thanks for everyone's support!!!

Nikki, Zach, Kylee, and John

Monday, April 4, 2005 6:35 PM CDT

Praise Report . . .!!!!!
Zach's blood counts was about 3 times higher than what it was on Friday!!! Technically it's suppose to be lower - but hey, we will definitely take the higher blood counts. God heard our prayers and let Zachary start the next round. Monday - Friday again. He got the Vincristine & Irinotecan today. The Irinotecan was increased by 15 - so he got the maximum amount. I know it sounds kinda wierd to some people that my praise report is that Zach started his chemo - but, this is our hope - to get this beast under control! God is still a miracle working God!!!

So, today we walked out of the hospital after being there ALL day - it was beautiful out!!!!! Better weather than Memphis!

Zach has felt really good the last two days. The only pain meds that he has had is his time released meds - God is so good!! I just can not believe what a difference everything is from a week ago!!!! Last night he got out of the shower - it was a shock to me to actually be able to see that his left side is so much bigger than his right - but he's on this chemo and we will just believe that this is Zach's answer to prayer - this is going to be the stuff to stop it from growing!!! Pastor Mike and the Elders came Friday to the hospital and prayed over Zachary - it was really nice.

Remember - Saturday, April 9th - Fundraiser for St. Jude!!! Brimfield Pork Chop Dinner/Auction - Dinner starts at 4:00 and the Auction starts at 5:00. Please join us and show your support for Zachary!!!! Call me at 309-303-8649 if you have any questions or want to join us.

Hope,

Nikki, Zach, Kylee, and John

Sunday, April 3, 2005 8:14 PM CDT

It was such a beautiful weekend here! The weather was awesome!! Did anyone else forget this morning that it was daylight savings time??? I got up early to get ready for church thinking wow, I'm gonna be able to put makeup on & everything - then John called to remind me . . . . instead of 7:30 it was 8:30 and only had 1 hour . . . to get Zach up and ready and give all his meds . . . he didn't feel very good this morning so Aunt Tomi came over to sit with him while the rest of us went to church.

Zach felt better after his meds were kickin in - so we went out and enjoyed the nice weather and each other's company! Very nice time.

Well, tomorrow morning we go to St. Jude to start the next round of chemo - if his counts are able to take more. His WBC was only 1 - and his ANC was really low - so, not too sure if he gets chemo or will need blood products.

Remember April 9th - Benefit for St. Jude (Brimfield) - dinner starts at 4:00 / the auction starts at 5:00!!! Show your support for Zachary - I'm gonna get some buttons made - hopefully this weekend - I'll hand those out to whoever wants to come to support Zachary - It would be exciting for a big group to be there for Zach Man - show him how much he is loved!!!!

We are so thankful for everyone's support!!

HOPE

Nikki, Zach, Kylee, and John

Friday, April 1, 2005 2:29 PM CST

We got done early today - back from St. Jude!

Zach received all 5 days of meds and is feeling good enough to argue with his sister!

His jaw is feeling better and his pain is being controlled. He's a bit grouchy - but it's good to see him up and around even though he's biting everyone's heads off! :-o

His blood counts are really low - not low enough to need blood products. We really need to watch out for his WBC - careful with his line. So, the Dr. said they would have to check his counts on Monday before he started the next 5 days - everyone just pray that he recovers quickly from the meds.

The weekend is finally here - able to rest and hang out - instead of being at the hospital all day everyday!!!

Remember April 9th - Benefit for St. Jude (Brimfield) - dinner starts at 4:00 / the auction starts at 5:00!!! Show your support for Zachary - I'm gonna get some buttons made - hopefully this weekend - I'll hand those out to whoever wants to come to support Zachary - It would be exciting for a big group to be there for Zach Man - show him how much he is loved!!!!

HOPE

Nikki, Zach, Kylee, and John

Thursday, March 31, 2005 6:33 AM CST

Zach is snoozing away - after staying up till about midnight with his friend Kris - he spent the night again. Zach just loves hanging out with friends. It's kinda wierd how teenagers would rather spend their time with friends than family - it's like it changed over night - I'm just happy that he has such awesome friends to hang out with!

Kris went with Zach to St. Jude's - I could tell it helped him alot with having him there. Zach slept almost the whole time - Kris played PS2 & watched Dumb & Dumber & Waynes World. Then the whole night they kept doing things from Waynes World. Zach had 7 friends over last night too - we all went out to eat at Steak & Shake and then they came back to the house to watch Fat Albert. I'm getting ready to wake the 2 of them up . . .

It's Spring Break (no school) so Kylee has been able to come with us. It's good for Kylee to be there with us - to see what bubby does when he goes to St. Jude.

2 days straight Zach has been experiencing little pain - the meds are working!! He hasn't really been eating - his stomach is still bothering him -

When his friends are around - he just acts like the same old Zach - laughing & just putting smiles on everyones face by being a clown.

Even though the stuff that is going on - I can tell God is right there - never leaving our side. God listens to me and knows my hearts desires - God's love & the peace that I'm beginning to have - only because I'm allowing him to - I hate when I go in my coping stage - I start taking control of everything - instead of just letting go and let God -

Thanks for everyones support!!

Nikki, Zach, Kylee & John

Wednesday, March 30, 2005 7:07 AM CST

Zach had an awesome time last night. As soon as his friends started showing up - he perked up and was playing with them!

His treatment went really well yesterday - he got an extra bag of fluids and an extra dose of zofran before we left. Just to make sure he would feel good for the party. All I know is it sure was what Zach was needing - even though I am so exhausted I think I could have fallen asleep standing up :-)

They had fun playing the Dance Game for the PS2 - 2 people play at the same time and compete - and watching movies.

Well, we need to get ready to head over to St. Jude. Zach's friend Kris spent the night and I believe Zach is taking him up to St. Judes with him.

Thanks for everyone's support - it means so much!!

Nikki, Zach, Kylee, and John

Monday, March 28, 2005 9:22 PM CST

Guess what Zach just got . . . . . . HIS PSP that he has been dreaming about!! You should have seen his face!

Zach has been having a really rough time lately. He has been sleeping alot, IV pain meds, and not eating. After talking to his Dr.today Zach's disease is taking over. He still got his chemo - Vincristine & Irinotecan today. The Dr. explained that they had to cut down on the dose with Zach's bone marrow being weak. He will still be getting the chemo M-F this weak - and next week it depends on how Zach is feeling if he starts again on Monday for the next 5 days.

The bone marrow transplant is now out and so is the MIBG. Zach understands that if it gets to be too much - that he has the power to stop. The Dr. said that this may slow down everything and in 2 months they will restage him and decide if the chemo is doing anything. Never did I ever think that I would be here with Zach - I always just knew that one day he would be in remission again. A mom never gives up hope - God did that miracle for Zachary once - he can do it again. The only thing that I hate - is when he is having the pain and I can't take it away. I would carry it myself if I could.

Thanks for everyone's support!!! We love reading the guestbook entries - it really does mean alot. I know I've said that I never want to be negative on this site - but right now all I can express is what really is going on -

Never giving up hope!

Nikki, Zach, Kylee, and John

Saturday, March 26, 2005 9:51 PM CST

We are home!!!! So exciting - then I just felt like crying as soon as we got here. Just overwhelmed with all different feelings - anger, happy to be here, miss everyone so much and not wanting to have to leave for a long period.

I came home to my favorite color roses and 2 Easter Lilly's - John is the best man ever - God couldn't have put a better man in my life - We are so blessed!! John cleaned and picked up the house - even organized the laundry room!!! How many men do that for their woman??? :-):-o

Zach was on the phone till about 9:00 tonight then him and John went to Wally World - I think he was going through withdrawls from the place while we were in Memphis - 3 whole weeks without Wally World !!! That is Zach's most favorite store. I think they went to look at PSP games . . . .

Zach has moments when he feels really good - then all of a sudden he has pain and feels sick - Thanks for everyone's prayers - because I believe it has been better today.

Zach is having a party on Tuesday and Wednesday night with his friends - he is soo looking forward to it!!!! (so am I) I love to see that smile of his - nothing like it!

Well - we just got done coloring the eggs for the Easter Bunny - Happy Easter!! Thanks again for everyone's prayers and encouraging words in the guestbook!!!

Hi Jacob and Jen!!! We miss you guys already!!! Praying for you guys for peace and a speedy treatment plan and a going home party soon!! We really enjoyed spending time with you guys - who knows maybe we will be neighbors again soon . . .

Nikki, Zach and Kylee

Friday, March 25, 2005 12:56 AM CST

The surgery went very well. Zachary now has a line!!!

Zach has been having pain issues - B Clinic got him some different pain meds - believing that this will keep his pain under control. I told him when he woke up in recovery this morning that he is the bravest person I know - I'm so very proud of you. He started to cry and told me not to say things that made him cry. I'm so blessed to have 2 amazing children.

Well, we are getting ready to leave in the morning!!!!! We are checking out of here and heading home!!!! Zach can't wait - he said he misses Spanky and his friends.

Wow - Easter at home - Boy do I miss John and Kylee!!!!!

Thanks for everyone's prayers and encouraging words in the guestbook!! Just keep them coming!!

Nikki, Zach and Grandma

Thursday, March 24, 2005 7:37 PM CST

Wow! It's exciting to log on to the computer and read all our messages letting us know you guys are praying for us and there for us! We are so blessed to have such good friends and family!!!!

Missing home!!!!!!

Well, Zach is going in for surgery at 6:30 a.m. to get his double hickman in. After that we head for home Saturday morning. Can't wait - we are so excited to be heading home!!!

Zach starts chemo on Monday morning. It's a M - F chemo off 2 days then M-F then off 7 days then start it over M-F off 2 days then M-F then off 7 days . . . I believe it will be 3 cycles of that with Irinotecan and Vincristine and back to Memphis for restaging - pray that this will be the stuff that gets rid of this beast!!! If it cleans his marrow after 3 treatments then they will harvest it and send us to CHOP for the MIBG treatment a couple times. Then he will have 3-4 more chemo cycles then back here for the Bone Marrow Transplant to use my marrow.

Zach needs lots of support from everyone - to encourage him to fight this and beat this Neuroblastoma once and for all!!!! He has been having a lot of pain - and I HATE when he is having pain and I'm not able to take it away - one person that can help - God - so please join us in lifting Zachary up in prayer to keep the pain away and to get the Neuroblastoma in NED status !!! Sometimes when the pain gets so bad -he says things that isn't so positive.

Thanks again for everyone's support!!!

Nikki

Tuesday, March 22, 2005 6:23 PM CST

Hello Everyone!
We got a call today and was told that the Dr. that does venograms was out sick so it will be on Wednesday. A hospital this big and only 1 Dr. that does venograms???

I had a really bad moment today and hung up on the Dr. . . . but not before I said I was sorry and then I slammed down the phone. For a whole week we have known that Zach's NB has progressed and now is in the marrow and new bone lessions. So, the oncologist is getting frustrated because Zach needs to start chemo ASAP because surgery nor radiation is an option right now. The Dr. that I talked to today - said that this will be a big surgery putting this line in . . . ok - so, get it in already - Zach needs to start chemo. What it sounds like is that I need to get home and go to church and get refueled with God's love, peace, joy all the fruits of the spirit. Day after day of this can really run someone out of . . . well, major attitude problem.

Thanks for everyone's prayers - can't wait to get home!!!!!! Missing Kylee and John and even Spanky :-) !!!! Love you guys!!!

Zach hasn't been feeling good and has been sleeping - he finally ate something - mini cinnamon buns (sp?) cereal. He's in the game room right now playing with his friend Jacob (he's next door to us at the RMH).

Nikki, Zach and Grandma

PS. Zach is really missing his friends. I bought that new dance pad and game to play on the PS2 for his friends to come over and hang out.

Monday, March 21, 2005 8:02 PM CST

Hello again! Well, we seen the Dr.s today - and now we are going to be here longer . . . we were ready to head home a week ago. Zach has to have another venogram - they believe they will be able to put the line in where the last one was removed (right groin area). It looks like the soonest he will have surgery is Friday. I'm very upset. The oncologist wanted to start chemo last Monday - but because Zach doesn't have a line and good veins - we have to wait until the line placement. I asked the Dr. to give him oral chemo until the line is placed and he said no because that will drop his counts down to 0 - unable for Zach to have surgery. Because Zach has had so much chemo - his counts bottom out really quick.

So, everyone pray that his line will be placed and the chemo started and the cancer will get under control. God is much BIGGER than this!

Thanks for everyone's support!! Zach is really missing his friends from GSLS and his family!!!

Nikki

Monday, March 21, 2005 11:55 AM CST

Hello Everyone! Thanks for all the messages and prayers!

We are getting ready to head over to the hospital to talk to the surgeons. We will find out where the central line will go.

Yesterday we had a really nice time hanging out with our neighbor across the hall - his name is Jacob and his mom Julie. We went to Target, played Laser tag (alot of fun) and went to eat at a Mexican restaraunt. Zach has been feeling pretty good. Last night they were giving free massages here at the RMH. Zach enjoyed one.

I'll update the site later on after talking to the Dr.s

Thanks again for everyones prayers!!!

Love,

Nikki, Zach and Grandma

Saturday, March 19, 2005 9:47 AM CST

They served Breakfast here this morning for everyone at 9:00 - Zach got up from bed like a zombie and walked down to the kitchen in what he slept in and I believe he still wasn't fully awake.

Last night we went shopping again, ate at Sonic's and Zach decided to go back to Sonic's today for lunch. He wished there was a Sonic's close to us back at home.

The venogram yesterday didn't turn out with the results that we wanted. I guess now they are looking into putting the double hickman directly to his inferior vena cava and it would come out his back. Zach is not looking forward to this at all - just pray that everything will go smoothly. This is the hardest decision a parent has to make and for the first time I am having a hard time. Beleiving for that peace that only God gives in my decision.

Thanks for everyone's prayers. We will talk to the surgeons on Monday to decide where the line will go and what treatment Zach is wanting. With all these complications - I'm trying to listen to hear what God is wanting us to do -

Missing you John and Kylee!! Love you both very much!

Again, thanks for everyone's prayers - the joy of the Lord is our Strength!

Nikki, Zach and Grandma

Thursday, March 17, 2005 6:21 PM CST

Hello everyone!

God is the one that gives us the strength to get up in the morning with smiles on our faces and ready to overcome whatever the enemy has ready for us. It's because of God - Zach still keeps up his fight - making Zachary into such a strong man of God -

Zach has been enjoying that last few days. We've been playing at Jillians, miniature golf (the one in the dark with black lights), and shopping. Zach has been DREAMING of the PSP - a new handheld game system. Yes, dreaming and reading his game magazine. So, I guess you know what the Easter Bunny is bringing him . . . or not . . . :-)

Zach is so strong and never complains about anything. I can tell he starts to hurt and gets worn out after walking for a while - but never a complaint. I know him and I know how Zachary is . . .

Zach goes in tomorrow for another venogram. Hopefully on Tuesday they can put in a double hickman in his left groin area. Pray that his veins are open and that will be successful. If that is not the case then surgery to put it directly to the heart. Then we will head home to start chemo - Irinotecan and Vincristine - in hopes to clean his marrow and harvest it in a few months to do the MIBG treatment. Then after that depends on what Zach wants and how his pulmonary functions are - using my marrow for his transplant might be an option. But, Zach is making the decisions - so it would be up to him. Just pray that everything will go good with no complications and we get the results!

Zach is missing home very much and he can't wait to head back!

Thanks for everyone's prayers and encouraging words! It's important to Zach that he has support from everyone - letting him know how brave and how loved he is. He's kind of depressed right now - but, being away from home can do that - just keep up the guestbook signings - he loves reading them!

Nikki, Zach, and grandma

Thursday, March 17, 2005 6:21 PM CST

Monday, March 14, 2005 11:31 AM CST

We got done early today! We just got back from the hospital and Zach is wanting to go shopping. It's awesome that he is feeling so good! Dr. Santana can't believe how he was hurting so bad and now - be pain free (I know why - God is awesome - even during times like this he never leaves us).

The pulmonary functions are not high enough to make Zach elgible for a 2nd transplant. One number increased by 4 percent and the other number was down by 4 percent. Last night when I was praying I just asked God that if the transplant was something that Zach was to do - then I would have a peace about it and the pulmonary functions would be high enough for Zachary to do it.

We talked to Dr. Santana this morning (a really good Dr. in Neuroblastom) - There is the protocol using Irinotecan (a Phase I study)that Zach qualifies for and the other option was the transplant/MIBG IF his pulmonary #'s went up and IF Zach had bone marrow stored - so, that option is out. Everything is narrowed down to the Irinotecan (sp?) - I go later to pick up the consent form to read over. One thing that I'm struggling with - having to make these kind of decisions. Zach is having a really hard time - he wants to just be normal and for all of this abnormal stuff to disappear. He really doesn't want to loose his hair - with having a girlfriend now he thinks he looks ugly without the hair. When Zach asked me a while back - mom what's it like to be normal your whole life? That was the first time I realized that my perspective on everything is so different - what goes through a child's mind when having to make these kind of decisions and feeling like everything is out of your control - Everything . . .

When Zach gets back home - he is planning a huge party. He is wanting to invite all his friends and just hang out. I can't wait to see his smile and laughing with all his friends! With a huge smile on his face he stated - there are going to be a lot of girls there too mom . . . boy how things change in just one year! He didn't even like girls a year ago . . .now he has a girlfriend

Thanks for everyone's prayers and signing the guestbook!!

Nikki, Zach and Grandma

Saturday, March 12, 2005 6:28 PM CST

Zach, my mom and I just got back to the RMH room - Volunteers made a really nice dinner for everyone. We all enjoyed it! There was an easter egg hunt earlier today that Zach enjoyed. I have some pictures that were really good of Zach being goofy. I'll have to spend some extra time getting them on here.

John and Kylee had fun today. John picked Kylee up at her Aunt Tomi's they went shopping and hung out with John's family. I thank God every day what an awesome man I have.

Earlier today the 3 of us went shopping. Zach got some new shoes and some cards. Zach was disappointed that the game he wanted for his gameboy sp doesn't come out till the end of this month.

I'm just believing that the right decision will be made - God will give me the peace and Zachary a peaceful heart for the right treatment choice. My son will always be my biggest hero. To endure so much and yet still making sure his mom has a smile on her face. When he was 7 yrs. old and going through his bone marrow transplant - Zach said mommy as long as you have a smile on your face - I know everything is ok. He still keeps a smile on my face! Of course these days, there are friends that I have to compete with . . . His friend Kris and his girlfriend Gabby. I'm so happy for him though. He has the biggest smile on his face as he speaks to either one of them - Only when he talks to Gabby I'm not allowed any where near him while he is on the phone - so I can usually figure out who he is talking to.

Thanks for everyone's prayers and the encouraging guestbook entries.

Nikki, Zach and Grandma (my mom)

Friday, March 11, 2005 3:32 PM CST

After the results I had to get away and just be by myself. While the Dr. was giving the results - all Zach had to hear there are more tumors and Zach put on his headset and turned it up full blast.

I had to listen to the Dr. say that there is a new bone lesion on his left rib area and new tumors in his spinal and chest areas. It felt like someone turned around and socked me as hard as they could and knocked the air right out of me.

Walking away with this news - the feeling of anger, helpless, and just asking what now God. This is not the news that I had expected - I was expecting for the Dr. to say - Zach is in remission - not realistic - a mother NEVER gives up hope - but my dreams for my son - cancer free and live a normal life - spontaneous remission. After all - Zach has had to endure 8 years of his life as a St. Jude patient - not really knowing and understanding the concept of a "Normal" life.

The Dr. gave this news and wants us to think about what kind of treatment next. Monday morning we sit with Dr. Santana and go over the options. Along with the results from the bone marrow biopsies and pulmonary tests. I asked for Dr. Hale to check the bone marrow donor bank again for possible matches for Zachary (believing that the pulmonary function test shows a BIG improvement & makes Zach elgible for a transplant) - Please pray - if that is God's will that there will be a complete match for Zachary found.

Please pray that the God gives me the wisdom that I need to make any decisions for the next treatment plan and pray that Zachary will comply with the next step.

Thanks for everyone's prayers! Also, Zach enjoys reading the guestbook entries - thanks!

Love you John and Kylee - MISSING you both!!!

Nikki, Zach and Grandma

Thursday, March 10, 2005 1:53 PM CST

Hey Everyone!

We had a LONG day yesterday - CT Scan, PET Scan and MRI- We checked into the RMH yesterday. Our room is #12 - Hey Marilyn - my mom found a journal in the room - you left a message in it from January 2004 - Today we got back to the room around 1:30. We are just getting ready to get some groceries - make sure it is during daylight - it's kind of scary at the Krogers by the RMH at dark - all the weirdo's are out. The story from our experience at the KFC drive through - last time we were here Zach had a craving for Chicken - I don't think we will ever have a craving for chicken bad enough to put ourselves through that!!!!

Well, Zach has been feeling REALLY good the past - almost week ! Wow, God is awesome! Just pray for really good reports!

Thanks everyone for your prayers - they sure are working! I have the peace only God gives & Patience - amazing!

Love you John - Love you Kylee - Missing YOU Guys!!! XOXO

Nikki, Zach and Grandma

Monday, March 7, 2005 11:33 AM CST

I thought today was the 8th - so, We will be leaving Tomorrow AM for a few weeks.

John's surgery went smoothly. He's sore - (gallbladder taken out).

Zach had a really nice weakend hanging out with his friends (no school on Thurs & Fri.)! Wonderful news - Zach's pain - hardly there - the last few days! He has been able to sleep and everything! He went to school today to pick up all the homework to work on while at St. Jude.

John will be taking care of Spanky while we are gone. I can't believe how fast time is going - only 6 more months before the wedding !!! So much to do!

I'll be updating with updates as we get them - Wednesday is Zach's PET scan & MRI - I think Friday is the MIBG scan - I don't know if other mom's that have kids fighting NB - the night before Zach's MIBG/bone scan I always have a nightmare of his whole body glowing on the screen - I always get worked up - I know God is always there for me - and is wanting to give me the peace if I just lean on him and let him in control of everything - So, that is what I will do . . . Lean on God - (MY DANCE)

Thanks for everyone's prayers and signing Zach's guestbook!

Nikki

Wednesday, March 2, 2005 8:24 AM CST

Hello Everyone!

Wow - busy weekend and the week just seems to by flying by. Zach has been feeling really good the last couple of days. It seems at night is when his chest and back really hurt - keeps him from sleeping. He has been going to school and hanging out with his friends. That is what really matters to him - hanging out . . . .

Sunday was John's birthday - and he would be upset if I posted what birthday it was. . . . . We all went out and had a lot of fun!!! Of course, Zach was at the end of the table on the phone the whole time . . . was he talking to his girlfriend? :-) :-) oops Zach - did I just mention what I think I did? I guess you are going to have to do your own updating?? (maybe this will get Zach to start journaling?) John will be having surgery on Friday - outpatient - it shouldn't be too bad - just pray that everything will go smoothly.

We are getting ready to head down to Memphis on Monday. TESTS, TESTS, and more TESTS. Pray that I will have patience - that is one of my weaknesses when I'm down there. Part of it has to do that I am anxious to get the results and just don't know what to do . . . Also, this is a big one - PRAY that Zach will be able to get an IV started with NO problems - Zach's veins are totally shot and getting an IV started is a very BIG deal - good thing Zach has a very high tolerance of pain because they poke and poke and well, Just pray that it will not happen this time! We will be there for about 3 weeks - I will post the results as I get them.

Thanks for everyone's encouraging words in the guestbook!! Also, thanks Michelle for the cards - Zach and Kylee get smiles on their faces when I tell them they've got mail!

A few prayer requests:
Anthony - that his blood counts recover and he can start his next treatment!

Chassity - she gets all better and back to home in her own bed!
Links to their websites are on the bottom!

Nikki

Saturday, February 26, 2005 10:13 PM CST

Just sitting awake thinking about everything & how thankful that God always has everything all planned out and knows exactly what I need to hear. . .

Someone called me today - and told me something that I really needed to hear. Thanks for listening to God!

See, Zachary has been telling me to just leave him alone - that he is done with treatment. For me - it registers in my mind that he is giving up. As a mom I'm willing to do whatever to make him all better - I'll try anything. I haven't been listening to Zachary - I've been trying to control everything - ME - ME controlling it - instead of listening to what God has to say and to what Zachary has to say. Talking to the Dr.s on Friday - They reminded me that Zachary is not your typical case - for Zachary to get his 7th or 8th central line - it would be a major surgery and it wouldn't be a sure thing - they can not make it a sure thing that they would even be successful to getting a line in for Zachary - and the chemos that Zachary has been on - he has tried ALL of them and nothing has done their job -

Zachary reminded me Friday on our way home - Mom my body can not take anything more - the chemo that I just was on - my body couldn't take it - his pulmonary functions are around 30damage from too much radiation) - which means that isn't even high enough to even be considered for another transplant - So, for me to love my son - I need to LISTEN to him - he knows his body best - he knows - ONLY he knows - For Zachary is not giving up - for he has the courage that I could only hope to have - COURAGE to go to school everyday even when he is not feeling good - and live life to the fullest - Zachary walks around with a smile on his face all the time - for Zachary is believing in a miracle - and Zachary has the POWER - only the power that God can give - to go out on the court and play basketball - even when he is on soo much pain meds and still hurting - even though his spinal cord is unstable and against his Dr's wishes - Zachary - you make me so proud to say - I'm Zach's momma - What an amazing son!!! How much you have taught me -

Thank you God for the most amazing kids!

Nikki

Friday, February 25, 2005 7:26 AM CST

I'm getting ready to take Zachary in to St. Jude. Last night he was in so much pain the pain meds wouldn't touch it. As a mom - there is something inside telling me that I really don't want to know what really is going on. I couldn't sleep last night. Right now I'm so frustrated at the Peoria St. Jude. I feel if Zach had a different Dr. that we wouldn't be here right now. I always feel that his Dr. gave up hope a long time ago - I had a hard time getting him to treat him this last time. I don't know what I should do right now.

My gut feeling is telling me to head down to Memphis and let Dr. Hale treat my Zachary - he never gives up hope. He always offers something to do -

I'm so frustrated - seeing Zach in bed all the time -

I really need to give all this to God - because right now he is the only one that will listen and will never give up -

Nikki

Tuesday, February 22, 2005 8:54 AM CST

Hello Everyone!

Zach had a fun weekend - he had Chris spend the night on Sunday and then yesterday they went to see Hitch and ate at Old Chicago (pizza). They were mad at me because they wanted to go to Hobby Town before coming home - but it was getting late and Zach still had homework to finish. If you haven't seen Hitch - it's a great movie!

I just got back from picking Zach up from school. He is feeling really bad - feeling sick to his stomach and dizzy. He never runs a fever - he just keeps having episodes where he just doesn't feel good and very tired. He went right to bed after taking some zofran and is already sleeping. He looks so peaceful curled up in bed.

Zach got some papers for summer camp already. He is really wanting to go and I want him to be able to do whatever makes him happy.

You should see Spanky - he is getting so big! At the vet last week he almost weighted 8 lbs. - he only was 2.3 lbs. when we got him. I took some pictures of Zach and Spanky and will post them soon. Spanky is always looking for Zach and wanting to sit on his lap and play with him. Of course, Spanky can always count on a treat from Zach - maybe that's why . . . . .

Thanks for everyone's prayers and encouraging words!

Nikki

Thursday, February 17, 2005 8:19 AM CST

Zach went to school today - He feels really good this morning. He didn't take his high dose immediate relief pain this morning - in hopes to be functioning better at school. Just pray that he doesn't get a headache and his back doesn't hurt.

He finished his inventor's project for school - he gets so overwhelmed so easily. There are concerns that both the teachers and I have about Zachary. He forgets everything and asks the same questions over and over and it just seems that things that he does do - it doesn't make sense. His teacher did say that his math is still really good. He's got a math brain - he got that from me :-) I know that I'm to give all my worries to God and that he already has them under control - it's something that I struggle with.

As long as my Zachary is feeling good - that is what makes me happy!!!

Thanks for everyone's encouragement to Zachary - he really does enjoy reading his guestbook entries! Also, thanks for your prayers!

Nikki

Monday, February 14, 2005 9:02 AM CST

Happy Valentines Day!!!

Zachary had a school dance on Friday. He even danced with - well, I know of one girl that he danced with - because that was the only one he told me about. He had fun with all of his friends.

I had a really nice Valentines with John yesterday. You should see the gift he got me - a heart diamond necklace - he knows exactly how to pick things out that I like. Of course I loved the card - He left this morning to Georgia - he stopped by before he left and brought me a chai tea - I love you John! !

Kylee and I had a nice time doing her cards for her party today. The first one she filled out was for a boy . . . that I hear sooooo much about.

All four of us went bowling on Saturday - that was the first time I noticed that Kylee is growing up. There were 2 boys next to us and the funny thing is I picked up on it right away and I was right to the one she thought was cute - then of course Zach and John had a blast giving her a hard time.

The plan is to leave for Memphis on March 8th for 2 weeks worth of testing & figuring out what the next step is in Zach's treatment.

Thanks for everyone's prayers and encouraging words in the guestbook! Zach maybe not journaling - but he still enjoys reading his guestbook. Zach is very backwards when it comes to communicating - part of the problem is that he grew up having a mom that speaks for him - I know him very well and can read his body language and I just know what is going on in that mind of his. He didn't start talking until he was like 2 1/2 yrs old and he talked perfect - he started talking in sentences. I need to learn to I guess "shut my mouth" :-)

Nikki

Friday, February 11, 2005 7:45 AM CST

Hello everyone!
We were on the radio yesterday for the St. Jude radiothon. Zach sounded like Darrell off of King of the Hill - yep - uhah - I teased him afterwards. He gets so shy sometimes. plus it is so fun to razz him up :-)

Zach is still not feeling good - he has been sleeping a whole lot - and feeling sick to his stomach - but he still went to school today - he missed yesterday. He never complains about it - it's starting to concern me - it has been a whole week that he has been feeling this way -

Zach and Kylee are going to grandma's tonight. John and I are going to celebrate Valentine's before he has to leave on Monday morning.

Thanks Aunt Mary Ann for the St. Jude donation - we were there when you called in :-) I can't think of a better place - St. Jude is wonderful.

Nikki

Wednesday, February 9, 2005 8:12 AM CST

Ok - who's sick of waiting for my lovely Zachary to update? He does have a good excuse - he missed school on Monday - and last night he told me that he went to school on Tuesday because he didn't want me worrying about him and that he still feels really sick - and he woke up not feeling any better. But, of course he didn't want to miss school again. He said that he HATES making up all that homework! I can tell he is just not feeling himself. He took alot of pain killers this morning before school and off he went - to his bus stop. He gave me strict instructions - DO NOT CALL THE DOCTOR - IT IS JUST A NORMAL KID THING THAT ALL KIDS GET - So mom . . . . just leave me alone! So, I guess - I'll make sure I have my cell phone and do some running around.

I got alot of things done for my wedding last week. I have my dress, photographer, DJ, and baker. Everything is coming together!

John is getting ready to leave again for a business trip on Valentines Day!! :-( He will be close to my Aunt Tammy and Uncle Gary - I'll have to ask him again exactly where the plant is that he will be working at.

Thanks for everyone's prayers and entries in the guestbook.

Nikki

Friday, February 4, 2005 2:25 PM CST

After talking to his Dr. - Zachary is going to Memphis the beginning of March to have 2 weeks worth of testing done - and if they can have a central line placed - he will get one. The Dr. can be so negative - I guess Dr.'s in general can be very negative - always giving the bad things that could happen - So he said "IF" it is possible for Zachary to have a line put in - Zachary has had 7 central lines - and now they are down to one last spot - the left groin area and they would just tunnel out through his abdomen - like the last one only on the opposite side. Zachary will begin getting Irinotecan here at the Peoria St. Jude. This way Zach will be able to keep going to school. It just depends what the results are - if they will be doing surgery first. The infection that Zachary had in September - complicated his treatments.

Well, the weekends here - I wonder what Zach will want to do???? I guess he will be letting you know what he is up to - - -

Thanks for everyone's prayers and entries in the guestbook!

Nikki

Thursday, February 3, 2005 8:03 AM CST

Ok - I thought I'd check the page to see what Zach updated - and now confused why he hasn't updated yet. I told him everyone's waiting for his side of the story.

Well, they won their game on Tuesday - against Bethel Lutheran School - YEAH RAMS! He was so happy. He actually got the ball - I was so happy that he was out there and able to play! He was out there for just a short time - but it seemed like forever - I get so nervous with him out there - if he falls we have to call 911 and not move him because of the unstable spine - and me being mom sometimes I can't even watch. I can feel my hair standing on end and it's like having nails down a chalkboard. But - those few moments are Zach's favorite.

I make sure that Zach updates this weekend.

Nikki

Monday, January 31, 2005 7:44 AM CST

Zachary told me that he was going to do the journaling for now on - but I noticed he hasn't done it yet. He changed the background back to the turtle - him and his grandpa Tom has a thing with turtles . . .

Well, I was so happy Zachary got his hair cut :-) He looks so handsome - he also got highlights put in it - I'll have to take a picture of his new du and post it.

Zachary is still doing good - the time released meds are working out great - with the combination of that and the immediate release - he is more like himself.

It's nice that John is back - he ended up getting Zachary a X-Box Friday night - or I believe the truth is John got himself the X-Box - because trying to pry him away from the thing is worse than Zach with his PS2 :-) Now when John comes over - I think the motives are . . . . just kidding - it's not that bad.?.?

Mom and I are going to look at wedding stuff. It gets kind of stressful - making sure that everything will be just right - I just can not get over how much everything costs.

Thanks for everyone's prayers and encouragement! I believe it's because of everyone's prayers that Zachary is starting this week off much better. There isn't anything worse than to have a child in so much pain and you can not do anything about it.

Nikki, Zach and Kylee

Friday, January 28, 2005 4:48 PM CST

Hello Everyone!

Wow - I can't believe it is already Friday. Zach's getting ready to have a guys night out with John - I'm so glad we have John in our lives - he truly in one of many blessings that God has sent our way. (John is getting home any minute now):-)!

Spanky is running around in the background - :-) When he gets worn out you can hear him snorting - it's so funny!

Zach is feeling much better and is back to his normal self - after getting all the meds back under control - He's back to being the comedian - Let me explain something about Zach - He's got ONE speed - EXTRA slow - He strolls - yes strolls - it's too slow to be called a walk - and it's like he has not a care in the world - there is one thing that he is fast with and that is his mouth with smart come backs - that's the only thing that he is fast with and he is soooo funny - I believe he is going to be a comedian in his future - His Dr. always regrets when he asks Zach so, when did the pain start . . . . . he is just asking for a 3 hr. story to be told - - - the Dr. always sits down to listen because he knows it's going to be a LONG explanation - - - Zach tells EVERY detail

Thanks for everyone's prayers and encouragment!

Nikki, Zach and Kylee

Tuesday, January 25, 2005 10:18 PM CST

Well - we just got home from a very hectic day . . .

Zach's school called today and stated that Zachary was in the office and is hurting really bad - he just wanted to take a few Tylenol and go back to class (like that is going to work . . .!) so, Zach went back to class. I called to talk to the teacher and she said that Zach isn't moving alot and has her really concerned. So, the Dr. said that Zach had to be seen by the Dr. today - he didn't have any strong pain killers left. We were at St. Jude for a few hours - Zach reminded the Dr. that we had to hurry because tonight is the last home game - The Dr. quickly questioned Zach - you're playing - YES -

The whole time Zach was out there you could tell that he was in extreme pain - but Zach being Zach - he stayed out there - until I could see a drastic change in him - his teacher quickly got the coach to make him get out of the game - It was the last home game - and I know all he wanted was to be able to be out there - as he sat on the side I could see tears coming down - I just want to be able to take all the pain away - kiss it and make it all better

The Dr. - nurses were able to have a small talk with him - the conclusion is Zach is scared and knows that something is going on - but is in denial - he feels if he is not at the hospital and is not talking about being or feeling sick - then everything is normal - I just want in the worst way for everything to be normal for him - I think tonight was the first time in a while that I'm realizing that Zachary is still sick and that I need to appreciate every moment that Zach has being a kid - doing things that other kids do his age - in a moment it could change -

Thanks for everyone's prayers and guestbook entries!

Nikki, Zach and Kylee

Monday, January 24, 2005 10:56 AM CST

Well . . . Finally an update .. . . .

Zachary will be on the local St. Jude radiothon on Feb. 10 at 8:30. I'm thinking that it will probably be me talking - he hates to talk - on the phone - on the computer - anything - he has really been keeping to himself lately. I don't know if its just the teenager thing or if something is really bothering him and is not letting anyone know what is. He told me that he is no longer telling me anything health related to him - he is no longer going to the Dr's and no one is touching him anymore . . . it is so hard when he is this old - and looks at everything differently - I try to understand him and realize what he has seen - what he has experienced - realizing that he is so longing to be normal - he doesn't want attention from people because he is sick - he doesn't want people to baby him - he just wants to "mix in" with the rest of the kids his age. He hates to stand out - he doesn't like going to the Dr's and spending all that time with other sick kids - he is trying his hardest to escape from it all - he is closing himself off - and I'm at a loss - I'm not too sure how to get on his level - I just continue to pray and ask God to help me to connect with my son . . . a connection that we once had . . .

Spanky - he is learning tricks now - very very smart - that is one thing Zach is starting to spend time doing - socializing with the dog -

Weddings . . . they can be very stressful - getting engaged was the most amazing experience - now that the excitement has worn off - I'm beginning to feel a strain - planning - making sure everything will be perfect - now I just can not wait until the honeymoon - relax time -

Last week was report cards - Zachary is used to getting really good grades - the pain and their meds have really impacted Zach's performance - all B's and 2 C's - he is really not showing any interest in ANYTHING - this is not my Zachary - His sister has a tutor and is working on bringing up her grades - Neuroblastoma doesn't affect JUST the victim - it affects the whole family - Kylee was just 2 yrs. old when it all started - she will be 10 in April -

John left for a business trip this morning to Minn. and will be returning this weekend. He is always missed when he is gone -

I know that God is always there and will continue to love on us and watch over us -

Nikki, Zach and Kylee

Monday, January 17, 2005 10:11 PM CST

Hello Everyone!
We are enjoying our family time that we have been having! Tonight we took my dad - Zach & Kylee's grandpa out to dinner for his Birthday (Chili's) and of course grandma came with :-).

You should see how big Spanky is getting - and better behaved. He has learned not to play bite people and their hands - such a BIG improvement!!! His little sharp teeth - well now he doesn't even try - he waits for you to get a toy out. He has a toy box - FILLED with toys that Zach has recieved through the mail and of course his own shopping - and Spanky LOVES to play with his toys! Very Very Spoiled. He stands in front of his toy box and waits for you to get a toy out to play with him - very cute. He's part of the family.

Zachary - - - he's been doing good. He has noticed a difference in his hearing this last week (even more than before) and has been taking more pain meds. It has me a little concerned - but then I know that the Devil trys to come and take our joy and put our eyes on things like that - than to just put our eyes on God and remember who is in control. Zach has tests scheduled to start on March 8th for 2 weeks in Memphis. So, pray and believe that Zachary is healed and that he no longer has Neuroblastoma - Miracles do happen! That would be an awesome message for Zachary - to share how God is alive and still performs miracles.

One thing is true - I am learning how to appreciate every minute that I have with my family - only God knows the plan

Thanks for everyone's prayers and entries in the guestbook.

Nikki, John, Zach and Kylee

Monday, January 10, 2005 7:38 PM CST

Hello Everyone!

Well, the big day is August 27th! It's final - I have the church and the place where the reception is going to be held. After alot of searching - I'm soo happy with the plans and how everything is going now - it is going to be sooo nice. Now for the fun details.

St. Jude called today - it looks like we are going to be there for a couple weeks in March. Zachary will have several scans and other tests and then see an orthopedic surgeon and neurosurgeon. So, we are believeing that everything is going to be clean and he will be able to have surgery done to stabalize the spine.

Zach has been feeling really good - and he's looking good. His hair is getting long and curly! He's never had curly hair before. I hate long hair on boys!! Right now if he wants to grow it out - I completely understand why he would want to. I used to have his hair cut every 2 wks. now . . . I'm just glad he has hair. Tuesday night Zach will be playing for his basketball team - an away game in Bloomington - he's so excited and I just thank God for every moment he has that is "Normal". You have no idea what that means to Zach - I can tell his spirit just is in awe in those moments of being out there with his friends that he has had since preschool - he gets to enjoy the same things as they are - God is such an amazing God

Thanks for everyone's thoughts and prayers! We love to read the guestbook - Zach has it set as his homepage.

Love,
Nikki, John, Zach and Kylee

Friday, January 7, 2005 7:07 PM CST

I know . . . Finally I'm updating - - - It's kind of nice to pretend for a while that everyone is healthy and has a normal life . . . NEW PICTURES IN VIEW PHOTOS!

It's just when we don't have to go to Dr.s appointments and the pain meds are working and Zach looks really good - it's very easy to just go on living everyday normal lives and not have to think about what really is going on -

Also, I've been busy planning - a wedding can be very stressful - trying to figure out where the reception is the problem right now. I believe the date is September 3, 2005.

Well, how is Zachary doing? He is feeling great! His pain is minimal and his pain meds are taking care of it. He looks great and is growing his hair! His hair is beginning to have a wave in it - and is very very soft! It's like petting a little pug puppy :-)

Spanky is the best little puppy - he is very well behaved. Everyone is enjoying having him around. Only the taking turns to take him potty - everyone's response . . . I just took him out and it's not my turn :-0 it's kind of funny how all of a sudden it's nobody's turn . . . how it always seems to be mom's turn.

Thanks to everyone for making our Christmas very special and Spanky's!! It was a Christmas we will never forget!!

Love,
John, Nikki, Zachary and Kylee

Tuesday, December 28, 2004 4:06 PM CST

Oops - sorry for such a long time before updating. There is a reason why - The news I have is soo good that I had to wait and tell everyone myself before posting it on the website.

Our Dreams DID COME TRUE this Christmas. John asked me to Marry him - so still on cloud 9. :-0

So, sometime this year - maybe August - everyone is soo excited. The kids will have a dad that is a kind a dad they deserve :-) I was speechless when he proposed. The ring is beautiful!! I also got a diamond necklace and bracelet. We were all spoiled this Christmas.

Zach even said that this was his favorite Christmas ever! Kylee agrees - she loves John - we all LOVE John very much and couldn't imagine what our lives would be like without him.

I'll post the pictures either tonight or in the morning.

Thanks for everyone's encouragement!!

Nikki, Zach and Kylee

Tuesday, December 21, 2004 11:04 AM CST

I can't believe it . . . only 4 more days -

I think this year I'm more excited than my children - this year we have a man in our lives that is an answer to each of our prayers - he's my best friend and the best role model for my children - we have so many things to be thankful for - but this year, is just going to be extra special.

First, the first Gift of Christmas - and it's free - God's gift - His Son - that we will live eternally with him in heaven - a place where our superhero Aaron is already enjoying his first Christmas with Jesus completely healed - A gift for anyone that wants it - you can either open the gift and use it for all it is - or you can throw it away and never experience what God has to offer

Second, my family with our new addition - Spanky. Zach had been wanting a pug puppy for so long -

Zachary had a good day yesterday after getting out of bed (I think it was ohhh Noon time) and today he's feeling really good. Zach and my nephew Tanner decided they wanted CoCoa Wheats this morning - Tanner explained to me why he liked them and why it's the best breakfast - see aunt Nikki they got chocolate in them - mmmmmm - it's the best breakfast and then you just dunk your toast in it - it's soo good - he's only 4 yr. and I get to watch him 2 days this week - well, we are headed out the door - they are going to go watch the Spongebob Movie-

Thank you everyone for you guestbook entries, prayers and your mail. Our favorite card came from Chassity - she made it herself. Zach put it on the top of our card holder - Thanks Chass!

Have a Very Happy Holdiday!!

Nikki Zach and Kylee

Thursday, December 16, 2004 9:30 AM CST

Hello everyone and thank you so much for the support. Zach and I love to read the guestbook entries - especially times like this.

Zachary's shoulder is feeling better today. The Dr. increased his pain meds - Zach is feeling better that is all that matters. He is so amazing - today he woke up and said mom my head hurts so bad that I can't even comb my hair - to move my hair it hurts - I guess I'll have to go to school with it the way it is - No matter what is going on with him - all the normal things he can do - he does them and with no complaints and with a huge smile on his face. Zach never complains and keeps everything inside - I'm left in the dark until it's something that scares him what's going on and then he tells me - the Dr. said that is normal with a child that is approaching the teenage years and that has been sick for so long - they like to control everything they can -

John and I wrapped most of the presents last night and put them under the tree - the kids faces this morning . . . . . they asked mom - can we just open one present tonight ?? just one . . . NOPE not until Christmas morning! John and I had so much fun wrapping them - - -

Also, Zach would like to say thanks to Jess and Jeff for his package he received yesterday - he put the presents under the tree . . . and waiting

The pug's name is Spanky - and he is just the best puppy ever - no accidents in his crate and has the best personality - pictures will be posted soon - everything is just so busy

With everything that is going on - God still has his way of giving strength and peace to this family - at least when I allow God to give me his blessings - lately I've been trying to control everything - sometimes if I would just let go and let God do his thing my mind would be much better . . .

Keep praying for Marilyn (Aaron's mom) and his brothers - I'm sure they are missing him very much - along with everyone else -

Nikki, Zach and Kylee

Sunday, December 12, 2004 8:21 AM CST

Aaron's visitation and funeral is set for next week. We are hurting for Marilyn, his dad, his grandma and brothers. We learned so much from Aaron in his short life . . . he tried to teach Zach a few things and got angry with him when he didn't listen - it was sooo funny and if you listened to Aaron tell about his memories from the Disney trip just a few weeks ago - he told everyone how Zach didn't listen :-). I am happy for Aaron though - even though it's so hard not having him here - he is in the most beautiful spot - there are no words to explain it - God is so awesome - how he sent his son to die for us and be able to live with him eternally - a PERFECT eternal life.

The Zach man - he's been having pain and by last night the pain meds were doing nothing for him - his Dr. increased the meds and Zach finally went to sleep. He's unable to use his left arm - shoulder and arm pain. Through all of this Zach doesn't complain - just grouchy . . .

Last night Zachary got a Christmas gift - John and I picked up a pug puppy from a breeder that wanted to bless Zachary and gave us the puppy. What an amazing gift from God! No accidents and the puppy is just the cutest. I will post pictures soon of Zach and the puppy. Zach I believe he has named it Spanky - not too sure - Sparky or Spanky. We gave it to him early because the breeder said that pug's can be a one person dog and if John took it home until Christmas the puppy might get attached to him. So, an early Christmas gift was given. Thank you so much to the family that gave us the puppy - you have no idea what this means to this family.

Prayer Requests
Pray for Aaron's family and pray for Zachary to be pain free -

God is such an amazing God - even though we have struggles -he sends blessings our way

Thanks for everyone's support!

Nikki, Zach and Kylee

Friday, December 10, 2004 8:38 AM CST

Zach's friend - Aaron . . . our Superhero earned his wings this morning. No more Neuroblastoma - he is now completely healed.

Send some encouraging words to his mom and brothers -

Today is the 3rd Annual Aaron Hunter Cuddle Compassion day -everyone is wearing pj's to remember Aaron -

On our trip at Disney - Aaron was always cuddling - his mom got him a big stuffed animal - King Loui from Jungle Book - he was either cuddling with him or his mom or Disney characters - It was kinda funny - as soon as he seen a character he would get this huge smile on his face - his cuddle face - and would start loving on all the characters - Aaron will always be remembered -

Just think - Aaron is walking the streets of gold -

Nikki, Zach and Kylee

Wednesday, December 8, 2004 8:29 PM CST

First - you should have seen Zach last night - I had the biggest smile on my face as I watched my son playing his favorite sport - Basketball - GO RAMS GO! He was one of the starters! My smile was so big and then I had to quickly leave the building and sit out in the van - while I had tears of joy. I was so proud of him and I can not explain the feelings that came over me. The referee approved his new brace and let him play - and his Dr. said that he will not be able to - Zach loves to prove his Dr. wrong - if you knew Dr. McCallister you would know why :-) God is so good - he always knows our heart desires.

Zach's getting ready for his dance on Friday. I may be able to sneak a few pictures in there :-o!

Zach's pain meds have been keeping him comfortable - so no complaints here. . .

All this good stuff happening with Zach - but his friend Aaron is not. God knows his heart desires and will soon give him what he wants - he is going to be 100 percent restored - either here or in heaven - God has a plan and in the end - Aaron is going to be healed. Thinking about Aaron running around without any pain makes me smile and cry - but so happy for him. I had so much fun spending time with Aaron and his mom - Aaron has such an awesome spirit - you fall in love with him right away. He always puts a smile on your face. So please, keep Aaron and his family in your prayers.

Thanks for all your support!

Nikki, Zachary and Kylee

Monday, December 6, 2004 11:33 PM CST

Hello everyone! Everything with Zachary is going really well. On one of my recent updates - I put in there that Zach was not able to play his most favorite sport - basketball. He's been going to all of the practices he can make for his school team (GSLS RAMS) and was anticipating playing for the team. Well, when he got there the referee told the coach that Zach could not play. Due to the fact that Zach has to wear this metal brace for his spine and he was afraid of him getting hurt or others getting hurt. We got a new brace and I'm in the process of getting a new jersey for him. I want him to be the best dressed one out there - well, if he can't be the best player - he can be the cutest and the best dressed. Well, anyway - hopefully for tomorrow night's game Zach will be able to play. So, everyone just pray that the referee will allow Zach to play. It was so hard for me to see Zach cry - He was screaming at me in the van - Mom - it's my most favorite sport and I can't even play it - my heart is always hurting for him - but this time - I didn't even know where to begin. He was only 4 yrs. old when this whole nightmare started - is there ever going to be an end - is my son ever going to be able to have one "normal" thing in his lifetime?

Well, this Friday is Zach's first school dance. I'm so excited for him. I'm like I'll go pick out the most beautiful corsage for her and I'll pick out a real nice outfit for ya - I'll take pictures . . . this whole time I'm getting all excited - and he put a stop to it all - just like that. It's like someone cut the oxygen off - just like that . . He said ohhh no no no no - It's not going to be like that - I'm not taking her out to dinner, I'm not dressing up and I just want to be dropped off at the school that's it. My son is growing up and I'm not too sure where that puts me . . . . out of the picture ?? !! ??

Well, my little superhero - Aaron - is still in need of everyone's prayers. (his webpage is at the bottom)

When you are a parent with a child that has a terminal illness - especially now when the Drs are telling me that I need to make each moment special with Zach - Holidays like the one that is coming up - Christmas - I make it a Holiday that no one will ever forget - - - I'm getting so excited - I can not wait for everyone's faces - there are so many surprises this Christmas - - -

Thanks for everyone's support!

We are missing John - he's still in Georgia for work - we can't wait till he gets home! Pray for his work to be finished early and for a safe travel home.

Nikki, Zach and Kylee

Thursday, December 2, 2004 9:42 PM CST

First I would like to say thanks to Zach's angel's Heather & Michelle. Zachary got his packages today and yesterday and he had a blast. Heather's he opened and will be sporting around his Navy shirt & bracelet tomorrow at school and Michelle's he put them under the Christmas tree. Only he had us each open one tonight before we went to bed. Kylee's eyes twinkled - she got make-up and Zach - well, he went to spray on some good smelling stuff and he shot himself in the eye - he was screaming . . . It stings and I kiddingly replied it stinks . . . what? We were all rolling around on the floor tackeling each other before it was over and was laughing and having a good time. Those are the times I'll never take for granted.

Zachary's friend Aaron in the picture - well, he isn't doing so well and my heart is hurting so bad right now for their entire family - his mom - his brothers - Aaron . . . . please put them in your prayer - - - -God make Aaron all better - I know that is a promise - Jesus died on the cross so that each of us will be healed - sometimes that means that it is in heaven - it's just something that is hard for everyone here on earth - Aaron's website is at the bottom of the page - just leave them a note to let them know you are praying for them -

Zachary has a break of everything that deals with the medical field until after Christmas - what an awesome break. He's been doing good - he has been having to take more pain killers the last few days than usual - but it's all under control. I think we are going to try and do a little vacation - not too sure.

Missing John and BELIEVING IN BIG MIRACLES - !!! Aaron, yes I'm still believing for a miracle - either way you are going to be 100 PERCENT healed !!

Nikki, Zach and Kylee

Tuesday, November 30, 2004 3:57 PM CST

Hello everyone! Thanks for everyone's support - I can't tell you how much it means to have people bless my son that I don't even know - it is truly a blessing to the whole family.

Zach's check-up went fine - his blood counts and everything is really good. The Dr. said that after Christmas we will be going to St. Jude in Memphis for scans and stuff. I'm praying that the Dr.s will be amazed - Zach will be able to have the surgery for his spine to stabilize it. - God will restore my baby 100 percent! Wouldn't that be an amazing testimony - - - The odds of beating relapsed neuroblastoma (4th relapse) according to the Dr. it's not possible - - - My God is bigger than that - - -

Zach has been having pain in his back the last couple of days - having to take strong pain killers - but I'm believing that it is just because he has been active - not because of the cancer. He was upset last night - he's not able to participate in his school's basketball games - I'm going to get a special made jersey for him - so that it would cover his brace and he won't feel out of place - he can sit on the side with his team. He will look so handsome in it. (he's handsome in anything :-)

He makes me so proud!

We sneaked into Aaron's room this afternoon - both him and his mom were sleeping - they looked so cute & peaceful :-)

Believing in Miracles!

Nikki, Zach and Kylee

John left today for Georgia (for work) - so pray for a safe return SOON :-) already missing him!

Sunday, November 28, 2004 7:16 PM CST

UPDATE - MY DSL IS FIXED - YEAH!

Well, I'm at John's updating the page. Hopefully my DSL will be fixed tomorrow - Now I know how much I use the internet now that I don't have it.

Zach is doing wonderful! He had a wonderful surprise in the mail yesterday. Thanks to Michelle - he had the biggest smile on his face. He gets to go to a LA Lakers game. We plan on taking a bus to Chicago and go that route - that way I don't have to worry about driving and getting around by myself. I can't tell you how nice it is to see my son so happy! I thank God for all the blessings he gives us. This Christmas is going to be a Christmas we'll never forget - I can't wait - thanks to some very giving people - it's definitely a God Thang!

After getting back from Disney our Friend Aaron didn't get very good news. Right now he is in the hospital and needs lots of prayers - both him and his family. His website is www.caringbridge.org/il/aarondhunter. Please leave him an encouraging message - they need encouragment. I really have grown to love both him and his mom and I hate to see them go through a hard time.

Well, we are suppose to go to St. Jude on Tuesday to get a check up. I'll update after that.

Believing in Miracles! Also, thanks to everyone for all the support and encouraging words!

Nikki, Zach and Kylee

Thursday, November 25, 2004 7:51 PM CST

Hello Everyone - we are back from Disney and we had a blast!!

When I got home I went to update the web page and our internet was down - I have an appointment for Monday for them to come and check out the DSL connection - so there will be a delay in reading and updating until then - sorry.

As soon as it gets back to running properly I will be sending notes to everyone that has been signing the guest book and asking questions - sorry.

It was so nice to get to know Marilyn and Aaron better - Aaron is such a cutie - sometimes it's like he's a 30 year old in a 6 yr. old body! The things he said - Zach and I had a wonderful time.

We did so much while we were there!!

Aaron's Favorite - swimming
Zach's Favorite - MIB ride at Universal Studios
My Favorite - seeing smiles on the boys faces and the new Philharmagic 3D show at Magic Kingdom
Maryilyn's Favorite - of course seeing smiles on Aaron's face & I believe she said either the Spiderman ride or the MIB ride both at Universal Studios

So - we were suppose to go to St. Jude on Tuesday - but then Zach wanted to go to school - So Wednesday we were suppose to go - but Zach wanted to go to school - It was grandparents day - so I guess this coming up Tuesday we will be going. He is suppose to be getting an MRI done of his head - symptoms that Zach has been having - so I just feel if Zach feels like going to school - he should be able to do what he feels like doing.

We are having a wonderful Thanksgiving and I can hear everyone right now having fun!

I'll update with pictures - I believe tomorrow - I will go to John's and use his Cable connection - much faster than this dial up connection here in the country at my parents.

Thanks for all the support!! Believing for a miracle!

Nikki, Zach and Kylee

Saturday, November 13, 2004 9:00 AM CST

Well, we're getting ready to head to Disney!! We can not wait! Monday morning we are picking Aaron and Marilyn up and heading over to the Bloomington Airport - 2 hr. & 15 min. later we will be in Orlando!

I don't know if it's the boys or the moms that are more excited :-). FANTASY LAND . . . . for 8 WHOLE DAYS - - -

Zach's taking his laptop so I'll be able to update the web page and I bought a new camera - so the pictures of all of us in Disney will be on the page - Between Marilyn and I - picture overload :-0 -

Everyday there is something special planned - eating with characters - watching the La Nouba at Downtown Disney (French Circus) - Universal Studios - special Seating for the Fireworks & Parades - just so excited.

Missing John - - - wishing he would be going

Thanking God for all his blessings . . . .

Nikki, Zach and Kylee

Tuesday, November 9, 2004 12:16 AM CST

Well - If you go to View Photos the picture with Zach and Bambi are there - only the pic is huge and I'm not sure how John fixed that problem. He found out yesterday that he will be returning from Maine on the 19th and Zach & I will be returing from Disney on the 22nd. Can't wait for Thanksgiving - we'll all be home and able to have family time together.

I'm looking forward to living in fantasy land for 8 whole days - I realize it's not a permenant fix of what is going on - but to be able to be there with Zach - we've made so many memories there at Disney. I've been looking over the pictures of our past trips - smiles - I just can't wait! It really is like you are in Fantasy Land and everything is perfect for the whole time you are there.

Zach went to school today. He's been feeling good. He's been very grouchy lately - I hope that is just a temporary thing - only I've been told by parents that have teenagers that it is something that will be around for awhile :-). It just doesn't seem like normal Zachary - maybe he's growing up - and I don't want to let go . . . he is my baby.

Well - I'm going to try and fix the picture and I'll be busy getting things ready to leave on Monday.

Thanks for all the support and prayers!!!!

Nikki, Zach and Kylee

Monday, November 8, 2004 9:11 AM CST

Well, Zach and John got home last night. YEA!!!! It's much better now that they are back. Of course John leaves tomorrow morning for Maine :-( - very missed.

Zach ended up getting 3 deer (1 4pt. buck). I'll post the pictures soon - they are still on John's camera. Zach was so excited and I got to hear all about it - how exciting - they must of mistaken that I wanted to know all the details :-) - how Zach degutted and etc. We are getting an awesome deal on getting the meat processed - I just want to thank my brother Tim and my brother in-law Don for going down there to pick up the deer and thanks to my brother's neighbor for helping with the cost! THANKS VERY MUCH

It's Marilyn's 30th Birthday!!!! (Aaron's mom)

Well, Zach, Aaron, Marilyn and I leave next Monday to Florida. We're excited - I'm sure Aaron and Marilyn will be after they get back from the funeral - it takes a toll on ones self when going to support another family during a time like that - when you are a mom with a child that is sick - It's very nice for them to support their friends -

Zach's doing great - can be very grouchy . . . John said he slept good - they would be in the blind and Zach would be snoring away - his brace makes for a good rest for his head to be able to sleep while sitting :-)

When we get back from Disney Zach will go back to St. Jude to see what is going on and to see if there is a phase 1 study that wouldn't be too harsh but would also do some good. We're still believing in a miracle. Right now God is our hope in getting rid of this disease.

Thanks for everyone's support!!

Nikki, Zach and Kylee

Thursday, November 4, 2004 12:09 AM CST

UPDATE: Zach shot a deer tonight! He is soooo excited! OOH that means I will have a deer head sticking out of one of my walls - I get goose bumps just thinking about it - I can see it now - out of the corner of my eye and scream on the top of my lungs - They are going hunting again tomorrow in hopes to get another one. . . . . . like we need more than 1 ?? ?? ?? men . . . . . . ? What is it with them and wanting to share the dead animal that they caught . . . . . . . . .?

John flew in last night from Georgia. None of us like that John is always traveling for work - when they get back John has to leave for Maine :-(. Both Zach and John just left to go Deer Hunting. They both are so excited - watch out for the two of them - get those two together - all I can say is I'm glad I'm home spending time with Kylee :-). Kylee is very happy we are having time together - just the two of us this weekend. I separated all of Zach's meds. in baggies - marked the day/time on each - dummy proof just for John :-). (hopefully John don't read this)

Anyway - today I'm getting all the plans for Disney together. I hate to have to make plans - we're on vacation - you're not suppose to have a schedule. But, when you go to Disney - it's better to have things lined up just in case of crowds - it's not like everything is set in stone. So, Marilyn and Aaron when I hand you the itinerary . . . . . . . . . it's not set in stone :-) It's all about getting excited before you go - I can't wait - I'm a BIG DISNEY NUT - I'm sure you'll be telling me to shut up - I'll try to contain myself :-). I don't want to be getting on anyones nerves.

Well, how is Zach doing??????? Great! He's been grouchy and not able to sleep at night - but other than that he's been feeling good. The whole wearing the brace issue - it's a sore subject in this house. The Doc says if Zach wants to keep his head attached to his body then the brace has to be worn. So, there's no not wearing the brace. Easier said than done. Sounds simple . . . . . . .

Zach's just been taking the time released pain med. and that has been taking care of the pain. Zach's been going to school and 3 nights a week attending basketball practice (hanging out with his buds). The Dr. says to let him do whatever he feels like doing - as long as he wears his brace. Able to have a normal schedule - it's very nice to be one of the mom's picking up your son from practice. The first night I was in the van crying - because I was so happy to be able to sit outside waiting for Zach to be finished with practice like all the other moms. You take those kind of things for granted until - you don't have it any more or someone tells you that there will be an end to it all. I'm believing that God will keep letting those joyous times happen.

Well, if Zach gets a Deer I will post the PIC. I told Zach if he gets a deer we can have the head mounted. His comment - like you would want to hang it in the house - too tacky - He knows me too well! I told him if he gets a deer - the head can be hung in his room - it's already decked out in fishing/hunting stuff anyway. It would go perfect with one of the deer pics. in there.

Thanks for everyones support!

Nikki, Zach and Kylee

Tuesday, November 2, 2004 7:34 PM CST

We've got several things to be thankful for!!!!

Yesterday Zach was invited to attend a Deer Hunt this Weekend. A very generous lady has taken it upon herself to grant dreams to young children that want to go hunting or fishing. Zach has been wanting to go hunt Deer for some time now and has not been able to. Well, this weekend he is going with John down to Southern Illinois to go deer hunting. He is so excited! There was an entry in his guestbook by a lady wanting to know his favorite cookie - but didn't leave an e-mail address. His favorite cookie is snickerdoodle (sp?) with milk :-)! It's very nice to see a huge smile on Zach's face and a boost in his spirit. THANK YOU TO EVERYONE THAT IS MAKING IT POSSIBLE!!!

Also, something else really BIG . . . . . Zach and I along with another mom and her son Aaron - the 4 of us are heading down to sunny Florida - DISNEY here we come!!!! Aaron's webpage is www.caringbridge.org/il/aarondhunter. They both are fighting NB and have been told the same thing. It's nice to be able to talk with another mom and I'm sure Zach feels the same way with Aaron. We cannot wait - I went shopping today and we are going to look like the Incredibles getting on the plane to head down there on November 15th. Yesterday was a big day of planning some fun!

Keeping busy is helping to deal with everything that is going on.

Still believing for that miracle!!!

Nikki, Zach and Kylee

Sunday, October 31, 2004 1:03 PM CST

Everything is going very good. Aunt Tomi, Uncle Brian, Cousins Ali and Chase, Zach, Kylee, Zach's friend Kris and I attended a Riverman Hockey Game last night - very fun but they lost 2/1 - it went into overtime and they ended up loosing. At one point Zach stood up in a corner by the railing (he was getting uncomfortable) and everyone at the same time yelled at him to sit down - Zach didn't stand up again until the game was over. He is so funny about getting attention in ANY way - he was ready to cry. I felt so bad - it's not like he goes to hockey games all the time and knows all the rules :-).

I feel like I should share about Zach and why I hold on to the fact that God can do anything (for anyone that doesn't know the scoop).

By December 1999 Zach was finally in remission after relapsing twice. To get him in NED status he had 7 or 8 chemos, had radiation, autologous bone marrow transplant, 3 surgeries to remove tumor, experimental therapies and gene therapy. In January 2000 Zachary had found a lump in his neck. We flew to Memphis to St. Judes and there we were told that Zach had relapsed for the 3rd time and that they could try slowing everything down by taking oral vp16 and have as much radiation that he could get and take high doses of pain killers. One of the tumors was around his wind pipe and was cutting off his oxygen. Zach's pain killers started to increase all the time and by June 2000 - Zach was no longer normal Zach. Then by August Zach woke up one day and said mommy I aint taking those pain killers any more. God doesn't want me to die. Zach had just turned 8 yrs. old on August 1st and he meant what he said. He quit taking those pain killers - by Sept. I begged the Dr. to scan my son because I said we could be worrying about something that isn't even there any more. I could tell a difference. He was like my Zach before all this started happening - his eyes - had that twinkle back. When those results came back the Dr. said well . . . . they're gone. The tumors are GONE. The bone scan came back clear, the bone marrow came back clear - my son was completely healed. For 3 years we had an amazing time together.

I'm holding on to that - that God can do anything. That just doesn't happen - We are going to spend more amazing time together. He talks about how he's going to drive and date these girls - he is starting to like girls now - it's so funny. I picked up the other day that he liked this girl and I asked him about her - he just had a grin that covered his face and said . . . What? That is such a man response :-).

When Zach relapsed for the 4th time - it's the enemy trying to steal, kill and to destroy this family. God has great plans for us and we are holding on to that!

Thanks for everyone's support.

Nikki, Zach and Kylee

Wednesday, October 27, 2004 3:56 PM CDT

Hello Everyone!

Did you see the Journal Star from today? Zach is in the paper (one is with pastor Mike - nice picture pastor Mike!) - Thanks Pam and Fred you both did an awesome job!

After talking with Dr. McCallister - we've decided that Zach needs at least a couple week break from everything and let him attend school and do every day normal things. So, the praise report is this: YEAH - Zach gets to be a normal kid.

The Dr.s feel that doing the surgery would not be beneficial for Zachary - as they see it in the world of science - it's too much for Zachary and he really wouldn't benefit from it because after taking out the tumors and stabilizing him - there isn't a treatment for Zachary - so the tumors would just come right back and there would be no benefits for Zachary.
The praise report would be: Won't it be amazing when he gets the next scans and the tumors would be gone without any kind of surgery or treatment - what kind of message would that give????? Yes, Zach would have an amazing message to tell everyone - how God is the healer!

So, did the talk with the Dr. bother me - it did . . . it is hard to be told that your son can not be fixed. That there is no other treatment that will make Zach all better. Then I realize well, maybe with your drugs and medical treatments, but with my God - anything is possible. Yes, I do have feelings and yes the hopeless feeling does come over me - then that hug that God gives me with peace and comfort to let me know that it's all under control with God - he's got it all under control.

Zach is having a great week - he's having his best friend Kris stay over on Friday . . . .they will have an awesome time!

We're all missing John - he won't be home for another 3 weeks :-(.

Thanks for your support!

Nikki, Zach and Kylee

Sunday, October 24, 2004 2:43 PM CDT

Well, after praying about everything and going to church this mornig - I've been reminded of several things - How God never leaves you and how if you put all your trust in Him and make him Lord of your life then he will make everything ok.

The decision is this- go to Memphis to have the surgery done - have his spine stabilized and whatever tumors removed while they have Zach open for the surgery.

I don't have a peace about the MIBG and the bone marrow that I've been praying for. We've all agreed to put all our trust in God that EVERYTHING Will be OK.

Also, this webpage will now be used to give God the glory in all the areas that he is working on for Zachary. It will be a journal to keep everyone updated on Zach's praise reports - what God has accomplished that particular day/week. Satan is no longer going to have center stage and let me tell how Satan is now affecting this family and how he is steeling our joy. I know it is a lot easier said than done - but as long as I stay in the word - I know God won't let me down. Thanks pastor Mike for an awesome word!

We are all getting together tonight for a fish fry - also John leaves tomorrow morning for Georgia (3 weeks) for work :-(.

Thanks for everyone's prayers!!

Nikki, Zach and Kylee

Saturday, October 23, 2004 10:54 AM CDT

Ok - We got the results on yesterday afternoon - and as soon as we got them I decided to head back HOME - the Dr. said it maybe a week that we could be here at home.

The MIBG showed some tumors in the chest area - because Zach has had so many surgeries and stuff - the MRI & CT scans are hard to read. The MIBG just highlights the NB so you can see just where the NB is.

The Drs decided that Zach has to have surgery to remove the tumors because chemo is not getting rid of the NB. They stated that it's good that the tumors have not gotten any larger - but they haven't gotten any smaller. Zach will be having surgery to harvest his bone marrow and have another line put in. The bone marrow is for the MIBG treatment that Zach will have at CHOP (Philly). Zach will then have the surgery to remove the tumors in the chest and spine area and the spine reconstruction.

After the surgeries then he will have the MIBG treatment - then he will have the bone marrow transplant using my bone marrow (I'm a 3 out of 6 match).

I can't wait till Sunday - I really want to go to church and just plug into God's word right now. I feel like everything is closing in on us so fast - and I just need the peace that only God can give. The last couple of weeks I have been focusing on what is going on around me in life and not what God can do to make everything alright. It's so easy to get caught up into what is going on around you that you don't just let go and let God do his thing.

We can definitely can use the prayers! Love being home!

Zach will see everyone at GSLS Monday - he can't wait. The Dr. asked him what he wanted to do - he said - I just want to go to school and be normal like all the other kids with a huge smile on his face. One day soon I know that will happen! Did you know that he wants to be a comedian when he grows up? - The other day we were at St. Jude and he went into the bathroom to put a robe on for a test he came out with a way too small robe on singing fat man in a little suit - you know off of Tommy Boy - he had me crying it was so funny! He always knows what to do to take the tension away and put smiles on everyones face!

Nikki, Zach and Kylee

Tuesday, October 19, 2004 2:35 PM CDT

Hello Everyone!

Zach is not feeling great today - he has been throwing up and just laying around.

So, today we are up in the room all day (me, Zach and grandma). I was looking forward to doing something fun today, but I guess we will stay here in the room.

Tomorrow he will get an IV for the MIBG scan injection and then the scan on Thursday.

We talked with Dr. Santana yesterday to see what the next step is - he sat down and talked with other Dr.s - and I think something else is going on because what we were told last week and then what we were told yesterday is totally different. We came down here to get ready for the bone marrow transplant - but we will just have to wait until the results from the MIBG scan to see what is all going on and then we will all talk about the next step in treatment will be.

Zach will get a NEW custom fit brace on for his spine. Surgery does not look like it is going to happen. Zach has to have a 6 month window of good blood counts to be able to heal from a big surgery - laminectomy.

I will update with the results later on Friday after talking with Dr. Hale & Santana.

Hey KYLEE . . . . We love you and miss you very much! Thank you so much Tim & Amber for taking care of Kylee. It means alot for Kylee to be able to be with family.

Just keep the prayers coming!!

Nikki & Zach

Friday, October 15, 2004 1:01 PM CDT

Guess What????????

We came home this afternoon . . . . . . . but we have to return for our 6:30 a.m. app. for Monday - yes at 6:30 A.M.!

But, we have a whole day and 1/2 at home - after we return we will be down there until after the bone marrow transplant - so we decided we needed a quick trip home first.

Zach was crying Thursday and begged to come home - so after his scans and stuff on Thursday we started home last night - Besides - I miss Kylee and John - I would drive all night long to see their smiling faces.

I'm going to surprise Kylee and pick her up - I picked up a mug for her at Lambert's on the way home last night!

Zach will be getting his surgery next week and we will be checking into RMH - while we are on a waiting list to get into the Target House. I will post our new address once we get back down there - we maybe at the Grizzlies House for a few days first.

Well, we are going to enjoy tonight - GSLS wiener roast/hayrack ride - then tommorrow night will be family night. LOVE BEING HOME!

Thanks for everyone's prayers!!

Nikki, Zach, Kylee and John

Tuesday, October 12, 2004 3:02 PM CDT

Finally an update with NEW PICTURES. We felt adventurous today after getting awesome news!!!

All praise goes to GOD! Without him on our side this wouldn't be possible.

Well, after getting a MRI, CT Scan, Bone scan - there is a tumor still in his spine - T1-T3 area and a questionable spot in his maxilla. The tumor will be removed while stabilizing his spine.
1st:
The plan - get his surgery done right away on his spine and at the same time have a new line put in - later this week yet or early next week.

2nd:
NEXT - another chemo treatment and then collect stem cells to have some frozen for the MIBG treatment (just in case).

3rd:
NEXT - 2 more chemo treatments to get ready for the bone marrow transplant - waiting for the protocol to open up in order to use mine (NOVEMBER/DECEMBER time frame) - because of the no matching donor - I'm a 3 out of 6. To get rid of the horrible disease once and for all.

Oops . . . almost forgot - we seen the infectious disease Dr. - Zach will have an IV antibiotic added to his medications (after the new line) to take until after the transplant while taking his other antibiotics - just to make sure no more infections. After this line gets put in - the surgeons said no more lines after this one - which means Zach could not get any further treatment - his veins are impossible to get with an IV.

KYLEE: We love you and miss you very much. Make mommy proud on your grades . . . . I want to see an improvement on your Report Card! Can't wait to spend a whole day with my princess - it sounds like so much fun I can't wait!

Thanks for everyone's prayers!!!

Nikki, Zach and John

Saturday, October 9, 2004 9:15 AM CDT

UPDATE: Guess what?? Someone knocked on our door this morning . . . . JOHN!! Yeah John is here - I know I'm feeling much better! It put a smile on my face and Zach's!

Good Morning-

Thank you so much GSLS for the balloons - Zach had a huge smile on his face! He needed something to remind him that people are thinking about him and really miss him!

Well, I'm down in the business center to be able to update. I have not figured out yet how to be connected in our room. The trip down here was fine - beautiful day to travel. Zach had to stop at Lambert's we started to eat and I began to feel really really sick - I asked for the check to hurry and just get here. I believe it was my nerves. I never felt like that before.

The communication between home and here . . . . . .well two out of three appointments yesterday was a big waist of time. Zach had his MRI and we will get the results on Monday. We have a free weekend and plan on having some fun. Zach wants to go swimming before he gets his line in.

KYLEE: We love you and miss you - we are thinking of you and saying a prayer just for you before we go to bed!

There may be a chance that Zach will have a couple more chemo treatments and then have a MIBG treatment instead of having a bone marrow transplant. Whatever we decide on - very unlikely that Zach will have a transplant.

I'll update on Monday after we get the results!

Zach and Kylee

Wednesday, October 6, 2004 4:06 PM CDT

Hello Everyone!

Zach and I are getting ready to head down to Memphis in the morning. We're having dinner this evening with our family - time with everyone before we leave. Kylee is already acting out - not wanting us to leave - it began last night. It gets me frustrated but I have a lot more patience with her understanding where she is coming from.

Zach forgot his school books at school . . . . accident?! I think NOT! :-) I told him it was ok that we could just get them in the morning when we drop Kylee off at school. That put a smile on his face.

Well, Zach is still having the same minor problems - like able to sleep at night - he's been taking morphine at night and sleep aid - for the pain and I believe it's anxiety - me not sleeping in the same bed as him. He got used to me sleeping right next to him in the hospital - it's not like my bedroom is far away.

John is still away for work - he is being missed very much!

Just pray that all the test results are positive and that we can return home very quickly and be able to enjoy life when we get back.

Thanks for everyone's support!!!

Nikki, Zach and Kylee

Monday, October 4, 2004 4:54 PM CDT

Well, Zach had a lot of fun Friday Night. Thanks to everyone that was there - it made Zach feel really good - having his friends and family there.

We're getting ready to head down to Memphis on Thursday morning. Zach will be getting several tests done before any decisions are made as to what the next step is. I'm getting nervous because it has been 4 weeks now since his last chemo treatment.

Just pray for complete 100estoration - I'm standing on God's word that my son will be healed.

Zach, Kylee and I are missing John - he left for BC and it is just not the same without him here.

Leaving for Memphis is always very hard - I miss Kylee very much and she misses her bubby and mommy very much.

Thanks for everyone's prayers and encouraging words!

Nikki, Zach and Kylee

Friday, October 1, 2004 10:09 AM CDT

Well, due to the rain for this evening - it will now be held at the Pekin Holiday Inn Express - next to Menards. We will be having LaGondola.

Sorry for any confusion.

Zach is doing really good - he's even going to school!

Thanks for everyone's prayers and encouraging words - see ya tonight . . .. it's still at 6:00.

Nikki & Zach

Wednesday, September 29, 2004 9:05 PM CDT

WE ARE HOME!!! OUT OF THE HOSPITAL AND ABLE TO SLEEP IN A REAL BED!!!

Well, Zach is having a fun day! We got out and Zach wanted to eat at Hooters - so we did and . . . . They sang to him - He was sooo embarrassed. I laughed.

Then the family got together this evening and ate at Heavenly Delights - we enjoyed it - of course my mom had to complain :-).

Well, Friday night at 6:00 we are having a wiener roast at my parents - because they have the big yard and live in the country. If you are coming just bring yourselves, chairs, and if you have any roasting sticks for the wieners. IF IT RAINS IT IS CANCELED - WE LEAVE NEXT WEEK TO MEMPHIS SO NOT TO SURE OF A RESCHEDULED DATE - SO JUST PRAY NO RAIN!

See you at the wiener roast - and if you plan on coming or need directions please call - 309-303-8649.

Love beig at home!

Zach and Nikki

Monday, September 27, 2004 1:17 PM CDT

Hello Everyone! It sounds like Wednesday morning Zach will be going home. The BBQ is going to be held Friday night @6:00. Please call me if you would like to join in on the fun! Zach would love having his family & friends there with him.

Zach is doing wonderful - GOD does awesome things in Zach! The person that Zach is - his great big heart, his laugh, his smile - in everything he does you can see God. I am so very blessed that God chose me to be his mom. I am very thankful - Zach has taught me so many things!

Well, today has been fun. Frank from Journal Star was here taking pictures to do a story on Zach. Also, Pastor Mike was here right at the same time which means Frank got pictures of Zach and Mike together. Zach had to have his favorite nurse in the pictures too, (Allison) - He always goes for the blonds. When he was little it was Kristen and he would leave love messages on the white board.

October 7th we are heading down to Memphis for tests, surgeries and what is the next step? Everyone pray that the next step is to enjoy his long life here on earth!

Oops almost forgot - I ran into Marilyn (Aaron's mom) at St. Francis on my way home to go get some things done before Zach gets out. We want to have fun when we get out of here! A benefit for Aaron is October 3rd - check out www.caringbridge.org/il/aarondhunter for further information or watch the Morning Mix tomorrow morning at 7:40.

Well, again thanks for all the prayers and encouraging words!!

Nikki & Zach HEY KYLEE . . . . . we love you!

Saturday, September 25, 2004 0:43 AM CDT

Hello Everyone!

Zach is still in the hospital and now it looks like Tuesday is the earliest we will be getting out :-(!

Zach is having a BBQ for anyone that wants to come to celebrate getting out and going home. Just call and let me know who's all coming (cell # is posted on the bottom). I'll post the day that it will be held. Maybe Wed. Night?! if we're out of the hospital.

Our appointments in Memphis is changed to a later date - we will be heading down October 7th. We're not too sure how long we will be there.

Zach is still doing wonderful - no fevers!

LOVE YOU KYLEE!!!! Also, thanks for everyone's prayers, mail and encouraging messages!

Nikki & Zach

Thursday, September 23, 2004 2:39 PM CDT

Hello Everyone!

Zach is in the playroom - Playing Monopoly!! God is good! Zach is finally himself - putting smiles on everyones face! He is constantly making me laugh. He can't wait to get out of the hospital. The problem is - he gets 5 IV meds a day and 4 oral meds and no central line - so going home is just not duable. Hopefully Friday we find out what it is and maybe the meds can all be done orally & at home.

We got a call from Memphis yesterday - they want us there on Monday. Only not too sure if we are going to be out of the hospital. The soonest is Saturday.

Thanks for all the cards, messages and prayers!!!!

Nikki & Zach

KYLEE - - - - WE LOVE YOU AND MISS YOU VERY MUCH - IT'S NOT THE SAME WITHOUT YOU!!

Tuesday, September 21, 2004 7:39 AM CDT

Finally an update . . .

Well, Zach did not get his PIC line in but he is off of all the monitors and oxygen!!!! Zach's running out of places for a central line and didn't want to ruin the last spot with a PIC line. Zach has not had a fever for 2 days now and he was walking around last night!!!!! So, great big improvements - Thank you God!! Zach was back to himself last night - arguing and everything. John and I ate at Chili's last night (all proceeds went to St. Jude) and we seen our nurse from 1st shift.

We have to wait for the state labs to figure out exactly what bug Zach has before we can go home - the Dr. said maybe by Friday we can go home.

We will be at home for a week or two before we head down to Memphis - so we can get a break from being inside of a hospital!

We love you Kylee and miss you very much!

Nikki & Zach

Sunday, September 19, 2004 8:25 AM CDT

Hello everyone!

Zach had his line out on Friday. He's still running fevers - Friday was the worst - now it's not getting any higher than 101.7. He just needs lots of prayers!

We've decided God is who we will be leaning on. No more chemo, no more bone marrow transplants, just go home and live life to its fullest. After years of treatment - it has taken a toll on Zach and I know leaning on God right now for treatment is the best for Zachary right now. So, I am praying that he gets better to get out of the hospital - off of oxygen - off of all those monitors - start eating - no more fevers - and we can go home on antibiotics. They are going to try and get a temporary stable line in his femural vein and take the antibiotics at home. They realized after taking out the line that Zachary is very hard to get a good IV (even while he was asleep). So, Monday he's going to surgery to have that done and pray that we get to go home!

As a mom this is the scariest - but I'm getting ready for church so I can be pumped up with the hope, peace, patience everything that God has to offer. The hospital environment doesn't exactly offer those things! Zach still has to go to Memphis for the surgery and look into possibly a treatment with minimal side effects.

Thanks for all the prayers and support!

Nikki and Zachary

Thursday, September 16, 2004 6:46 PM CDT

Well, Zach just got done eating - John brought him up a beef and cheddar from Arby's with curly fries - he ate all the fries and 2 bites of the beef and cheddar. WOW

Also, all day today he has not had a fever. He goes in for surgery tomorrow at 11:30 - to take out his line and have a PIC line place until the fungal infection is gone.

He is feeling so much better today - Thank you God!

Thanks for all the prayers - they are working!!!

Nikki & Zach

Wednesday, September 15, 2004 9:10 PM CDT

Hello Everyone!! Sorry the update took so long. Grandma is giving me a break this evening and staying with Zach tonight! Well, they've narrowed the fungal infection down to 2 possiblities - neither does he get to keep his line. Both are very rare (the Dr. explained that because Zach has had yrs. of treatment that his immune system is not the same) and 0% chance of clearing it out of the line. So, on Friday Zachary will have his 6th line removed (he has only had it since July 13, 2004) - it's a double hickman tunneled through his groin down his femur and up through his abdomen. That was their 3rd try in July to try and get one in Zachary. Zach is very upset.

Because of the line being taken out he can not have TPN and this will be his 2nd week really without anything to eat. I've requested breeze drinks (protein) to be on his food trays and hopefully this will work. They started him on a whole new set of antibiotics - some by mouth like 8 pills - they came in about 8:00 this evening and woke him up and Zach just had ativan and was feeling pretty good - He told the nurse she should of been in there at 7:00 and that he would take half now and the other half when he feels like it. Obviously he feels like he is not in control and trying to take control of as many situations as he can. Well, if they put in the pic line well then sometime next week we will be able to go home with IV antibiotics and at least sleep in our own beds! Zach is upset that I'm sleeping in my own bed tonight and he is not.

Well something totally God happened - a gentleman named Murray came in to pray for Zachary and Zach says his spine feels totally different - a very good different he keeps telling everyone how much better his spine feels - Thank you God for every thing you do! Also, Zach has been having a lot of ringing in his ears from some of the chemo and now Zach said it is barely there!

Yesterday we had some visitors that put a smile on my face and Zachs - - - Marilyn and Aaron (www.caringbridge.com/il/aarondhunter) he also has NB and from the Peoria area - Marilyn is such a good mom and Aaron you are our superhero too! Both of them mean a lot to us so keep them in your prayers!

Thanks for all the messages in the guestbook - it's nice to be able to read those and be encouraged!

Nikki and Zachary

Monday, September 13, 2004 7:40 PM CDT

Hello everyone! Thanks for everyone's messages!

We found out this afternoon that Zach has a fungal infection and we will be here for at least another week:-(. . .

Zachary keeps throwing up and running a temp. - I knew something isn't right. I didn't think a fungal infection. So, tomorrow they will put him on new antibiotics and we will be on the road to recovery!!!!

His platelets and blood dropped again - even though he just had transfusions the past 2 days - the Dr. said it's because of the fungal infection. I can't wait to get out of here and be back to the normal routine. Only - as soon as we get out of here we have to head to Memphis for the big surgery. Well, I know God will take care of everything and I'm still learning to just give it ALL to him because he knows how to take care of everything!

Zach and I really miss Kylee - It's not the same without her - We love you Kylee!

Trusting in God!

Nikki & Zachary

Sunday, September 12, 2004 10:39 AM CDT

They took Zach off of one of his antibiotics this morning. He just returned to the room after having an x-ray. He's getting ready to get 2 units of blood and his WBC is outstanding . . . so he's done with the GCSF shots.

Only all last night he was running a temp. 102.7 and throwing up and still throwing up this morning. I have him sitting up right now in the room with John - the Doc wants him up even though he is feeling very sick. We are waiting on the x-ray results to see if something is going on -

Can not wait to get out - everyone keep praying for his speedy recovery to get out of this hospital !!!!

Also, keep praying for Aaron and his family (www.caringbridge.org/il/aarondhunter)!

Believing in that Miracle!

Nikki & Zachary

Saturday, September 11, 2004 6:36 AM CDT

Well, First we want to say thanks for all the encouraging words in the guestbook - it means alot! Also, thanks for all the prayers. I would really enjoy going to church tomorrow . . . But it looks like the soonest now would be Tues.

Zach started having tremors again last night so I made sure he got some Tylenol and Motrin and his Morphine - he still kept running a 102.7 fever - and in pain. Now he says his stomach is hurting on both sides - and his blood pressure kept dropping last night it all started around midnight. Being cooped up in a hospital isn't exactly an encouraging environment and it just tends to wear on you emotionally.

That doesn't mean that we are not believing that God will make everything OK and we will hurry and get out of here.

Zach keeps talking about when he gets his drivers license - and what kind of car he will be driving. Talk about fantasy world . . . It just puts a smile on my face - because I can not wait - John will have to be the one teaching him how to drive - on the other hand - I would rather Zach drive like me than John :-)!

The trip to Memphis - they are waiting for Zach to get all better and give us a couple days at home then we will be coming down.

Believing in that Miracle!

Nikki and Zachary

Thursday, September 9, 2004 10:21 PM CDT

Well, Zach's been running a fever and by 5:00 p.m. it was 104 after a lot of motrin & tylenol and he was having severe pain in his head - so they gave him IV morphine and new antibiotics to try and get rid of the infection.

His counts keep going down - WBC .1 - Hemoglobin 9.1 - Platelets 30? not too sure - but getting close to needing blood products - ANC =0

So, keep the prayers coming - I hate when Zach has any kind of pain! I love him so much and would love to be able to see him have normal things to deal with - like girls calling and staying out too late with his friends. That would put a smile on my face instead of making me mad. I just grin thinking about one day we are going to have those times - I can't wait! I would be loving every minute of it - only he would have to have a cell phone so I could call every second to make sure he was ok. You think I'm kidding . . . . . . I'm NOT!

I want everyone to visit Aaron's page - send encouraging words to Marilyn & Aaron & the rest of the family - Marilyn worked at St. Francis in 1997 when Zach was first diagnosed with NB and we used to talk. Her son Aaron was diagnosed with NB and has relapsed again after his allogeneic bone marrow transplant. Anyway - please pray for their family http://www.caringbridge.org/il/aarondhunter.

Thanks for all the prayers!

Nikki & Zach

Wednesday, September 8, 2004 1:54 PM CDT

Zachary is back in PIC at St. Francis. His ANC was 200 with .4 WBC and last night when I went to give him his GCSF shot he felt very hot. 103.3 hot . . . I was in denial all day because he had not been feeling very good and shivering all day - MOM! I'm cold turn off the air - well . . . I didn't take his temp. - that way we wouldn't know that he was running a fever - sometimes when everything is coming at you - denial sometimes is part of sanity time - probably not the best way to deal with things.

I just want to say a BIG thanks to everyone - I really needed to hear what everyone wrote in the guest book - I am just exhausted and needed words from God to say - Nikki & Zach I am here and I have everything under control. You get lost in everything that is going on and you're like - GOD are you there? Those are the times when he wants you to press in and just give everything to him.

He's in the hospital getting antibiotics - he's starting to feel better this afternoon - Praise God - he keeps this up we will only be in here for another 3 days on antibiotics as long as his blood counts recover and he starts eating.

Dr. Hale from Memphis called - they are checking his scans to check over the spine - tumor/no tumor? Depending on that answer - it will be a neurosurgeon or an orthopedic surgeon doing his surger at LeBoehner's - we will be heading down as soon as his counts recover.

Thanks for everyone's prayers!

Nikki & Zachary

Tuesday, September 7, 2004 4:02 PM CDT

Well, Zach had an appointment at St. Jude this morning (Peoria, IL) for a check up and to see how his blood counts are doing - didn't need blood his ANC=200 So, still getting the GCSF shots.

Zach's taking a nap right now - his spine, neck and head is hurting him along with a lot of ringing in his ears (which is from the cisplatin) and on top of everything feels like throwing up.

Well, we are getting ready to go to Memphis - any day now just waiting for the Drs down there to call and let us know they are ready for us. Zach will be having the big surgery as soon as his blood counts recover at LeBoehner's Children Hospital. His spinal cord is causing him severe pain and needs to be stabilized with bigger rods and pins.

Just leaning on God to have him carry us through everything - because without him . . . I would not be able to handle everything and Zach knows that God is helping him too and that one day very soon he will be 100% restored!

Meanwhile, I'm getting the house in order all cleaning, laundry and bills paid to be all organized and ready to be away from home for a while. Also, spending quality time with Kylee (she hates it when mommy and bubby leave)! I let her know that she is loved and that I love her just as much as bubby even though he gets more of mommy's time - it's hard for kids to understand. Especially at the fact she had just turned 2 yrs. when Zach was diagnosed. That's all she remembers - that I spend a heck of a lot more time with him than her and I hate it - I hate seeing her heart broken - she's only 9 yrs. but she is being very understanding this time. She has been improving soo much - I'm very proud.

It is very encouraging to go to the guestbook and have people write such nice things - it means a lot!

Thanks for all the prayers!

Nikki, Zach and Kylee

Saturday, September 4, 2004 11:17 PM CDT

WE ARE HOME!!!!

Very exciting - first thing on Zach's mind and mine - sleep in our own beds!!! Woooowooo No beeps in the middle of the night - no peeing every half hour from all the fluids - no lights on in the middle of the night!! No being woke up to take pills - the nerve!! the list could go on and on!

So, the CT scan results - no new tumor - Good News!! Also very good news - Zachary's strength in his legs are amazing today - all I can say is thank you God!

In order for Zach to be stabilized (also fluid in the spine)- needs extensive spinal cord surgery - bigger rods and pins and in traction for like 48 hours prior to the big surgery with screws and weights and not too sure of all the details - because I'm not too sure what my decision is.

Things that is keeping me from making up my mind . . . . we could keep the brace on that he has on in the picture and keep on taking the chemo and get ready for a transplant if his pulmonary functions get better - Which I know God can do anything - and take a chance that he could go paralyzed if he turns his neck the wrong way etc. With very minimal physical activity for Zach.

Or quit the chemo and in 10 days have the big surgery and stay off the chemo for another 2 - 3 weeks. Very hard decision!! We are just praying for the guidance to make the right decision. I'm kinda considering the surgery - ??

So, Zachary is home and is wearing his very stylish brace! So stylish Zach says that everyone stares at him - which he hates sooooo much. That is the biggest reason why he was sooo excited to get rid of it.

Thanks for everyones prayers and the very nice words in the guest book - Thank you sooo much!

Nikki and Zach

Friday, September 3, 2004 8:31 PM CDT

Zach is still in the hospital - hopefully tomorrow evening we will get out. Zach ended up getting an MRI done this afternoon. The radiologist hasn't read it yet - but the Neurosurgeon looked at it and it looks like it's not a new tumor mass that is causing the pain it's the neck/spinal cord. The area T2 looks like it is unstable which is causing Zach the pain and the sensation to be able to walk. He's able to walk - it's just very hard for him - very weak. So, now we are waiting to get a CT scan done - they don't know if they will have to do surgery to have bigger pins and rods put in his spine in order to stabilize him - or if Zach will even be able to go through something like that - due to the high doses of chemo he's getting to get ready for the bone marrow transplant. Which is another issue - In order for Zachary to be able to get a transplant his pulmonary functions have to improve (due to all the radiation Zach has received over the years his spine is deteriating) - so if they are unable to stabilize his neck/spine - his mobility will be very minimal and there fore we will not be able to exercise his lungs for his pulmonary functions to improve and he will not be able to get the transplant. I'm having a melt down - the last week or 2 I've been really excited how well Zach has been doing and reading God's word and believing for a miracle - no questions asked and tonight - well, I cannot write into words how I'm feeling. So, if we get to leave tomorrow evening - Zach will have to wear that brace again - and he is sooooooo excited - actually he's not even talking to any one at this moment and is watching DVD's on his laptop. His computer is very cool - he picked it out with the help of John - a 17" screen - totally a computer for entertainment - oh no he says he is able to do his homework on it - HA HA! Lots of homework - with DVD's always playing :-)

Still Trusting in God for a Miracle! - Thanks to everyone signing the guestbook - puts a smile on Zach's face!

Nikki & Zach

Thursday, September 2, 2004 7:07 PM CDT

Everything was going good - Zach got his 4th day chemo treatment only 1 left - after that he went to Circuit City to get his laptop - only he got severe pain from his spine going into his head and he couldn't walk all at once. We just left St. Jude and we had to turn around and go back. Well, now we are in patient waiting to get scans and stuff done to see what's goin on. I'm beliving it's not Neuroblastoma - just something with his laminectomy. He can't do anything but lay down. So, it's the waiting game.

Tonight he has to get 2 untits of blood - his blood counts went down . . . then tomorrow he will get his last dose of chemo for this round. We are inpatient at St. Francis until they find out what's going on. Will keep this updated.

We were told today we won't be going to Memphis until Sept. 13th, so everything has changed and I'm sure it's going to change again.

We ended up getting him his laptop for when he's in the hospital for e-mailing, internet and entertainment.

Thanks for the prayers and signing the guestbook!

Nikki and Zachary

Monday, August 30, 2004 5:12 PM CDT

Zach's blood counts were ok to start chemo today - yeah! So 1 day down 4 to go. Cyclo and the Topo doesn't make him too sick like the other stuff does. So, this treatment is a breeze compared to the next one.

We're still planning on being in Memphis 9/7 - 9/11 for a bunch of scans and tests. Hopefully his blood counts will be high enough that we don't have to cancel those - I really hate to wait to get test results.

We are planning another bone marrow drive ASAP. I will post the date as soon as we get one set with the American Red Cross. So, tomorrow morning he will start day 2 of 5 - pray for Zach that everything will keep going smoothly!

Thanks for everyone's prayers and messages in the guestbook!

Nikki & Zachary

Friday, August 27, 2004 10:39 AM CDT

Quick trip to St. Jude this morning - already back. His white blood count is really good - his hemoglobin is really low - almost needed blood - and his platelets were really low - but not low enough to need platelets. Zach's suppose to be getting chemo on Monday - but his counts were not high enough to say for sure he will start on Monday. So, everybody please pray that his next chemo treatment will not be delayed!

So, believing that everything will stay on track, he will get chemo Mon - Fri. On Tuesday, Sept. 7th we will be traveling to Memphis to St. Jude. This time we are flying. I've been told by Zachary that I have a hard enough time driving around here - that he will not drive with me to Memphis. Have you ever gotten to your destination before and wonder how did you get there ?? . . . Well, lately that is how we've been getting around and that is not such a good thing. My mind is being occupied by deep thought - which I've been told by John - not a good thing either :-)

So, Zachary is still feeling wonderful!! Back to his sarcastic ways - which is a good thing. My favorite show was Friends and my favorite actor is the one that plays Chandler Bing - which that is totally his personality - very sarcastic - Zach probably gets it from me :-)

Well, the Bone Marrow Drive is tomorrow - Saturday - God is going to bring that perfect match our way!

Thanks for everyones prayers and the messages for Zachary!

Nikki, Zach and Kylee Allen

Tuesday, August 24, 2004 8:52 PM CDT

We had a visit to St. Jude today. His blood counts came back with his ANC really good but he needed to get platelets - so . . . it was a long day at St. Jude. The good thing is - Zach has been himself for the last 3 days - I love seeing him joke around and with a smile on his face.

School starts tomorrow - WOW. It means going to bed much earlier - not good. Another good thing about GSLS - Zach will be on the basketball team. Very exciting - even if he can't play very much - it's just and awesome feeling seeing him wear a jersey and participate in going to the games. It's very exciting to have everyday normal things in your life that every healthy child gets to participate in. The more you have of the normal things in your life - for those brief moments you can forget about the cancer thing and just live in the moments like everyone else. Those times are treasured at this household!

Well, Zach is feeling wonderful right now - after that awful treatment - Thank you God for helping Zachary through everything - you are an awesome God and I could not imagine what it would be like going through this without you on our side!

Thanks for all the prayers!!

Nikki, Zachary and Kylee Allen

Friday, August 20, 2004 11:31 AM CDT

Hello everyone!

We just got back from St. Jude and didn't need any blood products! His ANC is 100 but everything else is low but not low enough to need blood. Zach woke up and is very spunky today!

Still sleeps an awful lot, but when he's awake he's more like his normal self. Can't wait till school starts - going to have a fun weekend - even though Zach probably shouldn't be out and about because of his low ANC. But sometimes a kid has to be able to be a kid instead of being cooped up in the house.

Keep praying for a donor that matches!! Next Saturday is the bone marrow drive - so spread the word.

Something that made his day - no more IV!! Just taking magnesium, Zofran by mouth. Still a little puky but nothing like it was - I just want to say thank you God - the little things is what keeps us going!

Thanks for sending encouraging words to Zach & your prayers!!

Nikki, Zach and Kylee Allen

Wednesday, August 18, 2004 9:37 AM CDT

Zachary woke up this morning and is hungary and very grouchy! He wanted a loaded omelet biscuit from Hardees - so Kylee and I ran to Hardees.

And at least he's talking - so the grouchy part really doesn't upset me. He's sorting through his basketball cards and putting them in his book. I'm so happy to see him going back to his normal self! 3 more days on IV's and he will be done until we visit St. Jude in Memphis the week of Sept. 7th. He's suppose to be starting his next chemo round on Aug. 30th - but the Dr. said no more chemo until we get CT, PET, bone scan. So, we will be very busy Sept. 7th - 11th.

I'm believing that God has healed Zachary and all the Neuroblastoma is gone - no more chemo ever again! Zach won't need a bone marrow transplant because God's taken care of everything his way - pain free!

So, I'm going to make Zach get up an walk around more today - he needs to get more exercise . . . especially with him eating the food he's craving.

I'm off to clean the house - my favorite! ha ha!

Thanks for everyone's prayers and encouraging words in the guest book! Zach really enjoys reading those -

Nikki, Zachary and Kylee Allen

Tuesday, August 17, 2004 11:08 AM CDT

We just got back from St. Jude. Zachary is feeling a little better today. He is actually hungary for spaghetti & pumpkin pie . . . so I'm cooking him some spaghetti and going to pick up a pumpkin pie from the store. The Dr. ordered more IV fluids and meds. Zach still feels nauseous from the chemo - but he hasn't thrown up today - so, maybe he is on his way up the hill again.

Zach just never acted like this before after his treatments - he's not even talking - he's very emotional - but I'm doing everything to put a smile on his face.

Something that put a smile on his face - School starts next week! I'm not even joking - he is so looking forward to school this year. I'm sending him back to the school he's gone to since preschool - last year for his 6th grade I sent him to the public school - I figured he needed to become familiar with bigger classes and more kids. Well, that never happened so . . . . He's going back to GSLS.

My baby going to be in 7th grade - can not believe it!

Thanks for everyone's prayers!!!

Nikki, Zachary and Kylee Allen

Monday, August 16, 2004 9:03 AM CDT

Zach got out of the hospital on Saturday. He was so glad to get out! He's on IV fluids and several other medications to help with nausea. This has been the worst time after recieving chemo. I'm so worried about Zachary right now - never did he ever have a reaction like this. Even after his transplant in 1999. He got a fungal infection but the non-stop throwing up. Zach never cries - well on Thursday night - he was crying and asking me questions I really didn't want to answer. It's alot harder on him now that he is older and has seen alot more.

Dear God - Please help my baby feel better - allow him to get the strength to go on fighting - God you are the only one that can help him right now and I know this family is trusting in you to answer our prayers and I know several other people are standing in agreement.

The hardest thing is when your child's spirit is not the norm. Right now - Zach doesn't even socialize - anyone that knows Zach - that is his favorite pass time - laughing and putting smiles on everyone's face. One thing you can talk about and 100f the time you are guaranteed a comment - maybe small comment but you'll get a reaction out of Zach - talk about fear factor with him! I found some school supplies with Fear Factor as the theme. That put a smile on his face!

We're suppose to be at St. Jude this morning - I called to ask if we can just come tomorrow - I have to have someone help getting him up and down and he is just not wanting to go any where but his bed.

One surprise that put a smile on his face - Zachary came home to an aquarium in his room - John got him an awesome fish and aquarium - he named the fish pug - since he's been wanting a pug in the worst way - but right now with his ANC usually being between 0 and 400 he can not have any pets.

Please pray that Zach will find a perfect bone marrow match!

Thanks for your prayers!

Nikki, Zachary and Kylee Allen

Wednesday, August 11, 2004 4:12 AM CDT

Zach is getting ready to start day 3 of 5. The first night went really well. Last night it all caught up with him. As a mom when he's not feeling too good it is very easy to let the nurturing side come out and not make him walk around - well last night with him being so much bigger than when he went through all of this before - it took like a half hour to get him out - what a work out! He wanted to just stay in bed. John and I were both getting him out of bed and it still took like a half hour! It is also mentally a lot harder on him now. Zach gets very depressed. The 3 of us started going to counseling to try and help him with the depression. I just pray that God hurry's and makes him all better. I don't think I can actually watch him and let him go through anymore. Enough is Enough! My baby has been fighting Neuroblastoma since 1997. The last remission was 3 yrs. Tell me - where did that Neuroblastoma go for 3 yrs! and now after all that time decide to grow all over. I get so upset just thinking about it. Am I actually having to make treatment or no treatment decisions? I really did not miss this!

The 3 years of remission . . . .What an awesome time we had together! We are planning more awesome times together - so God - pleas hurry and take this Neuroblastoma away - Zach is wanting to hurry and have that normal life back. It was hard when he was first diagnosed to go from normal life to having a child with cancer. Then back to normal life for 3 years and now after all that time back to well a child with cancer - really a teenager with cancer.

What is really unique - Zach does not remember virtually anything from before. He was 7 yrs. old when he recieved his bone marrow transplant - he remembers nothing! So for parents out there that have young children - it is possible for your children not to remember. Only parents don't forget. I had blocked all that out of my memory - driving over that bridge going to Memphis - I couldn't breath for the first time. The memories came back all at once. They all hit me and I couldn't breath. It took only a few days for the being familiar with St. Jude all came back.

Well, I'm going back to Zachary - I know he's missing me! That's one thing that hasn't changed . . . he still loves his mommy and always wants me by his side.

Thanks for everyone's prayers!

Nikki, Zachary and Kylee Allen

Friday, August 6, 2004 12:21 AM CDT

Zachyboy is doing great and plans on having an awesome weekend!

His kidney functions and ANC is great so he will be going in the hospital on Monday (8/9) to start the hard stuff. He's not so happy about that but I have a lot of surprises planned for him. Hanging out with his family is his favorite pass time. I got him a couple lego sets to surprise him with on Monday morning. I always want him to have things to look forward to . . . but how do you make a child look forward to the day he is going in for chemo - I guess I just try and make the situation as best as possible. We are going to be in Peoria on Saturday to cheer for the Memphis to Peoria Runners - Thank God for wonderful givers like them - if it wasn't for them - St. Jude wouldn't have the funds they have from them year after year. All I can say is thanks! August 28th is our first marrow drive to find a match for Zachary. His last bone marrow was in 1999 and they used his own. This time it has to be an allogeneic transplant - so one day real soon I'm standing on God's Word and there will be a perfect match.

Thanks for everyone's prayers!

Nikki, Zachary and Kylee

Tuesday, August 3, 2004 3:48 PM CDT

Hello everyone!

Zachary still has no matches. Please consider being a bone marrow donor. African American's represent a very small number of bone marrow donor's. It makes it harder for them to find a match. Especially if you are African American seriously consider going to American Red Cross to be a bone marrow donor. You could save a child's life! We are having a bone marrow drive in Peoria IL in hopes to find Zachary a match. Please contact me at allennl30@hotmail.com if you would like to be a donor!

Zachary is doing pretty good today - sleeping all day - planning on spendig his evening with his uncle Tim.

Thanks for your prayers and God Bless!

Nikki, Zachary and Kylee

Monday, August 2, 2004 11:09 PM CDT

Zachyboy says hello!

Praise God - His ANC is no longer 0 - it's now 900 - Doc said he can go back to kissing the girls - He's happy - actually his exact words were - YUCK!

Zachary was originally diagnosed at age 4 1/2 yrs. in June 1997. Zachary recently relapsed for the 4th time in March of 2004 with stage 4 Neuroblastoma. Zachary was in remission for about 3 years after several surgeries, an autologous bone marrow transplant, radiation treatments, gene therapy and other experimental drugs. St. Jude is currently getting him ready for an allogeneic bone marrow transplant (possibly in November 2004)- only right now there are currently no matches for him. Zachary is getting ready for an in patient treatment on Monday August 9th. We are believing that God is with us each and every step of the way and that he will find a match for Zachary. Please pray for Zachary! After fighting so long - I hate when he has any kind of pain - I just pray that God takes away his pain and that one day real soon that he is completely healed.

The Dr.s are trying to shrink the tumors before the bone marrow transplant so he can go into the transplant with minimal disease. We are currently in Peoria IL. to recieve chemo close to home (St. Jude Midwest Affiliate) before going down to Memphis to St. Jude Children's Research Hospital for a very long stay. Thank you for keeping Zachary in your prayers - the power of prayer has made a big difference in Zachary - the Dr. always comments how Zach is very unique - of course we all know why! The one and only answer - GOD

God Bless!

Nikki, Zachary and Kylee

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