History

Wednesday, November 10, 2010 9:52 AM CST

Sending Happy Birthday wishes to Sky... his birthday was November 4th but it took me a bit to update. Of course it was a hard one for me. I kept hearing him say I am in the double digits now. Of course I heard it in his little 5 year old voice. It boggles my mind that Sky would be 10! Life would be extremely different than it is. As usual I was fine up till two days before his birthday and then boom the brick hit me. I kept myself very busy and still was a mess. It is nice to have so many friends and family remember that it was Sky's birthday and to send their love. I went to Toys R us and bought Sky an electic drum set. I figured music would be something he would love to be playing with. Plus since I knew I was taking it to childrens I figured it would be perfect to sit on someones lap in the hospital and play. The clinic at childrens was completely different and it helped with all the memories that place brings me. It was great to see everyone. Of course Pax got a ton of attention with being so cute just like his brother always did. Cant say it wasnt hard but it felt good doing it. Then of course it was off to release balloons at his rest site and to the pizza cafe (valentinos as Sky called it)for dinner with family. The day was so exhausting I fell asleep better than expected and the next day came with a feeling of relief. Until the next hard day comes I will continue remembering my love bug daily and sending all my heart each day. Thanks for checking in on us. In honor of Sky please smile as much as you can as he always did.

Monday, May 24, 2010 11:49 AM CDT

I meant to update this on May 22nd but my little baby likes to take up all of my free arm room for typing. The week leading up to May 22nd was one of the hardest weeks I have had in awhile. Not sure on why that was but I did a ton of crying and for some reason my brain only let me think of Sky's last moments. Friday night I never slept cause all I kept thinking was when I fell asleep four years ago I awoke to Sky not breathing. Let me tell you it is one of the most horrible things to think about. I know the phrase he is no longer in pain helps but only so much. There is always why him, why did he have to go through that pain, why did he have to be one of the kids that didn't get to conquer cancer and be here with us. The CureSearch walk is always a hard event to go to as Sky had passed away the week before. I go to honor his beautiful life but it is always such a hard day. I like going up and letting go of the balloons on stage for the kids who have passed away but looking at all of the other parents up there letting go of balloons opens such a hard empty place in my heart for them. They all know my pain! Horrible!

On to a lighter note while I cry... Saturday May 22nd. To honor Skylar, Adam and I went to the cemetery and let go of balloons, said the our father as that was his favorite prayer. Then headed off to Cheeseburger in paradise. This was where Sky got on stage many times and sang brown eyed girl to me. One of my favorite memories : ) :)!! After some delicious food with family we went and rode the ferris wheel at Scheels. To do my silly 5 year old moment I held up my arms as we went over the top. Adam asked me not to but Sky would have loved it so it was done. After that the hubby took me to the store for my favorite ice cream chocolate with peanut butter... mmmmm and we sat around and enjoyed playing our little addition Paxton. The actual day was better than the week leading up. Funny but that is usually how it is. Now I can breath again a little better as the hardest day I ever had to go through has passed once again. 4 years! Ugh you are so missed Sky!! I love you and we will see you again someday. Oh what a day that will be. Until then I want to remind you to hug your children. Give them extra kisses tonight and blow a few up to Sky while you are at it.

Wednesday, December 23, 2009 10:59 AM CST

Baby Walsh has finally arrived! We were blessed with a healthy 8pd 2oz baby boy. Paxton Parker Walsh was 20 inches long and arrived on 12-13-09. One day before my 30th birthday. What an amazing gift! He has been such an answered prayer to us. Adam could not be happier and seeing him and his son together put more love in my heart that I thought would ever be possible again. I have had some tough days while looking at Paxton and thinking of the first days with Sky but then I remember be happy and enjoy this and I can usually turn it around. Feeling like a mom again is such an amazing feeling. I cant stop kissing his little head. It is a nice feeling knowing our baby is being watched over by his very own guardian angel big brother.

I want to wish all of you a Very Merry Christmas! We sure are enjoying ours :)

Wednesday, November 4, 2009 8:12 AM CST

HAPPY BIRTHDAY SKYLAR MOON!!!

Crazy you would be 9 years old. When I talk about it I cant imagine how different life would be. Running you around to activities and having friends over. Every year I think about how amazing of a party you have in heaven and I have to admit I am jelous of not being invited. This year however you have papa there. I am sure he will be amazed with all the amazing things that take place. We will let go of balloons tonight at your site and head to your pizza cafe to celebrate.
This baby is coming in just a few days over 6 weeks and it reminds me daily of how excited I was to meet you. I had no idea how easy it was going to be to fall in love with a child instantly. I look forward to meeting your little brother or sister and having that mommy feeling all over again. I know you will be the first one there to kiss its little head.
Enjoy your celebration today. We all love you and cant wait till we all are together again. -MOMMY-

Tuesday, April 28, 2009 2:33 PM CDT

May 22nd - Skylar ........ Happy heavenly birthday. The thought of you today has brought such smiles. You made my life so much better for being a part of it. There isnt a day that goes by that I dont miss you. I know you are happy and with out pain and now I can appreciate that. I so look forward to having your little sister or brother and finding you in things they do. I am sending big Skylar hugs and kisses to you! I love you so much and mommy cant wait to be with you again some day.
We are coming up to the 3rd year of Skylar earning his angel wings. I remeber even saying the very first year that there would be a day I would have to say its been 3 years or 5 years or 10 and it always made me cry. Some people have made this better for me by saying each day is not one further away but one closer to seeing him. I like that outlook much better.
I have just signed up again for the cursearch walk and once again the TEAM is called Reach For Sky(http://www.curesearch.org). Its always nice to go see all your old friends from clinic and catch up. However there are always those new families you never met and you know oh to well what they have been through.
On a much lighter note Adam and I have just found out there will be a little Walsh on the way due December 25th. This has brought some much needed joy into my life. It is still very early but I could not be more excited. I love to think I will have a child that will be Skylars brother or sister. How nice it will be to tell them about their brave brother and show them all his favorite toys. A few years ago I never would have thought I could handle this. Hear we are and my heart is so full of joy.
Thank you to all who come by and still check in on my lovely little man's site. You have all meant so much to us.
Skylar we love you and cant wait to see you again :)

Saturday, November 15, 2008 9:06 AM CST

Thank you all for checking in and leaving such nice words for Skylars Birthday. It was an extremely hard day for me. My boss at work was very understanding and let me leave early. Went and spent some time with my family to get out some tears. Drew and I met for a drink and talked about Sky and all the wonderful things he brought to this world. After Adam got off work we headed to the cemetery and I lost it there. I always say this is nothing anyone should ever have to go through. Visiting your child at the cemetery on his birhtday. After that we met at Valentinos for some food and good family and friend time. Every one brought a gift age approprate to donate to Childrens hospital in memory of Sky( Thanks Ginger and Christy for putting this together). It is nice to have people step up to the plate on a day like this. I had no idea what to do and they saw the pain I was having with this and just put it in there hands. I was glad to be home in bed by the end of the evening because alot of crying can exhaust you. The seasons coming up will keep that painful feeling always in the back of my head and heart. I am doing better however these holidays always get me.
On the other hand Adams best friend and his wife celebrated there first child entering the world on November 4th. How neat that we get to celebrate little Charlies birthday on the same day as Sky's. There will always be a nice celebration to attend.
Once again thanks for still looking in on us. If you have the time go donate blood. Holidays always put a damper on the blood supply. My work is so nice they have a bus come right to us. Makes it pretty easy. Happy Holidays to you all and remember I always enjoy reading entry's knowing you were here.

Monday, October 27, 2008 1:35 PM CDT

November 4th 2008
Happy 8th Birthday to my beautiful son! Enjoy all that heaven has to offer you on this day. We miss you and cant wait to celebrate with you again.

Sky-
Eight days till your birthday. I am sitting at work thinking of what presents you would like. I have been watching movies lately that I know you would love. I keep picturing you doing things with Adam and I. Finding myself saying Sky would say this right now or would do this right now. I hope you know how much I love you. How much I wish you could open your birthday presents in fron of us. I have seen a few costumes that I know you would want to wear for Halloween. Do you get to dress up there? From what I am told everyday is like a celebration one running into the next. I have met many families that have had their children go where you are. I always tell them I will ask you to show them around. Hope this is not taking up all of your time. I can't imagine how big it is there. I hope you scare God with your hidding. He deserves a little scare once in awhile. I come home sometimes and laugh at how you always would hide in the same place to scare us. Just a hint maybe you should change it up. I will try to keep myself as busy as possible on the 4th. I think it is harder on the days coming then the actual day. I remember your very first little crying voice. Then when I got to see you I knew I could never love anything ever quite the way I loved you. You brought me a love I never knew my heart could feel. To my surprise it was possible to grow even stronger. I loved your pudgy stage. I had to move your little chubby arms to clean them cause you had so many folds. I have so many great memories with you. I thank you so much for being my son. Thank you for all the love you gave to not just me but all who met you. I miss you like crazy and I wish I could come up there for the day and spend every second holding you. I guess that might make you mad so maybe for my birthday you could ask the big guy. Even though I cry after I dream of you don't stop coming by to say hello. I love being with you even though it is through dream. This life is not long and I look forward to the day you and I get to be together.

PS Your dogs are still just as crazy. We have been calling the beagle sniffers a lot lately since that was what you suggested to call him. He also gets called Puffers because when he gets mad now he puffs his cheeks at you. I know that would crack you up. He also runs up your slide all the time and almost makes it.

Just a little note of love
-Your Mommy-

Tuesday, September 9, 2008 12:38 AM CDT

Alright a hard entry is bound to happen once in awhile. Here it is. Not sure why but these past few weeks are hurting my heart. I can't help but think about Sky being in school. We would be having kids over to spend the night and taking him to soccer practice. Every parent who has lost a child understands these feelings and that just sucks. I want him back so bad. My life would be so different with him still in it. Of course he wouldn't be that kid that wanted to snuggle and be with me all the time. He would run from my kisses and tell me I was a dork now. It makes me smile thinking about his voice changing and liking girls. Then again he always liked girls. What triggered this update was my dream last night. I was in a hospital room (go figure) with Adam. Sky came in all puffy like he just got done with stem cell transplant. He came over to us and gave me a big hug. When I hugged him back he said ow. Even in my dreams he is in pain. I asked him if he needed his medicine and he said no then quickly said yes because he hurt. To brighten the mood up Adam tossed me off the bed in the room and Sky gave one of his big laughes that moved your soul with sunshine. Then I woke up. My dreams are weird because I know he is gone but its like I get to have a little bit of time with him and not tell him that he has been dead. Mixed feelings I am so happy I touched him, heard his voice and especially heard his laugh. On the other hand I have been haunted all day with the fact that he was in pain and he is gone from me. I woke up at 3 am and have not really stopped crying all day. These days are bound to happen but they hurt as bad as the day he left us. When I finally dragged myself out of bed Adam was leaving for work and came up the stairs and said good morning love bug. This is something he never calls me and I always called Skylar my bug (short for love bug). It made me smile. I asked Adam why he said it and he had no clue just came out. Hmmmm wonder if someone is trying to say hello. I ask for you to pray for my family and I. Its coming up to his 8th birthday on November 4th. This time of year was always so fun playing outside. I need some prayers of strength. Also please keep all of these kids and there families in your thoughts and prayers. It is such a hard road. Thanks for checking in.

Friday, May 23, 2008 12:45 AM CDT

Thank all of you for remembering about Sky. I was amazed at all of the people who signed his guestbook yesterday.
It was a hard week but family and friends got me through it. My mind is mean to me sometimes and it decided to let me remember everything that happened each day this week 2 years ago. The hardest part is thinking now that it has been two years since I have touched his skin. I miss combing his hair just to have him get mad at me and pull it straight forward. He was so handsome. It is amazing that babies turn into such beautiful people. I wish I would have taken more pictures although Cathy always tells me I took an extreme amount. I just wish I could have a picture for every moment he was alive. He was such a ham and that smile. You can't help but smile just thinking about his.
As for May 22nd and how we spent it. I was affraid of this day to come and was unsure of how I would spend it. Adam's new job had there golfing tounament which was perfect for him to enjoy. I didn't set an alarm clock and hoped I could sleep the day away. It didn't happen however I did manage to stay in bed until 10am. When I dragged myself out of bed my phone had a message on it from my firend Christy (so glad you were there). She and Ginger decided to take me to P.F. Changs for lunch. Great- so I jogged and showered and Christy picked me up. We shared some Skylar stories and did some much needed laughing. After lunch Christy had a fun idea of going to the casino. We never go there but we thought the environment would keep my head busy. Not much luck we spent a good amount of time on penny slots and left $20 dollars more poor. I then came home and got dressed to meet up with my family at the cemetery. I picked up some ballons and headed there. They showed up one by one and all smiled at Sky's headstone. It really is beautiful. I added some pics of it on the photo page to look at. We all said a few nice words of what we loved about Sky let go of baloons and said the Our Father. This was Skylars bedtime prayer. It was very emotional but I left feeling very proud. Sky was smiling down. After we left we headed to the pizza cafe (thats what Sky called it) Valentinos. It was again good conversation and a great way to spend the day. The end of the night brought many tears to my eyes as I layed in bed thinking of my son. They then dried up as I thought Sky had something to do with the good day that just took place. He is always with me. Sometimes I can't feel it but he is. This life is short and I get to spend eternity with him. I better make him happy with how I spend my time because I know I will have an ear full when I get up there if I don't. Thanks for checking in. I hear the comment I don't update enough so I will try to keep up with this. Hug your family and tell them you love them! God Bless.

Friday, April 11, 2008 10:02 AM CDT

This has been a tough week. Adam's grandfather passed away on Sunday April 6th. He was surrounded by his whole family as he took his last breath. It is amazing how much strength you feel when there is a room full of love. I have not felt so much love since Sky was in the hospital with his family and friends. The wake was Wednesday and it was in the same room and Sky's. This was a very hard step in moving on. I have been thinking I am stronger lately but that tore my heart open. Every time I looked at the front of the room I say my baby shamu laying there. Adam helped me by holding my hand and telling me to look at the floor. I got through it but Skylar has been in my head a lot more this week then the past. The tears once again are flowing. Please give your kids an extra hug for me after reading this. I would do anything to be able to give mine one.
Reading another enrty form a family going through this terrible struggle I came across this peom. I have to leave it to read. Thanks for checking in. It has been almost 2 years and you are all so kind to still care.

"I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

"I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

"To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

"I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

"No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

"I am a woman who had a child with cancer. I will forever walk in these shoes."

- Author unknown

Friday, February 1, 2008 9:58 AM CST

*Please keep the Livers family in your prayers. Their beautiful little Sadie passed away and earned her angel wings @8:15 on February 3rd. Please visit www.caringbridge.org/visit/sadielivers and leave them a kind word.

Alright I know it has been to long. I am going through that state again when I am not quite sure what to write. I used to spend all the time in the world on this typing about my sons treatment but now I feel I am just writting about my life after my son.
January 28th was my 1st year anniversary with Adam. We went out to dinner and and to a movie. Very ususal but at the same time everything we needed. Both of us have been very busy with different things in are lives that we spend very little time together. Next week we head out to Phoenix. This is a little family vacation with his relatives. It will be nice to wear sandals and not worry about a coat.
I miss my little man tons, more like all the time but it has come to a point were it sits in the back of my head instead of in the front. I guess its the way my brain decided how to handle it. His room has been cleaned up. Its very nice to go in and be able to open his windows and lay in his bed. The door was shut for so long and I couldn't bear hanging out in there. I have finally opened the door and have not closed it since. Our dogs go in everyonce in awhile and smell his bed. This tears my heart because my big lab always looks very sad when he comes out. It really makes me feel better to talk to him in there. He past away in our room but we wpent so much time in his during his treatment. All the prayers that were said in there. All the tucking in. It is also been very hard to go up to a snow covered grave. It is to depressing. The nice weather makes me feel better sitting there. The snow makes me feel like he is cold and alone. I know it sounds strange but when it is nice out I feel like he is enjoying his after life more.
A quick story that happened yesturday. I was going to the elevator at Childrens Hospital. Standing and waiting I could hear Skylar's voice say remember mom we are on P3. Right after I heard this two ladies walked in and the only thing they said was remember now we are on P3. It was what I needed. Signs come very rarely lately maybe because I am so busy but it was much needed. I have moments when I hear my little pumpkins voice. Like he is talking inside my head. Sometimes I really believe it is him in some kind of way trying to talk with me. I had a very vivid dream from him the other night where kissing and holding were the whole thing. It was perfect exept when I woke up the rush of it not being real hurt my soul almost as if it were the first day he had left. I miss him and I am living my life the best way I can right now. Thanks for checking in on us. I will try to update a little more often.

Tuesday, December 4, 2007 3:07 PM CST

The past few days have been tough. I feel like I am so close to him but so far away. As any parent who has lost there child I just want to hug and hold him and not let go. To be able to feel his body next to me. To hear him call for his mommy or just watching his favorite cartoons together. The holidays are hard. I have to admit I am better this year than last. Please pray for the families who lost their children this year and for the families who have had to go many years with out them. To everyone else I wish you Happy Holidays. It is always nice to see people still checking in on us.
I was looking over some comments left on a curesearch website. They have a place for parents who have lost children to post and I found this poem that touched my heart. If I could write a poem this is what it would say:

Silent Song
This time of year the words I hear,
A cancer cure is nearly here.
The words come often to late for some,
Another year the damage done.
Another heart is full of pain
And all the efforts are made in vein
A cure a little late you see
For those I hold most dear to me.
You ask if there are darker days
My mind is in a empty haze
I hear the birds that sing the song
They sang the day my son went on
Into a place I can not be
I wait until its time for me. . .
In the silence of the song.

Patti Filion

Copyright �2002 Patti Lynn Filion

Sunday, November 4, 2007 9:28 PM CST

Happy 7th Birthday Skylar!!
I am sure heaven threw you a bash. They are so lucky to have you there.
Adam and I did well today. We planned a quick trip away this weekend. Adam took me to my first Pro football game. What a game it was today. We are big packers fans and they played against the Chiefs. We won 33-22. Great game. Just what we needed. Right when we pulled up and got out of the car the song brown eyed girl was playing. We had a few of these things happen today which lets me know my superman is looking out for us. Not going to spend much time on the computer we are about to go sing Happy Birthday and cut some cake. It will always be a great day of celebration because I got to meet the most precious thing in my life that day. We miss you!!

Sunday, November 4, 2007 9:15 PM CST

Happy 7th Birthday Skylar!!
I am sure heaven threw you a bash. They are so lucky to have you there.
Adam and I did well today. We planned a quick trip away this weekend. Adam took me to my first Pro football game. What a game it was today. We are big packers fans and they played against the Chiefs today. We won 33-22. Great game. Just what we needed. Right when we pulled up and got out of the car the song brown eyed girl was playing. We had a few of these things happen today which lets me know my superman is looking out for us. Not going to spend much time on the computer we are about to go sing Happy Birthday and cut some cake. It will always be a great day of celebration because I got to meet the most precious thing in my life that day. We miss you!!

Sunday, November 4, 2007 9:15 PM CST

Happy 7th Birthday Skylar!!
I am sure heaven threw you a bash. They are so lucky to have you there.
Adam and I did well today. We planned a quick trip away this weekend. Adam took me to my first Pro football game. What a game it was today. We are big packers fans and they played against the Chiefs today. We won 33-22. Great game. Just what we needed. Right when we pulled up and got out of the car the song brown eyed girl was playing. We had a few of these things happen today which lets me know my superman is looking out for us. Not going to spend much time on the computer we are about to go sing Happy Birthday and cut some cake. It will always be a great day of celebration because I got to meet the most precious thing in my life that day. We miss you!!

Friday, September 14, 2007 10:30 AM CDT

* As of 8:45pm on 9-19-07 Tanner is now playing in heaven with Skylar. Please visit her site and let her family know you are thinking of them. http://www.tannerville.com/

Finally the season is changing. I was so tired of the heat. It feels good to get out and take a walk with out passing out when you get home. Football season has taken over the house. Adam is so excited about football 24/7. It is not my favorite thing but it is fun to see Adam smile that much. Speaking of Adam he changed jobs and is now the Head man for A Heating and air. He starts on the 17th and is very excited. It is nice to have a change every once in awhile.
September is chldhood cancer awareness month and we are trying to spread the word. We have our annual Angels Among Us event coming up November 17th called Calling All Angels. It is a little different then last years. A little more upscale. It is still the silent/live auction but plates will be going for $100.00. We are doing well at getting companies to sponsor whole tables for $1000.00. I can't wait for the event because the money is so needed. We started helping 6 families last November and now are up to 28. We get new applications in weekly and the word needs to be spread to people to now how much this is needed. If you or someone you know wants to make baskets to donate please contact us at 934-0999. Also if you would like to attend the event give us a call.
I am having a hard time of course missing my little pumpkin. I am around a lot of people who have children and the pumpkin patch keeps getting brought up. That is always tuff. I want to act like its ok but then when I get out of a situation like that I cry. Crying is still a daily routine but some days it is harder then others. The first day of school was one of them. I didn't think about it and of course drove by what would have been Sky's school while all the parents were walking there kids there. I had to pull over in a parking lot and breath because it felt like my body was dying. Things like that parents should never experience. I wanted to yell out don't you know my son is dead and you all look so happy. I know I would never do that but I feel like others should know. I do think having a baby could help this because it would let me enjoy things like this. I will be excited to see them enjoy stuff. Instead of being so sad I will miss Sky but be able to enjoy it too. I am getting ready for the idea of another child and will talk about there brother to them all of the time. Not that I am going to try tomorrow but at least the thought of it isn't hurting me anymore.
Please everyone go to tannerville.com and check in our our friend Tanner. Their family really needs prayers. It is so hard to see families going through what we did. Life should never have to be lived without your children.
Please keep Sky in your conversation's. He loved being the center of attention. Keep leaving comments I enjoy reading them and pray for these families. -Kelly-

Friday, July 27, 2007 9:18 AM CDT

We made it past the first year and it is not much different. The pain is still very real and every morning I still wake up to the thought of no hugs and kisses. Since Angels Among Us has moved into an office I have been able to keep myself very busy. This is a great blessing. I am now out of the house everyday and I can breath a little better. Depression makes you want to stay home but getting out is the key. At least for me it is. I still have great pictures of Sky all over the office to look at him. Now I have people to occupy me when I get down. So I guess I am doing a little better. Wow weird to say but these last few weeks I've been feeling more important again. Helping these families really makes me feel good.
On another note my sister in Maryland is having a baby girl in November and my other Sister's little man Lucas just turned 1 on July 5th. So it has been fun being the Aunt and spoiling them. I know Adam and I plan to have kids. It just may be a year or two until we are ready. We are enjoying being newlyweds and sleeping in on the weekends.
It has been forever on getting Sky's headstone ready but we finally found the right place to do it and it has gotten started. That is such an end and I just could never find the right place that understand's what I need and how important it was to me. The neat thing is the place is called Moon and Sun memorial. Being that moon was Sky's middle name I new I found the right place. I will of course let everyone know when it gets done and show pictures.
Please keep up with Angels Among US web site we have all of our up coming fundraisers posted. Go to www.myangelsamongus.org to check it out.
Our friend Shelly's little girl Lily just relapsed with AML please go give her some kind words. Visit lilyleyden@caringbridge. Thanks for still checking in. I don't know how long I will keep this up but I am sure not ready to let it go yet. I really thank everyone for still checking in. The pain never goes away and it is always nice to know people are thinking of our little man. God Bless!

Friday, July 27, 2007 9:18 AM CDT

Monday, May 21, 2007 10:22 AM CDT

One year tomorrow. If I let myself dwell on this thought it makes me crazy. I used to have a hard time when Sky would go over to Grammy's for the weekend. Now it has been a year. To feel his little arms give me a tight squeeze once more. You don't see the changes as you move along but looking back I know I am stronger. I could not have imagined making it hear a year ago. My family and friends have been such a support. Lately I have had days were I just feel glad to be alive again. I feel as if Sky is sitting next to me holding my hand. I feel as if sometimes he lives through me. It is hard to explain but the energy somedays is something I have never felt until recently. He is defenitly my Angel Among Us!
As most of you know Adam is taking me to Yellow Stone in the morning. We are leaving bright and early. What a great way to spend this day. I have hours of being with my husband and talking about hansom Sky. We are meeting up with my friend Beth in Fort Collins Tuesday night so that will bring even more good times to the day. This is such a great time to get away. Nature brings him even closer. To see how beautiful things are all around us. I know it will be hard but I have made it through worse.
As for the spaghetti feed last night. What a great time. Thanks to all who helped bake for the event and all of those who attended. We could not be helping these families if it wasn't for you. All of the kids looked great with their faces painted. I wish I had more time to talk with everyone but just seeing all of you made my night great. Of course we turned the radio on for the cake walk and brown eyed girl started playing. Thanks Sky it brought a smile to my face. I know you would have been in those bouncy houses all night. We all miss you so much! Thank you for checking in on us and remembering our little superman this week. Talk about him as often as you can. He was such a little ham I am sure he enjoy's hearing the stories. Say an extra prayer for us to get through tomorrow. As always keep all of these kids in your prayers too. Kelly

Please remember... The MileStones walk for CureSearch is June 9 at Village Point. The team in memory of Sky is "Reach for Sky". If you'd like to donate or join the team go to www.milestoneswalk.org. I know Sky will be there with us every step of the way. Thanks Cris

Friday, April 27, 2007 11:42 AM CDT

May 16..The MileStones walk for CureSearch is June 9 at Village Point. The team in memory of Sky is "Reach for Sky". If you'd like to donate or join the team go to www.milestoneswalk.org. I know Sky will be there with us every step of the way. Thanks Cris

Spring brings such a great feeling of new life. I love to be able to be outdoors. Yet when I go outside all I see are families playing with there children. None of them knowing what we have been through. Sometimes it is so hard I will lock myself inside for the rest of the day. I am finding myself saying over and over stay strong, you know Sky wants you to be happy. Keeping myself busy with Angels Among Us definatly helps but having to see these families going through the same thing as we did then to see them loose a child brings back so many hard memories. I love helping them but I wish there was no need for what we do. I pray that childhood cancer goes away. When I find myself thinking about having another child I get struck with what if's. However I would take every bit of Sky's life over again if I could. I was blessed to have such a perfect child. I find myself praying thank you's to Jesus for letting me raise Sky instead of why's all the time. The why's are still there but I am so happy he was my son. The year mark of him passing is May 22nd. Just around the corner. I am finding this time of year very hard. They say the first year is the hardest and each day coming up to the 22nd gives me more and more anxiety. Please say a few prayers for my family and friends to get through this next month. Maybe May 23rd I will be able to breath normal again.
Adam and I are planning our Yellow Stone trip for the begining of June. That gives us something to look forward to. Last year it was so nice because there are so many things always going on when your child first passes away and going to Yellow Stone meant no phone. No one to Know your troubles and a whole lot of Gods beautiful creations to look at. As you can tell I am excited. Also I have joined my first softball league. Last night was my first game and I stubbed my thumb and had a ball hit me directly in my hip. It is a huge battle wound but I like it. Its fun to put everything aside and just enjoy life.
For those of you who are looking for upcoming events for Angels Among Us we are having a spaghetti feed May 20th. The link to the web site is below and just click on our events site. Or feel free to email me at KellyWalsh@myangelsamongus.org for more info.
Please keep up prayers for these kids fighting this hard battle. God bless!

Friday, April 27, 2007 11:42 AM CDT

Thursday, March 22, 2007 9:37 AM CDT

Sky I am missing you so much lately. Around this time last year we were headed out for our make a wish trip. It was so much fun. I am so blessed to have had you for the time I had. All of your pictures are so beautiful. Even when I go through your treatment pictures you always tried to have that great smile. It has been 10 months today without you. I hope you watch over your aunt Jenny since we just found out she is having a little baby. I can't help but cry when I talk to you because my soul is so empty with out you. I know you hated it when I cried but it is just so hard. You always said if you passed away you would be an angel on our shoulders and thats why when I talk to you I look at my shoulder a lot. Your room is so hard to go into. I always rub the bed where your legs were because the last few months when you layed around sick that was one thing that made you feel better. I have wrapped your piggy and sky moon dog up in your nanny blanket so they are safe like you always wanted. I can still hear you telling me mommy you look beautiful on those days I can't find anything to wear or my hair doesn't work. It still makes it much better. My heart is aching so much lately. It has just been to long. Please always stay near. Watch over all of these families who are going through this same terrible rollercoaster ride. All though it was tough you made it so much easier being so perfect. Thanks for being my son. You changed my life and made me a better person. I can't wait to see the house you have waiting for us there. Tell all of your little angel friends I say hello and will love to meet them on the greatest day ever. Love always and always-Mommy.

Thursday, March 22, 2007 9:37 AM CDT

Monday, February 5, 2007 2:27 PM CST

IT IS TRUE. ADAM AND I WENT TO VEGAS AND GOT MARRIED! IT WAS A COMPLETE SURPRISE TO ME. ADAM PLANNED THE WHOLE THING A FEW WEEKS EARLIER. ONE NIGHT WHILE WE WERE THERE HE GOT BACK DOWN ON HIS KNEE AND PULLED OUT MY WEDDING BAND ALONG WITH HIS. THEN RE-ASKED ME FOR MY HAND IN MARRAGE. IT WAS VERY CUTE AND ROMANTIC. THE RING WAS PERFECT AND OF COURSE I WAS UP FOR THE IDEA. WE SPENT A FEW HOURS ONE DAY PLANNING THE CHAPEL AND FINDING A DRESS AND TUX FOR RENTAL AND IT ALL CAME TOGETHER. THE PICTURES AND THE DVD TURNED OUT GREAT. OUR FAMILIES COULD NOT BE HAPPIER. THERE WERE A LOT OF SIGNS DURING THE TRIP FROM OUR LITTLE GUY. ONE OF WHICH WAS EVERYWHERE WE WENT THE SONG BROWN EYED GIRL CAME ON. THIS IS WHAT SKY ALWAYS SANG TO ME WHEN DREW AND HIM SANG UP AT CHEESBURGER IN PARADISE. DURING OUR CEREMONY WE LIT A CANDLE FOR HIM. IT HAS BEEN NICE HAVING ALL OF THIS POSITIVE ENERGY WITH ME. I ENJOY THE PHONE CALLS AND NICE EMAILS BEING FILLED WITH JOY INSTEAD OF SADNESS. I KNOW SKYLAR COULDN'T BE HAPPIER WITH US FINALLY TYING THE KNOT. I PUT SOME PICTURES OF THE WEDDING UP. THANKS FOR CHECKING IN ON US. MY DAD IS DOING WELL RIGHT NOW SO THANKS FOR THE EXTRA PRAYERS.
AS FOR ANGELS AMONG US WE ARE IN THE PROCESS OF PLANNING OUR YEARLY FUNDRAISER AND WE SET NOVEMBER 17TH AT THE GEORGETOWN BALLROOM. I WILL UPDATE WHEN WE GET CLOSER TO THE DAY. KELLY

Friday, January 5, 2007 10:53 AM CST

HAPPY NEW YEAR EVERYONE. WELL WE MADE IT THROUGH THE TOUGH SEASON AND WE DID PRETTY WELL. THE TRIP TO TEXAS WAS NICE AND RELAXING. WE STAYED AT THE HYATT IN AUSTIN AND SAN ANTONIO. THEY WERE BOTH RESORTS AND HAD LOTS OF ACRES TO WALK. EVERY PLACE HAD A GREAT GYM (REALLY HELPS ME RELEASE STRESS). WE GOT UP LATE ALMOST EVERY DAY AND DID WHATEVER WE WANTED, NO SET SCHEDULE. WE DID MANAGE TO GET OURSELVES OUT TO GO HORSEBACK RIDING AND IT WAS SO PEACEFUL. ALL OF OUR HORSES SEEMED TO HAVE A LITTLE ATTITUDE BUT IT WAS FUN GETTING TO SEE TEXAS AND ITS BEAUTY. ONE NIGHT I WAS WALKING DOWN THE HALLS OF THE HOTEL BY MYSELF THINKING ABOUT SKY AND SILENT NIGHT CAME OVER THE HOTEL RADIO. I GOT SHIVERS DOWN MY SPINE AND SAT IN A CHAIR SMILING THINKING HE MEANT FOR IT TO HAPPEN. I LOVE WHEN IT PUTS A SMILE ON MY FACE AND I DONT BREAK DOWN. NEW YEARS WAS HARD. I REALLY DON'T HAVE TO EXPLAIN WHY. STARTING A NEW YEAR MEANS I HAVE BEEN WITHOUT HIM FOR TO LONG. I DID MANAGE TO OPEN A BOTTLE OF CHAMPAGNE AT MIDNIGHT THOUGH.
ON ANOTHER NOTE. MY DAD HAS BEEN VERY ILL AND IN THE ICU FOR A FEW WEEKS. I WOULD LOVE IF EVERYONE COULD SAY AN EXTRA PRAYER FOR HIM TO RECOVER. HE IS GETTING OLDER AND HIS BODY ISNT BEHAVING. I AM SURE MY MOM IS DOING ENOUGH OF THE PRAYING BUT IT COULDN'T HURT.
I HOPE EVERYONE HAD A GREAT HOLIDAY SEASON AND STAYED SAFE. IT IS ALWAYS NICE TO HEAR A STORY ABOUT SKY SO IF YOU WANT TO LEAVE A LITTLE MESSAGE TELLING US OF A MEMMORY I WOULD APPRECIATE IT. THANKS FOR CHECKING IN. KELLY

Friday, January 5, 2007 10:53 AM CST

Tuesday, December 5, 2006 3:02 PM CST

I ADDED SOME PHOTOS OF SKY FROM AROUND THIS TIME LAST YEAR.

I HOPE EVERYONE IS HAVING A GOOD HOLIDAY SEASON. WE ARE TRYING TO JUST GET THROUGH THEM THE BEST WE CAN. I WISH I COULD SAY WE ARE ALL DOING WELL BUT AS FOR MYSELF THIS SEASON IS PRETTY TERRIBLE. I CANT GO INTO A STORE OR TURN ON THE RADION WITH OUT HEARING CHRISTMAS SONGS. NORMALLY SKYLAR WOULD BE SINGING HIS HEART OUT WITH THE MUSIC AND TELL ME TO SING WITH HIM. SILENT NIGHT OF COURSE IS THE HARDEST. AS MOST OF YOU KNOW THAT WAS HIS FAVORITE SONG. EVERY NIGHT SINCE HE WAS BORN I SANG IT TO HIM. SINCE HIS BIRTHDAY WAS IN NOVEMBER I SANG IT TO HIM AND THEN IT ALWAYS PUT HIM TO SLEEP SO I KEPT IT UP EVEN AFTER CHRISTMAS. THEN WHEN HE WAS OLD ENOUGH TO TALK HE ALWAYS HAD ME SING IT TO HIM WHEN HE WAS TIRED OR SCARED. THEN IT JUST BECAME PART OF HIS BEDTIME ROUTINE. SOMETIMES WHEN I HEAR IT I SMILE THINKING I TURNED IT ON BECAUSE SKY WAS WANTING ME TOO. OTHER TIMES I HAVE TO TURN IT OFF BECAUSE IT HURTS TOO MUCH. MY BIRTHDAY IS ON THE 14TH SO I AM STARTING TO GET DOWN WHEN EVER I THINK ABOUT IT BECAUSE HE ALWAYS LOVED SPECIAL DAYS. I CAN'T IMAGINE NOT HAVING MY BIRTHDAY HUG. THANKS TO ADAMS FAMILY 2 YEARS AGO THEY MADE ONE OF THOSE PICTURE FRAMES THAT YOU CAN SPEAK INTO AND IT TAPES SOMETHING. THEY GOT HIM TO SAY HAPPY BIRTHDAY MOMMY I LOVE YOU AND YOUR BEAUTIFUL AND SWEET. SO EVERY BIRTHDAY I GET TO LISTEN TO HIS VOICE. I MISS HIM LIKE CRAZY.
FOR CHRISTMAS ADAMS FAMILY AND I ARE GOING TO TEXAS. WE JUST NEEDED SOMETHING TO DO AND DECIDED TEXAS SOUNDED FUN. WE WILL BE ROAD TRIPPING FOR ABOUT A WEEK. I THINK IT WILL HELP. THE NORMAL TRADITION SEEMS WAY TO HARD TO CHANGE BUT NOT BEING IN THE HOUSE FOR CHRISTMAS SHOULD HELP. IT MAY SEEM LIKE WE ARE RUNNING AWAY AND THAT IS EXACTLY IT. I HOPE NEXT YEAR I CAN TAKE OUT HIS ORNAMENTS AND PUT THEM UP ON THE TREE AGAIN BUT THIS YEAR IT IS JUST TO HARD.
PLEASE PRAY FOR ALL OF THE FAMILIES WHO ARE LIVING THE ROLLERCOASTER LIFE WITH THEIR CHILDREN AND OUR IN AND OUT OF THE HOSPITAL FOR CHRISTMAS. ALSO PRAY FOR THE FAMILIES WHO HAVE TO HAVE THEIR FIRST CHRISTMAS WITHOUT THERE LITTLE ONES. IF I DON'T WRITE BEFORE CHRISTMAS HAVE A HAPPY ONE. WRITTING IS ALWAYS GOING TO BE DIFFICULT BECAUSE IT MAKES YOU THINK ABOUT HOW YOU ARE DOING AND IT WILL NEVER BE THE SAME. GOD BLESS. KELLY

Thursday, October 26, 2006 11:48 AM CDT

HAPPY BIRTHDAY SKY!!! WE LOVE YOU AND MISS YOU!!!!!!!

I KNOW IT HAS BEEN FOREVER SINCE I UPDATED BUT WHEN I SIT DOWN TO WRITE IT JUST GETS TO HARD SOMETHIMES.
I HAVE BEEN NICE AND BUSY TRYING TO GET THINGS SET UP FOR THE ANGELS AMONG US FUNDRAISER. WE HAVE SO MANY VOLUNTEERS IT IS A GREAT THING TO BE INVOLVED WITH. THERE ARE SOME TIMES THAT IT GETS HARD PUTTING MYSELF BACK INTO THE LIVES OF FAMILIES BATTELING CANCER BUT I KNOW SKYLAR LOVES SEEING ME HELPING OTHERES. JUST TO REMIND EVERYONE THE FUNDRAISER WILL BE NOVEMBER 10TH AT THE MILLARD PLAZA BALLROOM, FROM 6-10PM.
I GUESS YOU CAN SAY THINGS ARE GETTING A LITTLE EASIER. I WENT FROM ALWAYS CRYING ABOUT MEMORIES TO SMILING ABOUT THEM THEN CRYING. AT LEAST I HAVE THE SMILING NOW. MY FRIENDS AND FAMILY ARE VERY GOOD AT KEEPING ME BUSY. I JUST GOT BACK LAST WEEK FROM VISITING MY SISTER IN MARYLAND. WHAT A BEAUTIFUL PLACE MARYLAND IS ESPECIALLY IN THE FALL. WE SPENT A LOT OF TIME SHOPPING TAKING WALKS AND HAVING A FEW TO MANY TO DRINK. IT WAS PERFECT! JUST WHAT I NEEDED TO FEEL MY AGE AGAIN.
EVERYONE ELSE IS DOING JUST AS WELL. WHILE I WAS OUT OF TOWN ADAM REFINISHED OUR WOOD FLOORS, PUT NEW TILE IN THE SHOWER AND MOVED MY OFFICE TO THE BASMENT SO I WORLD HAVE MORE ROOM. CRIS AND ERIN TOOK SKY'S COUSINS TO A SURPRISE VISIT TO DISNEYLAND THIS WEEK. I AM SURE THEY ARE ENJOYING SEEING THE CHILDREN LAUGH. I TALKED WITH DREW LAST NIGHT AND HE ALSO IS DOING WELL. HE IS ENJOYING HIS NEW JOB AND PLAYING HIS MUSIC. THERE ARE SO MANY FAMILY MEMBERS THAT WERE TOUCHED BY SKY I COULD GO ON AND ON. I JUST WANTED EVERYONE TO KNOW WE ARE MOVING ON IT JUST TAKES TIME.
I HOPE TO SEE ALL OF YOU AT THE EVENT AND IF NOT I STILL CHECK DAILY ON THE SITE TO SEE WHAT EVERYONE HAS TO SAY. THANKS FOR ALWAYS KEEPING US IN YOUR PRAYERS. KELLY

Monday, September 11, 2006 2:37 PM CDT

WE HAVE BEEN KEEPING OURSELVES VERY BUSY. I AM NOW ON THE BOARD OF DIRECTORS FOR ANGELS AMONG US. THIS IS A NEW FOUNDATION THAT HELPS FAMILIES PAY THERE BILLS WHILE THERE CHILDREN ARE GOING THROUGH TREATMENT. WHEN A CHILD IS DIAGNOSED SO MANY FAMILIES HAVE TO MAKE THE DESISION TO HAVE ONE PARENT QUIT WORKING. WITH ALL OF THE HOSPITAL STAYS AND EMERGENCY VISITS. IT IS SO HARD TO LEAVE YOUR CHILD WHEN THEY ARE SO SICK AT HOME. WE ARE HOPING THIS WILL LESSEN THE STRESS OF EVERYDAY BILLS AND MEDICAL BILLS. IF YOU ARE INTERESTED IN GOING TO THE WEB SITE VISIT MYANGELSAMONGUS.COM. WE HAVE A FUNDRAISER COMING UP ON NOVEMBER 10TH. WE ARE GOING TO HAVE SOME OF THE KIDS FIGHTING THE FIGHT AND THERE SIBLINGS DOING A FASHION SHOW AND THERE WILL ALSO BE A SILENT AUCTION AND LIVE AUCTION THAT NIGHT FROM 6-10PM. PLEASE KEEP IT IN YOUR PLANNERS.
AS FOR WORK I COULD NOT IMAGINE GOING BACK TO THE HOSPITAL AFTER ALL OF THIS SO I MET SOMEONE WHO GOT ME INTERESTED IN MARY KAY. IT IS GREAT FOR ME BECAUSE IT KEEPS ME BUSY AND ALL OF THE WOMEN I HAVE MET THROUGH THE COMPANY ARE AMAZING. THERE IS ALWAYS SOME ONE TO GIVE OUT A HUG OR PRAISE YOU FOR YOUR WORK. ANOTHER REASON IT IS GOOD FOR ME IS A LOT OF THE PEOPLE DON'T KNOW WHAT HAS HAPPENED SO I AM NOT GOING TO WORK HAVING EVERYONE REMIND ME OF WHAT HAS HAPPENED. IT IS ALWAYS ON MY MIND BUT SOMETIMES IT IS GOOD TO HAVE MY MIND ON OTHER THINGS.
AS FOR THE REST OF THE FAMILY EVERYONE IS STILL ADJUSTING. WE ALL MISS HIM LIKE CRAZY BUT WE HAVE GONE THROUGH THE NOT BEING ABLE TO GET OUT OF BED STAGE TO THE WHENEVER WE TALK ABOUT HIM WE CRY. EVEN IF IT IS GOOD MEMORIES IT IS HARD BECAUSE YOU SMILE THEN YOU CRY BECAUSE IT IS ALL STILL SO NEW. WHAT A LITTLE FIGHTER HE WAS. THE BATTLE HE HAD EVERY MINUTE OF HIS LIFE. HE WAS A SAINT EVEN BEFORE HE PASSED AWAY. PLEASE EVERYONE THINK OF ALL OF THESE KIDS FIGHTING AND THE FAMILIES THAT ARE WITHOUT THERE CHILDREN. WE ALL CAN USE SOME EXTRA PRAYERS. AS ALWAYS I LOVE CHECKING YOUR MESSAGES AND I CAN'T THANK YOU ENOUGH FOR ALL OF THE SUPPORT THROUGH THESE PAST FEW MONTHS. KELLY

Tuesday, August 22, 2006 11:58 AM CDT

THREE MONTHS TODAY WITH OUT HIM. LIFE HAS REALLY CHANGED. EVERY MORNING I STILL GET THE STABBING PAIN OF KNOWING BUT IS ISN'T AS DEEP. I HAVE FINALLY STARTED WORKING AGAIN. IT REALLY DOES HELP TO HAVE SOMETHING TO GET YOU OUT OF BED EACH DAY. I AM HAVING TROUBLE WITH UPDATING SO LET ME JUST WRITE WE REALLY MISS HIM AND THANKS FOR ALL OF THE NICE ENTRIES. KELLY

Thursday, July 20, 2006 12:11 AM CDT

August 5....Please say extra prayers for Joey Thompson and stop by his website (visit/joeythompson) to give his family needed support. Joey is at UNMC for stem cell recovery. Thanks for your prayers and support for our family. I can't begin to say how much we miss our sweet Sky. Cris

NEW PICTURES!

IT IS ALMOST TWO MONTHS SINCE I HAVE BEEN WITH MY SON. THE DAYS TEND TO KEEP GETTING HARDER. THERE ARE A FEW DAYS THAT I FEEL STRONG AND WHEN I THINK ABOUT HIM I SMILE. THE REST OF THE DAYS ANY LITTLE THOUGHT MAKES ME WANT TO CRAWL IN BED AND CRY. THIS IS THE MOST HORRIBLE THING THAT COULD HAPPEN. I GUESS ONE GOOD THING FROM THIS IS I AM NOT AFFRAID OF DEATH. I TOLD ADAM IF HE DIES BEFORE ME I WANT ONLY THEM TWO GREET ME WHEN I GET TO HEAVEN. EVERYONE ELSE NEEDS TO WAIT BECAUSE I HAVE A LOT TO TALK ABOUT WITH MY LITTLE MAN AND I CAN'T WAIT FOR HIS SMILING LITTLE FACE RUNNING UP TO ME SAYING MOMMY OUT LOUD. ADAM SAYS THE WAY HE PICTURES IT IS SKYLAR WILL BE HIDDING AND GIGGILING SOMEWHERE AND HE WILL HAVE TO FIND HIM.
LIFE IS REALLY TOUGH RIGHT NOW AND MAN DEPRESSION IS A HARD THING TO DEAL WITH BUT ON A BRIGHTER SIDE ADAM AND I ARE TRYING TO FIGURE OUT WHEN TO GET MARRIED. YEAH IT IS ABOUT TIME. THIS DECEMBER WE WILL HAVE BEEN TOGETHER FOR 5 YEARS. ADAM ASKED ME TO MARRY HIM THE DAY I BOUGHT THE HOUSE. WE MOVED ALL OF OUR STUFF ALL DAY AND SKY WAS SPENDING THE NIGHT OUT SO WE COULD GET A LOT DONE. LATE THAT NIGHT WE WERE EXHAUSTED AND SITTING AT OUR FOLD DOWN TABLE EATING CHIPS AND ADAM CAME OVER MOVED OUT MY CHAIR AND GOT ON HIS KNEE. HE TOLD ME HE DIDN'T WANT TO SPEND ONE DAY IN OUR NEW HOME TOGETHER WITH OUT BEING ENGAGED. OF COURSE THERE WAS A LOT ELSE SAID BUT I SAID YES AND HERE WE ARE ALMOST 3 YEARS LATER STARING TO PLAN IT. IT GIVES ME SOMETHING TO SMILE ABOUT. ADAM IS THE MOST HONEST MAN I HAVE EVER MET. EVERYTIME I THINK ABOUT MARRYING HIM I SMILE. I KNOW SKYLAR IS EXCITED ALSO. HE ALWAYS TALKED ABOUT US GETTING MARRIED AND WOULD LAUGH BECAUSE HE THINKS SMOOCHING IS INVOLVED. I MISS HIS LAUGH AND HOLDING HIM. I MISS PLANNING THINGS WITH HIM. IF YOU WOULD LIKE TO DO ANYTHING FOR US JUST PRAY WE START GETTING STRONGER WITH EACH DAY. I CAN REALLY USE STRENGHTH! THANKS FOR CHECKING IN ON US AND KEEP ENJOYING THE HOT WEATHER. YUK. KELLY

Monday, June 26, 2006 9:28 PM CDT

I CAN'T WRITE LONG BUT IT HAS BEEN AWHILE SO HERE IS A LITTLE UPDATE. LIFE IS HARD!!! IT ALMOST SEEMS LIKE REALITY ISN'T REALITY ANYMORE. PEOPLE ARE ALWAYS SO BUSY. I WANT TO STAND UP IN CROWDS AND YELL GRAB YOUR CHILDREN. PICK THEM UP AND KISS THEM. NEVER STOP TAKING PICTURES OR TAPING THEM. EVERYDAY IS PRECIOUS. I WANT SO BAD TO BE TAKING CARE OF MY SON. I WANT TO GIVE HIM BATHS AND MAKE HIM DINNER. I WANT TO COME HOME AND HAVE TO FIND HIM HIDDING SOMEWHERE. I WANT TO NOT LOOK AT EVERY SINGLE PICTURE IN MY HOUSE AND CRY. HOW IS HE AND WHO IS TAKING CARE OF HIM? I KNOW HE IS WITH GOD BUT WHAT IS HE DOING EVERYDAY? I CAN'T HELP BUT CRY THE WHOLE TIME I HAVE BEEN WRITING. IT ISN'T ALWAYS LIKE THIS BUT WHEN YOU ARE DOWN YOU ARE DOWN. I AM SO THANKFUL FOR GOD CHOOSING ME TO BE HIS MOMMY. I KNOW HE IS NO LONGER IN PAIN BUT I CAN'T HELP WANTING HIM BACK SO BADLY.
I NEED TO TAKE A BREAK FROM THE COMPUTER. I DO WANT TO THANK EVERYONE FOR THE SUGGESTIONS ON SKYLARS ROOM. I THINK WE HAVE DECIDED TO GET A STORAGE UNIT AND PUT EVERYTHING INTO IT OF HIS UNTIL WE ARE READY. I TRIED CLEANING HIS STUFF UP BUT IT WAS A HUGE DISASTER. I THINK I USED A WHOLE BOX OF KLEENEX IN 10 MINUTES. I KNOW THINGS WILL GET BETTER. OH YA I ALMOST FORGOT WHEN WE GOT HOME FROM YELLOW STONE OUR NEIGHBORS AND ADAMS BROTHER PAINTED OUR HOUSE! IT LOOKS AMAZING. WHAT A SUPRISE IT WAS. KYLE, ADAMS BROTHER HAD HEARD ME SAY I WOULD LIKE TO HAVE THE SAME COLOR AS MY PARENTS HOUSE AND THERE IT WAS. A PERFECT BLUE. THANKS TO ALL OF YOU WHO HELPED. IT WAS A REALLY HARD DAY COMING HOME AND THAT PUT A GREAT SMILE ON OUR FACES. HAVE A GOOD WEEK EVERYONE AND KEEP PRAYING TO SAINT SKYLAR I KNOW HE ENJOYS IT. KELLY

Monday, June 19, 2006 11:30 AM CDT

ADAM AND I ARE FINALLY HOME. IT WAS THE MOST RELAXING VACATION I HAVE EVER TAKEN. YELLOWSTONE IS THE MOST BEAUTIFUL PLACE I HAVE EVER BEEN. WE STAYED THERE FOR ABOUT 8 DAYS THEN HEADED BACK TO THE BLACK HILLS AND SPENT A FEW DAYS THERE. WE SAW WATERFALLS, HOT SPRINGS, MUD POTS, BEARS, MOOSE, BEAVERS. WE REALLY SAW EVERYTHING WE COULD. I THINK WE MAY TRY TO TAKE THIS TRIP EVERY YEAR. WE DID A LOT OF TALKING TO SKY LIKE HE WAS RIGHT THERE THE WHOLE TIME. IT DID HELP TO NOT BE HOME AND TO BE SOMEWHERE THAT THERE WASN'T EVERY LITTLE TOY AND PICTURE AROUND TO REMIND US OF WHAT WAS GONE. OF COURSE I WOULD START CRYING OUT OF THE BLUE AND ADAM WOULD BE THERE TO COMFORT ME. IT SEEMED WHEN ONE OF US WAS DOWN THE OTHER WAS OK AND WOULD WALK YOU THROUGH IT. COMING HOME WAS REALLY HARD FOR ME. THE DRIVE HOME WAS REALLY RAINY AND IT SEEMED TO NOT HELP MY SPIRITS. KNOWING THAT WHEN WE GOT HERE THERE WOULD BE NO KISSES OR HUGS READY WHEN WE WALKED IN THE DOOR. KNOWING THAT THE CLOSED DOOR TO HIS ROOM WOULD HAVE TO BE OPENED AND CLEANED. I HAVE A COMPLETE HOUSE RENEVATION TO DO AND I DON'T KNOW HOW TO START. I CAN SEE WHY PEOPLE NEVER TOUCH A ROOM AFTER SOMEONE DIES. THIS WHOLE HOUSE HAS SO MANY MEMORIES. I BLOW A KISS TO HIS BEDROOM DOOR AT NIGHT BEFORE BED BECAUSE IF I GO IN THE ROOM I BREAK DOWN. ADAM GOES BACK TO WORK ON THURSDAY AND I THINK I MIGHT GO TO THE GYM FOR THE WHOLE DAY SO I AM NOT ALONE. MAYBE THIS WEEKEND I WILL GET TO HIS ROOM. IF ANYONE HAS GOOD IDEAS OF HOW TO GO ABOUT CLEANING THE ROOM PLEASE LET ME KNOW. IT IS ONE OF THOSE THINGS I KEEP PUTTING OFF BUT I THINK I WILL FEEL BETTER WHEN IT IS DONE.
I WOULD LIKE TO THANK EVERYONE FOR BEING HERE FOR US. ALL OF THE NICE MESSAGES AND EMAILS ARE VERY ENCOURAGING. KELLY

Wednesday, June 7, 2006 7:05 PM CDT

Update Tuesday, June 13...If you have Skylar stories or remember a special something about him, please post it or email me at cris1966@cox.net...I'd like to put books together for Kelly and Adam and Drew. I know they'll love reading about and remembering all the good times. Maybe someday they will share them with Sky's brothers and sisters too!! I've put a few of my favorite baby pics of Sky up, you can see he had his 1000 watt smile even then...I'll post new ones every couple of days. Please keep up the prayers for Joey (visit/joeythompson) and for Ryan (ne/ryan). Kelly and Adam should be heading home tomorrow.

Kelly and Adam left yesterday on their trip to Custer National Park and Yellowstone. I'm certain this trip will help them heal by just being alone. The majority of their relationship has been filled with doctors, hospitals, & especially cancer...that in itself speaks volumes for how much Adam loves Kelly and Skylar. We are all trying to get back to what we remember as normal life, I half expect Sky to walk through my door saying "where's my dad"...Drew always hid so Sky would have to find him. Sky loved to play hide and seek. I've been reading to Sky while Kelly's gone and telling him stories about "Saint Sky" and how he helps various super heros save the world. I hope I can remember the stories, he always gets mad when I forget parts. I miss his hugs and sweet kisses so much.

Gus, Drew, and I would like to take this opportunity to thank everyone for the beautiful flowers, kind, comforting words, and your wonderful "Skylar" stories. Thank you for laughing and crying with us. Thanks to Liz Larson for the beautiful pictures of Sky, they absolutely capture his personality. We will cherish them forever. Special thanks to all of Sky's friends on our block for naming a star for sky. This summer we'll all have to look at night for "SKYLAR MOON BERRY", just under the little dipper.

I'm going to post pictures of Sky every couple of days starting when he was born...but today I have some VERY special pics to post. Kelly emailed them to me before she left. They were taken at Kelly's aunt's the night of Skylar's funeral...Kelly was holding her cousin's baby. These are the only pictures taken that night that came out this way ....Kelly named them Skylar checking in...after you see them, you'll have no doubt he was there. I think the one of Kelly alone holding the baby with Skylar's energy all around her is one of the most beautiful pictures I've seen.

Thanks again for all of your support and prayers. Cris (forever Sky's grammy).

Please don't forget to pray for Joey's speedy recovery.

Thursday, June 1, 2006 11:08 PM CDT

THE SOCCER GAME WAS A GREAT HIT TONIGHT. THANK YOU BRIAN FOR PUTTING ALL OF THAT TOGETHER. I AM SURE SKYLAR WAS SMILING DOWN THE WHOLE NIGHT. ALSO THANKS EVERYONE FOR THE EXTRA PRAYERS FOR JOEY THOMPSON HIS SURGERY WAS A GREAT SUCCESS.
WE ARE GETTING READY FOR THE IN THE ARMS OF FRIENDS WALK SATURDAY AT 8AM AT VILLAGE POINT. IF ANY ONE IS INTERESTED IN WALKING JUST SHOW UP. I AM SURE IT WILL BE VERY ENJOYABLE. THAT CROWD OF PEOPLE ARE ALWAYS SMILES.
AS FOR HOW WE ARE. ADAM AND I ARE TRYING TO LEAVE NEXT TUESDAY FOR A LITTLE ALONE TIME. SINCE WE HAVE BEEN TOGETHER WE HAVE NEVER REALLY DONE ANY THING ALONE. WE ARE PLANNING A ROAD TRIP OVER TO OREGON, WITH MANY STOPES ALONG THE WAY. WE ARE PACKING A TENT AND HEADING OUT. I TOLD ADAM A FEW NIGHTS IN A BED AND BREAKFAST WOULD BE NICE TOO. HE AGREED. WHEN WE GET BACK FROM OUR TRIP IT WILL BE BACK TO WORK FOR ADAM AND I WILL HAVE TO FIND MYSELF SOMETHING TO DO. LIFE HAS CHANGED SO MUCH FOR ME. GOING BACK INTO THE REAL WORLD IS A LITTLE SCARY. I HAVE JUST HAD TO BE HIS MOMMY FOR SO LONG AND CARE FOR HIM THAT IS ALL I KNOW HOW TO DO. AGAIN I AM SURE IT WILL COME WITH TIME. I MISS HIM AND OF COURSE I WILL WRITE THIS EVERY TIME I MISS HIM AND WANT TO WRAP MY ARMS AROUND HIM AND TUCK HIM IN AT NIGHT. MY EMOTIONS ARE ON A ROLLERCOASTER. I AM HAPPY THEN SAD THEN ANGREY. I JUST ASK SKYLAR TO GIVE ME A LITTLE OF HIS STRENGTH AND THAT SEEMS TO HELP. ALSO ADAM AND I HAVE BEEN GOING UP TO HIS CEMETARY EVERY NIGHT AND READING HIM BOOKS. I THINK IT HELPS US MORE THAN ANYTHING. THEN WE TELL STORIES WITH HIM LIKE HE WAS SITTING RIGHT THERE. HE VERY WELL COULD BE. WE MAY LOOK CRAZY BUT WE ALWAYS FEEL BETTER WHEN WE LEAVE. I GUESS IT IS KIND OF LIKE ARE TUCKING HIM IN EVERY NIGHT. OH HOW I MISS HIM. WELL IT IS GETTING LATE AND I HAVE TO TAKE THE CAR IN EARLY TO GET READY FOR OUR TRIP. PLEASE KEEP PRAYING FOR OUR STRENGTH EVERYDAY. ALSO IF YOU FEEL LIKE SAYING HELLO TO SKY HE LIKES IT I CAN TELL. HE IS SMILING AT ME RIGHT NOW WITH HIS BIG BLUE EYES. I LOVE YOU PUMPKIN! KELLY

Sunday, May 28, 2006 5:06 PM CDT

The Thompson family needs all of our love and prayers for Joey. He is a three year old with the same cancer that Sky had. He's having a long hard surgery tomorrow to remove "mr. tumor". We know Skylar is watching over him ...his dad says he has suddenly become interested in superman!!!! caringbridge.org/visit/joeythompson. Thanks Cris.

UPDATE: THERE WILL BE A CHARITY SOCCER GAME AT MILLARD NORTH HS. IT IS BOYS VS GIRLS GAME AND IT IS IN HONOR OF SKYLAR. IF YOU WOULD LIKE TO COME THE GAME STARTS AT 7PM THIS THURSDAY JUNE 1ST. ALL PROCEEDS WILL GO TO CURE SEARCH. HOPE TO SEE YOU ALL THERE.

THANK YOU EVERYONE THAT CAME AND GAVE OUR FAMILY SUPPORT DURING THESE VERY DIFFICULT DAYS. I COULD GO ON FOR HOURS ABOUT HOW TERRIBLE THIS ALL IS, BUT I AM IN AN OK STATE OF MIND RIGHT NOW AND WHY RECK THAT. SKYLAR WILL BE VERY MISSED AND I THINK I AM STILL IN SHOCK. I KNOW HE IS WITH ME. I CAN HEAR HIS LITTLE VOICE TELLING ME MOMMY YOUR BEAUTIFUL. HE HAD TO BE THE STRONGEST LITTLE MAN I HAVE EVER MET. THE LAST FEW DAYS OF SKYLARS LIFE WERE REALLY BAD. HE KEPT VERY STRONG UNTIL THE LAST DAY OR SO. I THINK GOD CAME AND TOLD HIM IT WAS TIME TO COME HOME. HIS BODY SHUT DOWN VERY QUICKLY. IT IS A GOOD THING HE DIDN'T HAVE TO STAY THAT WAY LONG BECAUSE IT KILLS INSIDE TO SEE YOUR SON FEELING LIKE THAT. HE STOPPED EVERYTHING AND JUST LAYED THERE WITH HIS EYES CLOSED ON SUNDAY. I PICKED HIM UP HELD HIM AND TOLD HIM GOOD-BYE. AROUND 4:30AM ON MONDAY I WAS HOLDING HIS HAND AND TELLING HIM HOW STRONG HE WAS. THAT WAS THE LAST TIME I SAW HIM BREATHING. MONDAY AT 7:15 ADAM TAPPED ME ON THE SHOULDER BECAUSE I HAD FALLEN ASLEEP, SKYLAR LAYED THERE STILL. GOD HAD TAKEN HIM HOME. I HAVE BEEN TOLD THAT PEOPLE LIKE TO GO ALONE. I GET VERY UPSET THAT I WASN'T HOLDING HIS HAND WHEN HE LEFT, BUT I THINK THAT MUST HAVE BEEN HOW HE WANTED IT. MY MOM SAYS THE ANGELS TURNED ME OVER SO SKYLAR WOULD GO.
TOMMOROW WILL BE ONE WEEK I HAVE BEEN WITHOUT HIM. IT STILL FEELS LIKE HE IS SPENDING THE NIGHT SOME WHERE AND I WILL BE PICKING HIM UP SOON. THE HARDEST THING IS WHEN YOU WAKE UP EVERY MORNING AND THE REALIZATION KICKS IN. I DON'T JUST LAY IN BED BECAUSE I KNOW SKYLAR WOULD WANT ME TO BE HAPPY. SOMETIMES IT IS HARD BUT MY FAMILY HAS BEEN HERE EVERYDAY TO MAKE SURE I AM OK. THANKS AGAIN EVERYONE FOR CARING SO MUCH. SKYLAR LOVED EACH AND EVERYONE OF YOU. GOD BLESS MY LITTLE ANGEL.-KELLY-

Sunday, May 21, 2006 7:52 PM CDT

Services have been scheduled for Skylar, the wake will be Thursday evening at John A Gentleman at 1010 N 72nd Street (72nd and Western) from 6:00 PM - 8:00 PM. Skylar's funeral service will be at St Stephen the Martyr 16701 S Street (167th and Q) at 10:30 on Friday morning. Thank you all for your support, your messages and prayers really mean a lot to our family now. Cris (Skylar's grammy).

UPDATE: Monday, May 22...MOST PEOPLE JUST DREAM OF ANGELS, WE GOT TO HOLD ONE.....the angels came for Skylar this morning at 7:00. As always he was surrounded by love. Cris (Skylar's grammy)

Kelly asked me to update today, this is the backround I used when I started this site almost two years ago (like now, because Skylar needed his mom by his side). The picture was taken by Liz Larson just a few months ago...... Our journey is almost over. Sky has fought and won many tough battles, he is a super hero of the greatest magnitude, but this monster, cancer, is winning the war. We have spent the last several weeks adding to the many memories that we will always keep in our hearts. Skylar is sleeping most of the time now with his beloved mom by his side (I've never known a child to love their mom as much as Sky loves Kelly). He seems to be more at peace than he has been in the last several days. This really is a blessing. Kelly has been remarkable, showing courage and grace under the worst of circumstances, and doing exactly what's right for Skylar. Kelly, Adam, and Drew really appreciate the support you all are giving them, as do the rest of us while we do our best to take care of our children and say goodbye to our beautiful boy. I am posting some of my favorite pictures of Skylar. We will be sure to update with any news. Thank you again for your prayers and support. Cris (Skylar's grammy)

I just read what I had written and have to say, Skylar would be soooooo mad at me if he knew I called him beautiful....so I will leave it as is (for me) but make sure everyone knows he would prefer I call him handsome.....Cris

Friday, May 12, 2006 11:42 PM CDT

HELLO EVERYONE WE ARE ALL DOING OK. THINGS HAVE NOT REALLY CHANGED WHICH I GUESS IS GOOD. HE IS STILL CUDDLING ME EVERYNIGHT AND SMILES IF I ASK FOR ONE. WE HAD TO GIVE HIM A BATH TODAY AND CHANGE HIS PATCH. HE HATES ANYTHING THAT MAKES HIM GET OUT OF BED. HE DID VERY WELL AT CALMING HIMSELF DOWN AND TAKING IT OFF HIMSELF. HE IS SO BRAVE BECAUSE HE KNOWS THE TAPE FROM THE PATCH WILL HURT BUT HE DOES IT SO WE WONT HURT HIM. HE WAS PRETTY TIRED AFTER HIS TUBBER BUT TREASURE PLANET WAS ON DISNEY AND WE RESTED AND WATCHED THAT TOGETHER. MY SISTER AND HER HUSBAND TERRY CAME IN TOWN TUESDAY BECAUSE SKYLAR WAS LOOKING BAD. IT SEEMS THAT HE HAS GOT A LITTLE MORE COLOR BACK SINCE THEN AND HAS BEEN TRYING TO EAT A COUPLE BITES OF PUDDING OR ICE CREAM TO MAKE ME HAPPY. DR PEPPER SEEMS TO BE ON THE TOP OF HIS LIST LATELY. WE HAVE HAD A LOT OF FAMILY OVER COOKING AND TAKING CARE OF US. THANKS YOU EVERYONE FOR EVERYTHING YOU ARE DOING AND FOR ALL OF THE NICE MESSAGES. I KNOW NO ONE KNOWS WHAT TO SAY BECAUSE I DON'T EVEN KNOW WHAT TO SAY BUT THANKS FOR BEING THERE FOR US WHEN WE NEED YOU. I WILL UPDATE WITH CHANGE. KELLY

Monday, May 8, 2006 0:27 AM CDT

THINGS HAVE BEEN GOWING DOWN HILL. HE HAS BEEN LAYING IN BED FOR THREE DAYS NOW AND DOES NOT WANT TO EAT OR DRINK UNLESS IT IS WATER WITH HIS MEDICINE. HIS PAIN SEEMS TO BE UNDER CONTROL FOR THE FIRST TIME. HE SEEMS LIKE HE IS STARING AT NOTHING A LOT AND WHEN I ASK HIM WHAT HE IS DOING HE SAYS NOTHING. I KEEP ASKING HIM IF HE WANTS TO TALK BUT HE SAYS NO. HE DOESN'T REALLY LET ANYONE TOUCH HIM VERY MUCH. I THINK HE GETS WORRIED THEY WILL HIT A TENDER AREA. HE DOES HOWEVER LET ME PUT MY ARM AROUND HIM TO CUDDLE. THANK GOD! THINGS ARE LOOKING DOWN, BUT AT LEAST HE IS STILL TALKING A LITTLE AND HE WILL SMILE WHEN YOU ASK FOR ONE. HE IS CALLING FOR ME SO I WILL UPDATE AGAIN SOON. PLEASE PRAY FOR HIM. KELLY

Thursday, May 4, 2006 0:58 AM CDT

IT HAS BEEN AWHILE SINCE I UPDATED. SKYLAR HAS HAD A COUPLE REALLY GOOD DAYS SINCE MY LAST UPDATE. THIS WEEKEND HIS SPIRIT CAME BACK AND WE HEADED TO CHUCKY CHEESE. HE WAS A LITTLE SLOW WHEN WE GOT THERE BUT ONCE HE GOT THOSE TOKENS HE WAS ALL OVER THE PLACE SMILING AND LAUGHING. I GRABBED MY CAMERA FOR THE OCCASION AND OF COURSE THE BATTERIES DIE AFTER THE FIRST COUPLE. THEN WE CAME HOME AND HE WANTED TO EAT AND WATCH TV, HE DIDN'T EVEN HEAD FOR BED UNTIL MIDNIGHT. IT WAS WONDERFUL! THE NEXT DAY WAS THE SAME HE WOKE UP AND STARTED GETTING DRESSED FOR FAMILY FUN CENTER. WE HAD A GREAT COUPLE OF HOURS PLAYING THEN HEADED HOME FOR MORE PIZZA. IT WAS HIS GUARDIAN ANGEL LIFTING HIM UP. WE ALL REALLY NEEDED TO HAVE SOME FUN TIME IN THE FAMILY. ALL OF US WERE GRINNING EAR TO EAR. SINCE MONDAY HE HAS SLOWED DOWN AGAIN BUT IS STILL TALKING AND WATCHING TV. THE PAIN IS STARTING TO GO UP AGAIN. HOPEFULLY WE WILL GET HIS NURSE OVER HERE TOMORROW AND THEY WILL UP HIS PATCH. HE HAS BEEN WANTING TO GO TO A MOVIE LATELY. SO EVERYONE PRAY FOR A GOOD DAY FOR HIM TO GET TO THE MOVIES. WE COULDN'T BE HAVING ALL OF THESE FUN DAYS IF IT WASN'T FOR ALL OF YOUR PRAYERS. WISH US LUCK FOR MORE FUN DAYS TO COME. I GET TO LEAVE SMILLING BECAUSE OF THE FUN TIMES WE HAVE HAD. KELLY

Friday, April 28, 2006 12:55 AM CDT

THINGS HAVE BEEN PRETTY HARD LATELY. SKYLAR IS USUALLY IN SOME PAIN WHEN EVER HE IS AWAKE. THE BEST TIME OF THE DAY SEEMS TO BE THE EVENING. MY FATHER WENT TO THE HOSPITAL THIS WEEK AND SKYLAR WANTED TO GO STAY WITH NANA. SO WE PACKED UP FOR TWO DAYS AND WENT TO MY MOMS. IT WAS A NICE CHANGE OF SCENERY. SKY SEEMED A LITTLE BETTER WHILE HE WAS THERE. HE GOT UP AT 5AM AND ATE BREAKFAST WITH NANA BEFORE SHE LEFT FOR WORK. WE CAME HOME LAST NIGHT AND WATCHED SOME T.V. THEN HE WENT TO BED. THIS MORNING IS THE SAME HE WOKE UP IN PAIN TOOK SOME MEDICINE AND FELL BACK TO SLEEP.
GRAMMY AND PAPA ARE COMING OVER TO WATCH HIM WHILE DREW,ADAM AND I GO TO THE MORTUARY. SOMETHING I CAN NOT STAND TO DO, BUT I THINK I WILL SLEEP BETTER KNOWING IT IS DONE. HE STILL GETS LITTLE PERKS LIKE WANTING TO DANCE OR SING. SO WE REALLY TREASURE THOSE MOMENTS. I WILL TRY TO PUT UP SOME OF THE MOTORCYCLE PICTURES TODAY. I HAVE TO GO BUT I WILL TRY TO UPDATE SOON. THANKS FOR CHECKING IN. KELLY

Friday, April 21, 2006 1:44 PM CDT

WE HAVE HAD A ROUGH DAY. SKYLAR WOKE UP SCREAMING IN PAIN. HIS NURSE CAME RIGHT AWAY AND CALLED THE PAIN DOCTOR. WE GAVE HIM MORPHINE AND THEN THEY UPPED HIS PAIN PATCH. THE PAIN PATCH TAKES ABOUT 12 HOURS TO REALLY KICK IN. THEN WHEN HIS NEXT ROUND OF MORPHINE WAS DUE HE TOOK IT AND FINALLY STARTED TO CALM DOWN. IT IS HORRIBLE BECAUSE HE SITS THERE SCREAMING THAT HE IS GOING TO DIE. I HAVE TO USE EVERY OUNCE OF STRENGTH TO NOT START CRYING. FOR NOW HE IS LAYING IN BED WATCHING SPONGE BOB AND HANGING OUT WITH THE DOGS.
WE WERE TRYING TO PLAN A CAMPING TRIP. WE THOUGHT IT WOULD BE GOOD FOR HIM TO JUST LAY AROUND AND FISH OR COOK SMORES. WE WERE GOING TO TRY TO GO TODAY BUT NOW WE ARE GOING TO WAIT UNTIL THE PATCH KICKS IN. WE HAVE CALLED EVERYWHERE TO TRY TO RENT A FOLD DOWN BUT NO ONE RENTS THEM OUT. IF ANY ONE HAS ANY IDEA OF WHERE WE COULD RENT ONE PLEASE EMAIL ME. OTHERWISE WE HAVE A TENT AND WE CAN TAKE ALOT OF BLANKETS.
FOR SOME GOOD NEWS LAST NIGHT WAS GREAT. OUR NEIGHBOR HAS A MOTORCYCLE WITH A SEAT FOR A KID IN THE BACK. HE ASKED SKYLAR IF HE WOULD LIKE TO GO. THE SMILE ON HIS FACE WAS PRICELESS. HE RAN INSIDE AND PUT ON HIS LEATHER JACKET THEN RAN OUT THE DOOR TO THE BIKE. WE VIDEO TAPED THE WHOLE THING AND HE SAID HE WOULD TAKE HIM SUNDAY AGAIN SO I WILL TAKE SOME PICTURES TO POST. OUR NEIGHBOR STEVE SAID HE KEPT ASKING HIM TO GO FASTER. HIS ADRENALINE WAS UP FOR THE REST OF THE NIGHT. IT TOOK AWHILE TO GET HIM TO BED.
WITH ALL OF THIS HORRIBLE STUFF GOING ON AROUND US WE STILL TRY TO MAKE IT VERY NORMAL. WE STILL PLAY GAMES EAT GOOD FOOD AND HOLD EACH OTHER A LOT. THANKS FOR ALWAYS CHECKING IN AND MAKING SURE WE ARE WELL. PLEASE KEEP UP YOUR PRAYERS. KELLY
P.S. THERE ARE NEW PICTURES UP.

Monday, April 17, 2006 2:56 PM CDT

HAPPY EASTER EVERYONE. WE HAD A GOOD RELAXING DAY. SKY WOKE UP IN A LITTLE PAIN SO HE TOOK SOME MORPHINE AND WE LAYED DOWN A LITTLE BIT LONGER. THEN HE GOT A GRIN ON HIS FACE AND GOT OUT OF BED AND STARTED LOOKING FOR EGGS. WE TEASED HIM THAT WE DIDN'T SEE ANY EGGS, BUT THEN HE OPENED THE BASEMENT DOORS AND THERE WAS A TRAIL OF EGGS LEADING DOWN THE STAIRS. HE FOUND ALL OF HIS EGGS THEN FOUND HIS BIG PRESENT, A SPONGE BOB SLEEPING BAG. HE HAS BEEN TELLING US HE WANTS ONE A LOT LATELY. GOOD THING THAT BUNNY KNOWS WHERE TO FIND THEM. WITH HIS CANDY HERE AND THE CANDY FROM GRANDPARENTS ARE HOUSE COULD BE A BIG BASKET. AFTER THE SEARCH FOR EGGS WE GRILLED OUT, IT WAS A LITTLE CHILLY BUT WE BUT ON OUR COATS AND HAD A GOOD TIME. THEN WE CAME IN AND WATCHED AGENT CODY BANKS, A MOVIE THE EASTER BUNNY BROUGHT HIM. HE MUNCHED A LITTLE MORE ON CANDY THEN HE WENT TO BED. IT WAS A HARD NIGHT BECAUSE YOU NEVER KNOW IF IT WILL BE YOUR LAST HOLIDAY WITH HIM. SO INSTEAD OF LETTING MYSELF CRY ALL NIGHT I WOKE HIM UP AND WATCHED CARTOONS WITH HIM UNTIL I FELT BETTER. HE WAS PRETTY HAPPY ABOUT THE LATE NIGHT T.V. WATCHING ALSO.
HE HAS GONE UP A LOT ON HIS PAIN MEDICINE. IT SEEMS TO BE GETTING WORSE. HE HAS BEEN A LOT BETTER ABOUT TELLING US SO WE CAN GET IT UNDER CONTROL BEFORE HE IS SCREEMING IN PAIN. WHEN IT STARTS TO CREEP UP ON HIM HE TELLS US AND WE GIVE HIM MEDICINE THEN LAY DOWN AND RUB HIS BELLY UNTIL IT IS BETTER. THEN HE IS ALL SMILES AGAIN AND WE TRY TO PLAY GAMES OR TALK.
I DIDN'T FINISH TELLING ABOUT THE FUN TRIP TO DISNEY. AFTER UNIVERSAL WE SPENT A DAY AT GIVE THE KIDS THE WORLD. WE SWAM PLAYED PUTT PUTT AND ATE ICE CREAM, WE REALLY NEEDED A BREAK FROM THE PARKS. WE STILL MADE IT TO EPCOT THAT NIGHT TO WATCH THE FIRE WORKS AND RIDE A NICE RELAXING RIDE CALLED SOARING. THEN WE WENT TO SEA WORLD ON MONDAY AND THAT WAS A LOT BETTER THEN I HAD EXPECTED. THE DOLPHIN SHOW WAS AMAZING. SKY WANTED TO SIT IN THE GET SOAKED AREA SO HANNAH,ADAM AND I SAT THERE WITH HIM WHILE THE OTHERS WENT UP A FEW MORE SEATS. WE WOUND UP ONLY GETTING A FEW SPRINKLES BUT IT FELT GREAT BECAUSE IT WAS SO HOT. WE ALSO GOT TO FEED THE DOLPHINS, WHICH WE GOT A LOT OF PICTURES OF. WHEN WE WENT TO THE SHAMU SHOW WE WERE A LITTLE MORE SCARED OF THE SOAK ZONE SO WE SAT UP FURTHER THIS TIME. THANK GOODNESS BECAUSE PEOPLE WALKED OUT OF THAT SHOW DRENCHED. HE WAS PRETTY TIRED BY THAT TIME SO HE SNOOZED IN HIS STROLLER A LITTLE AND THEN IT WAS OFF TO MEDIEVAL NIGHTS. THE VILLAGE GAVE US FREE TICKETS TO THE SHOW AND IT WAS GREAT. THE FOOD WAS GREAT BUT YOU DIDN'T GET ANYTHING TO EAT IT WITH BUT YOUR HANDS. THE FIGHTING WAS GREAT AND WE ALL SHOUTED FOR THE GREEN TEAM. WE DIDN'T WIN BUT WE WERE CLOSE. THAT NIGHT SKYLAR GOT TUCKED IN BY THE MAYOR RABBIT AT THE VILLAGE. HE GOT TO BED EARLY AND WE PACKED. THE NEXT DAY WE RODE THE TRAIN AND ATE A LITTLE MORE ICE CREAM BEFORE LEAVING FOR THE AIRPORT. MAKE A WISH MET US AT THE AIRPORT AND GOT OUR PICTURES TO MAKE A SCRAP BOOK. THEN THE LIMO TOOK US HOME. WE HAVE GREAT MEMORIES AND LOTS TO TALK ABOUT. THANKS YOU EVERYONE FOR PRAYING SO HARD FOR SKYLAR TO GET THERE.
THINGS ARE GETTING A LOT HARDER WITH SEEING HIM GET WORSE, BUT HE IS SUCH A FIGHTER THAT IT MAKES YOU STRONGER. KEEP PRAYING FOR PAIN CONTROL AND PLEASE KEEP WRITING MESSAGES IN THE GUEST BOOK TO LET US KNOW YOU ARE SAYING HELLO. THANKS KELLY.

Sunday, April 9, 2006 10:01 PM CDT

SO SORRY IT HAS TAKEN SO LONG TO UPDATE. SKY HAS BEEN IN THIS MOOD WHERE I CAN NOT LEAVE HIS SIDE. IF I GET ON THE COMPUTER HE YELLS AT ME AND SAYS HE MISSES ME. I LOVE THAT HE WANTS ME BUT I CAN'T GET ANYTHING DONE. AS FAR AS HOW HE IS FEELING, HE IS VERY LAZY. HE JUST WANTS TO LAY AROUND AND WATCH T.V.. I WONDER IF HE OVER DID IT A BIT TOO MUCH IN DISNEY WORLD AND IS STILL TRYING TO RECOUP. WE STILL HAVE HIS PAIN UNDER CONTROL, BUT ONCE IN AWHILE HE NEEDS A LITTLE MORE.
FOR THE GOOD STUFF. WE LOVED OUR VACATION. MAKE A WISH DOES SUCH A TREMENDOUS JOB AT MAKING YOUR DREAMS COME TRUE. THERE IS SO MUCH TO TELL BUT ALL OF IT WAS FUN. WE WENT TO MAGIC KINGDOM THE FIRST DAY AND HE REALLY LIKED THE TEA CUPS. HE WENT ON THEM 3 TIMES IN A ROW. HE DIDN'T WANT TO GO ON ANYTHING WITH HILLS OR WITH SPEED. HE LIKED BEING IN THE STROLLER WITH HIS COUSIN HANNAH. WE GOT THEM LITTLE SQUIRT GUNS WITH FANS TO PLAY WITH AND SKY KEPT GET HIS HEAD DRENCHED WITH IT. THE NEXT DAY WAS ANIMAL KINGDOM AND I LOVED THIS PARK. THERE WAS A NEW RIDE THERE THAT SKY DIDN'T MAKE IT ON BUT A FEW OF US ADULTS DID AND WHAT A THRILL. THE TRACK ACTUALLY BREAKS IN FRONT OF YOU AND YOU FLY BACKWARDS. HEHE. SKYLAR REALLY LIKED THE BUGS LIFE SHOW IN 3D. PLUS IT WAS REALLY SHADED THERE SO WE WERE NOT TOO HOT. WE ALSO GOT AUTOGRAPHS WITH POOH AND FRIENDS THERE. SATURDAY WE WENT TO UNIVERSAL AND IT WAS VERY HOT. SKY FROM THE VERY BEGINING NEEDED A NAP. HE WENT ON THE JIMMY NEUTRON RIDE WHICH WAS GREAT THEN TO E.T. AFTER THAT HE NEED TO RELAX. CRIS TOOK HIM TO THERE NICKELODEON HOTEL AND THE REST OF US WENT ON ROLLER COASTERS. WHEN HE GOT BACK IT WAS LATE BUT HE MANAGED TO GO ON THE SHREK RIDE BEFORE WE LEFT. WELL THAT IS ALL FOR NOW. I WILL UPDATE ABOUT THE REST OF HIS TRIP SOON. THANKS FOR THE ONGOING MAIL COMING IN. HE REALLY ENJOYS OPENING MAIL WHEN HE IS LAYING AROUND. PLEASE KEEP UP CONTINUED PRAYERS FOR HIS COMFORT AND STRENGHTH. KELLY

Tuesday, March 28, 2006 10:37 AM CST

April 8, UPDATE: I added a couple of pics from Disney, Kelly will post a collage as soon as it's done...as you can see we're all smiles!!! Thank you all so much for your kindness, thoughts, and prayers for Skylar and our families. Cris

THIS HAS BEEN A REALLY HARD WEEK. SKYLAR HAS BEEN TRYING TO GET USED TO HIS PAIN MEDICINE AND HE HAS BEEN VERY TIRED WITH LITTLE APPETITE. MONDAY WE SEEM TO HAVE GOT IT PRETTY CONTROLLED AND HE STARTED TO WANT TO PLAY AGAIN. WE WERE GETTING PRETTY SCARED WE WOULDN'T BE ABLE TO GO TO DISNEY WORLD BUT IT ALL TURNED AROUND.
LAST NIGHT WE HAD A LITTLE GOING AWAY PARTY AT MAKE A WISH. SKYLAR HAD A GREAT TIME. HE ATE PIZZA OPENED PRESENTS AND HUNG OUT WITH FAMILY AND FRIENDS. HE SEEMED LIKE GOOD OLD SKYLAR AGIAN. WE MISS THAT.
WEDNESSDAY MORNING THE LIMO PICKS US UP AND TAKES US TO THE AIRPORT. THEN WHEN WE ARRIVE A GREETER MEETS US AND TAKES US TO GET A RENTAL CAR. THEN IT IS OFF TO GIVE THE KIDS THE WORLD VILLAGE. I THINK WE WILL BE PRETTY TIRED FROM TRAVELING AND HANG OUT THERE THAT NIGHT. FROM WHAT I HAVE HEARD THERE IS PLENTY TO DO THERE. WE ARE GETTING VERY EXCITED. ITS LIKE THOSE COMMERCIALS WHERE YOU GET TO EXCITED TO SLEEP THE NIGHT BEFORE YOU LEAVE.
PLEASE KEEP PRAYING FOR SKYLARS PAIN TO GO AWAY THIS WEEK AND LET HIM BE THE 5 YEAR OLD HE DESERVES SO MUCH TO BE. ALSO PLEASE CHECK ON OUR FRIEND COLE WHO HAS RELAPSED AND NEEDS TO FIND A BONE MARROW DONOR. VISIT IA/COLEJIP
THANKS FOR ALL OF THE CONTINUED MAIL. SKYLAR IS GETTING SPOILED WITH PRESENTS. IT IS A GREAT WAY TO KEEP UP YOUR SPIRITS FOR HIM AND US. I WILL UPDATE AS SOON AS WE RETURN HOME. KELLY
*I WILL TRY TO PUT UP SOME NEW PICTURES TODAY.

Monday, March 20, 2006 8:21 PM CST

update:WE ARE HEADED TO DISNEY WORLD MARCH 29TH FOR 6 NIGHTS.

NEW PICTURES!

EVERYONE IS SO WONDERFUL. SKYLAR GOT A BUCKET FULL OF MAIL TODAY. WHAT A GREAT TIME WE ALL HAD OPENING THE FUN LETTERS. HE GOT COLORING BOOKS,STICKERS,MONEY,CANDY AND IT GOES ON AND ON. THANK YOU ALL SO MUCH FOR THE GOOD TIMES.
HERE IS A LITTLE UPDATE ON HOW SKY IS DOING. SATURDAY SEEMS TO BE THE LAST BAD DAY FOR SKY. HE IS GETTING A LITTLE BETTER EVERYDAY. HE STARTED A NEW NERVE DRUG THAT TAKES A COUPLE WEEKS TO REALLY KICK IN. WE CAN TELL IT IS STARTING BECAUSE FIRST THING THIS MORNING WE PUT ON OUR SNOW GEAR AND HEADED TO MEMORIAL PARK FOR SOME GOOD SLEDING. WE HAD GRAMMY, DADDY, AND ALL OF DUDES FAMILY SLEDING. HE HAS BEEN AMAZING TODAY. HE ALSO HAS STARTED EATING A LITTLE. LATELY HE HASN'T BEEN EATING AT ALL. WHEN WE GOT HOME FROM SLEDING WE MADE A 7-8 FOOT SNOWMAN. WITH THE CARROT NOSE AND EVERYTHING. THEN AFTER ALL OF THE DAY OF FUN WE GOT OUR MAIL. IT WAS A WONDERFUL FEELING WATCHING HIS FACE WHEN HE SAW HOW MANY PEOPLE ARE PRAYING FOR HIM.
WE HAVE SIGNED UP WITH HOSPICE AND THEY ARE VERY NICE PEOPLE. AS FAR AS MAKE A WISH WE SHOULD FIND OUT DATES TOMORROW. I LOOK FORWARD TO READING YOUR ENTREES EVERY DAY. THANKS FOR ALL OF THE NICE WORDS. WE ARE DOING BETTER WITH EACH DAY AND BECAUSE OF ALL THE PRAYERS WE ARE STAYING STRONG. KELLY

Thursday, March 16, 2006 10:05 AM CST

update: FOR THOSE OF YOU THAT WOULD LIKE TO PUT A SMILE ON SKY'S FACE HE LOVES MAIL. HE ALSO LOVES LITTLE SURPRISES IN HIS MAIL LIKE STICKERS, TEMP TATTOOES OR EVEN A DOLLAR. JUST MAKE THEM FUN. HE FEELS VERY IMPORTANT WHEN THE MAIL COMES AND THERE IS SOMETHING FOR HIM. OUR ADDRESS IS BELOW.

THIS IS VERY HARD TO WRITE. SKYLAR HAS BEEN TOLD THAT THERE IS NOTHING TO CURE HIM. THE MIBG IS POSSIBLE BUT WILL ONLY BUY HIM A COUPLE EXTRA WEEKS OF LIFE. HIS PAIN HAS BEEN GETTING WORSE EVERYDAY. THERE IS A DRUG THAT HAS HELPED ABOUT 30 PERCENT OF KIDS SLOW TUMOR GROWTH. WE WILL BE TRYING THAT WHILE WE CALL HOSPICE. HOPEFULLY WE CAN GET HIS PAIN UNDER CONTROL ENOUGH THAT WE CAN GET HIM TO HIS MAKE A WISH IN DISNEY WORLD. WE ARE NOT SURE HOW MUCH TIME WE HAVE LEFT WITH HIM BUT WE HAVE BEEN TOLD A FEW WEEKS TO A FEW MONTHS. THANK YOU EVERYONE FOR ALL OF THE LOVE AND SUPPORT YOU SHOW US WHEN YOU WRITE. IT REALLY HELPS ME TO FEEL BETTER WHEN PEOPLE SIGN THE GUESTBOOK. IF ANYONE CAN DO ANYTHING FOR US JUST KEEP PRAYING THAT SKYLARS PAIN IS CONTROLED WELL. I THANK GOD FOR GIVING ME THIS WONDERFUL CHILD AND I WILL CHARISH EVERY MINUTE LEFT WITH HIM. IT IS HARD TO WRITE SO I WILL WRITE AGAIN LATER THIS WEEK TO LET EVERY ONE KNOW WHAT IS GOING ON. KELLY

Wednesday, March 8, 2006 9:28 PM CST

UPDATE: SKYLARS PAIN HAS COME BACK AND IS GETTING PRETTY BAD. PLEASE PRAY FOR HIS TUMORS TO NOT GROW SO WE CAN GET HIM TO TREATMENT. KELLY

IT WAS A GREAT DAY. SKYLAR HAD KINDERGARTEN ROUND UP AND GOT TO MEET HIS TEACHERS AND PRINCIPAL. I HAD TO GIVE HIM SOME MORPHINE FOR PAIN BUT IT WORKED GREAT. WHEN I PEEKED IN THE ROOM TO SEE WHAT HE WAS UP TOO,HE WAS DRAWING ON THE CHALKBOARD AND TALKING TO THE TEACHER. WHEN I SAID HELLO HE RAN TO ME WITH SOME ART PAPER HE MADE. THERE WAS ANOTHER BOY THERE NAMED SKYLAR SO HE TOLD ME THEY WOULD BE FRIENDS.
I AGAIN HAVE TO THANK EVERYONE FOR THEIR PRAYERS. HIS TUMORS SUCKED UP THE ISOTOPE. I HAVEN'T RECIEVED AN OK YET TO GO TO CALIFORNIA BUT I AM PRETTY SURE ITS COMING. WE HAVE SO FAR FOUND OUT THERE ARE A FEW NEW TUMORS IN HIS LUNGS AND ONE OF THE NEW ONES IS THE LARGEST. HE ALSO HAS TUMOR WHERE WE FIRST FOUND IT, IN HIS LEFT ABDOMEN. WE STILL NEED TO GET ALL THE RESULTS FROM BONE MARROW AND MIBG. FOR SOME GOOD NEWS THE TUMORS IN THE LIVER HAVE NOT CHANGED, WHICH COULD MEAN THEY ARE DEAD! WE SHOULD HAVE MOST RESULTS BACK BY FRIDAY EVENING, SO I WILL KEEP YOU UPDATED. KELLY

Thursday, February 23, 2006 2:58 PM CST

3/7/2006 Skylar has an MIBG scan tomorrow, I'm asking everyone please pray especially hard that he takes up the MIBG isotope so he can have MIBG treatment in California next week. Thank you all, Cris

SORRY IT HAS BEEN SO LONG SINCE AN UPDATE. THERE HAS NOT BEEN MUCH CHANGE IN ANY INFORMATION. SKYLAR STOPS HIS RADIATION TOMORROW AND HE IS NO LONGER IN PAIN. WE ARE STILL SEARCHING FOR A GOOD TREATMENT. I KEEP GETTING THE ANSWER WE ARE LOOKING FOR QUALITY OF LIFE NOT A CURE. I CAN'T STOP HAVING HOPE. I AM SURE AS EVERY PARENT FEELS THAT THERE IS ALWAYS MARICLES AND OURS IS COMING. THE RADIATION DOCTOR TOLD US IF HIS TUMORS DO START TO GROW FASTER HE CAN DO SPOT RADIATION TO MOST OF THEM. THAT CAN ALWAYS BUY TIME AND WHO KNOWS WHAT CAN COME OUT NEXT. I FEEL WE MOST LIKELY WILL GO TO SANFRANCISO TO DO ANOTHER ROUND OF MIBG. DR MATTHAY WANTS TO WAIT AT LEAST 4 WEEKS AFTER RADIATION TO START IT. SHE IS NOT SURE IF SHE WANTS TO DO A LOW DOSE OR HIGH DOSE. HE ONLY HAS ONE BAG OF STEM CELLS LEFT AND A HIGH DOSE MOST LIKELY WILL NEED THEM. IF THEY DO LOW DOSE HE PROBABLY WON'T. I REALLY WANT TO SAVE HIS STEM CELLS JUST INCASE THAT MIRACLE TREATMENT COMES SOON AND WE NEED THEM. I HAVE BEEN CALLING DOCTORS ALL OVER THE COUNTRY AND HAVE GOT A FEW CALL BACKS TO TREATMENT THEY WILL OFFER. I KEEP SENDING ALL OF THE INFORMATION TO DR MATTHAY AND HER ASSISTANT AMY AND THEY LOOK INTO THEM. LETS HOPE WHAT WE PICK WILL GIVE HIM THE MOST TIME POSSIBLE. AS SOON AS WE HAVE A SET PLAN I WILL UPDATE. KEEP UP THE PRAYERS. KELLY

Wednesday, February 8, 2006 7:06 PM CST

WE HAVE GOT SKYLARS PAIN UNDER CONTROL AND HE WILL BE STARTING SPOT RADIATION TO THE LEFT LUNG ON THURSDAY. THE ONE TUMOR GREW FROM 13MM TO 35MM, AND IS PUSHING ON HIS CHEST WALL. THE TUMOR IS HITTING A NERVE THAT CAN SHOOT PAIN FROM THE BACK ALL THE WAY TO THE FRONT OF THE ABDOMEN. THE DOCTOR TOLD US HE IS PRETTY SURE THAT IS THE CAUSE OF HIS PAIN. DR. MATTHAY IN SAN FRANCISCO SAYS SHE THINKS WE SHOULD TRY A LOW DOSE MIBG AFTER RADIATION AND THEN WHEN HIS COUNTS COME BACK UP HEAD OUT THERE FOR PZA, WHICH IS A CHEMO. I HATE CHEMO'S WITH SKY BECAUSE HE HAS NEVER TAKEN TO THEM, HOWEVER WE JUST NEED TO FIND ONE THING THAT WORKS. I HAVE BEEN SPEAKING TO CHILDREN'S IN COLORADO AND THEY THINK THEY MAY HAVE SOME OTHER FORMS OF TREATMENT AVAILABLE. I WILL BE RECIEVING THE INFORMATION ABOUT THEM THIS WEEK. HOPEFULLY WE WILL FIND SOMETHING THAT SOUNDS PROMISING. WE HAVE BEEN TOLD THE TREATMENTS LEFT IN CALIFORNIA ARE NOT FOR CURING BUT FOR BUYING TIME. WHICH ANYONE WITH CANCER KNOWS THATS THE WORST THING TO BE TOLD. SO I WANT TO KEEP SEARCHING FOR OTHER OPTIONS. FOR NOW LETS JUST PRAY THAT THIS RADIATION WILL LESSEN SKY'S PAIN. I WILL UPDATE AS SOON AS THINGS CHANGE. KELLY

Wednesday, February 1, 2006 12:11 AM CST

UPDATE: SKYLAR HAS BEEN IN SOME PAIN THESE PAST FEW DAYS AND CT SCAN ON FRIDAY SHOWES HIS TUMORS HAVE RAPIDLY GROWN. WE HAVE BEEN ASKED TO STOP THE NEW PROTOCOL CEP-701. WE ARE NOT SURE OF A NEXT STEP RIGHT NOW BUT DR.GORDON HAS MENTIONED RADIATION TO THE TUMOR CAUSING HIM RIB PAIN. WE HAVE GONE SO LONG WITH OUT ANY PAIN. HE IS NOW ON MEDICATION TO HELP A LITTLE. PLEASE EVERYONE DO A LOT OF PRAYING TO RID HIS LITTLE BODY OF THIS HORRIBLE DISEASE! WE WILL START FIGHTING HARDER THAN EVER!
DISNEYLAND WAS THE MOST FUN I HAVE HAD IN ALONG TIME. THE PICTURE OF SKYLARS FACE WHEN GRAMMY MET US AT THE AIRPORT AND WE TOLD HIM WHERE HE WAS GOING WAS PRICLESS! HE HAD DINNER WITH GOOFEY AND ALL OF THE DISNEY CHARACTERS CAME BY OUR TABLE AND TOOK PICTURES WITH US. GRAMMY SIGNED US UP FOR A TOUR ON SATURDAY AND THAT WAS GREAT. THE PLOT WAS TO FIND OUT WHICH CHARACTER THIS BOOK BELONGED TO THAT WAS FOUND. WE WENT ALL OVER THE PARK TO ASK EVERY ONE FROM SNOW WHITE TO WOODY TO MICKEY. THEY EVEN GOT GRAMMY AND I TO ACT LIKE TRAINS, ANIMALS AND PIRATES. IT WAS A WHOLE DAY OF LAUGHS. SKYLAR WENT ON RIDES LIKE SPACE MOUNTAIN, THUNDER MOUNTAIN, SPLASH MOUNTAIN AND I THINK HIS FAVORITE ONES WHERE PETER PAN, PIRATES OF THE CARIBBEAN AND WINNIE THE POOH. BETWEEN CRIS AND I WE HAVE LIKE 500 PICTURES. AS IF THE TRIP WASN'T THE MOST WONDERFUL THING ADAM SURPRISED US AT THE AIRPORT IN SAN FRANCISCO AND HELPED US OUT WITH THE MEDS.
AS FOR SKYLARS ON GOING MEDICINES. WE FOUND OUT THAT HIS CANCER HAS SPREAD TO HIS BONE MARROW. WE ARE TO BELIEVE THAT IT IS VERY LITTLE SO FAR. WHEN WE ARRIVED TO SAN FRANCISCO HIS LIVER FUNCTION WAS TO HIGH TO START HIS PROTOCOL. WE HAD TO DO A FEW BLOOD TESTS AND THEY WERE ALL TO HIGH TO START. SO THE DOCTOR SAID HAVE A GOOD TIME IN DISNEYLAND AND WE WILL CHECK HIM ON MONDAY. MONDAY MORNING CAME AND I THOUGHT WE WOULD BE SENT HOME WITH PLANS FOR SOMETHING ELSE UNTIL THE NURSE CAME IN AND TOLD US HIS LIVER FUNCTION WAS RIGHT AT 41. HE WAS AT 48 THE WEEK BEFORE AND TO BE ON THE PROTOCOL YOU HAVE TO BE AT 41 OR LOWER! THANKS AGAIN FOR ALL OF THE PRAYERS WHILE WE WERE GONE. SO WE STARTED THE MEDICINE THAT MORNING. THE FIRST TIME HE TOOK IT HE GOT SICK ABOUT AN HOUR LATER. THEN HE GOT ON NAUSEA MEDICINE AND HE HAS BEEN GOOD SINCE. THE MEDICINE IS MONDAY THROUGH FRIDAY, MORNING AND NIGHT DOSES. HE IS OFF ON SATURDAY AND SUNDAY. WE HAVE SCANS THE WEEK OF THE 13TH AND HEAD BACK OUT THE 16TH FOR BLOOD WORK AND A DOCTOR VISIT ON THE 20TH. SKYLAR IS ON A HIGHER DOSE OF THIS MEDICINE THEN THE LAST BUNCH OF KIDS, AND SOME OF THOSE KIDS ARE A YEAR OUT WITH NO GROWTH! WE HAVE TALKED ABOUT OTHER TREATMENTS IF THIS DOESN'T WANT TO DO THE JOB AND THERE ARE STILL SOME MORE THAT COULD DO THE TRICK. HOPE IS ALWAYS WITH US BUT BECAUSE OF THE RESENT FIND OF MORE CANCER IT HAS BEEN HARD. DR. MATTHAY ALWAYS ENCOURAGES US THAT WE WILL KEEP FIGHTING. IF THIS MEDICINE WORKS WHO KNOWS WHAT MIGHT BE OUT THERE TO FIGHT THIS CANCER YEARS FROM NOW.
WE ARE NOW HOME AND ENJOYING THE SCRAP BOOKS THAT CRIS PUT TOGETHER OF THE TRIP. WE WILL BE UPDATING THE PHOTOS SOON. THANKS FOR CHECKING IN ON US AND GOD BLESS! KELLY

Monday, January 16, 2006 4:32 PM CST

WE HAVE MADE OUR PLANS AND WE LEAVE WEDNESSDAY MORNING. DR MATTHAY COULDN'T SEE SKYLAR NEXT MONDAY BEFORE THE TREATMENT. SO WE ARE BOOKED TO SEE HER WEDNESSDAY AND START THE PROTOCOL ON MONDAY. THE TREATMENT IS MONDAY THROUGH FRIDAY TWICE A DAY IN JUICE. HE CAN STAY ON THE TREATMENT AS LONG AS IT WORKS. HIS FIRST SET OF SCANS WILL BE IN A MONTH. WE RETURN SATURDAY THE 28TH.
THIS IS TOP SECRET BUT GRAMMY HAS PLANNED TO FLY SKY AND I TO DISNEY LAND THURSDAY UNTIL SUNDAY NIGHT BEFORE HE STARTS. SHE HAS BOOKED US OUR FLIGHTS AND HOTEL. WHAT EVER YOU DO DONT'T TELL SKY WE ARE SURPRISING HIM. WE ARE TELLING HIM THURSDAY THAT HE HAS TO TAKE A SHORT FLIGHT TO MEET ANOTHER DOCTOR OUT THERE AND WHEN WE ARRIVE GRAMMY WILL BE AT THE GATE. WE ARE GOING TO HAVE SO MUCH FUN! ITS POSSIBLE THIS MEDICINE CAN MAKE HIM SICK SO ITS GREAT HE IS GOING TO HAVE A WONDERFUL WEEKEND BEFORE HE STARTS.
WE WILL UPDATE AS SOON AS THE GREAT WEEKEND IS OVER AND TELL YOU ABOUT THE MEETING WITH THE DOCTOR. HAVE A GOOD WEEK AND KEEP UP THE PRAYERS. KELLY

Wednesday, January 11, 2006 9:18 PM CST

WE HAVE SPOKE TO DR.MATTHAY AND WE DECIDED THE NEXT BEST STEP IS CEP-701. THIS PROTOCOL IS A GENE THERAPY INSTEAD OF A CHEMO(THANK GOD). CEP-701 HELPS BLOCK A GENE THAT NEUROBLASTOMA USES, AND EVENTUALLY CAN KILL IT OFF. SOUNDS GOOD TO ME. I JUST GOT AN E-MAIL FROM AIMEE IN CALIFORNIA AND SHE SAID ONE OTHER KID FROM THE HOSPITAL GOT THIS PROTOCOL AND HE WAS ON IT FOR A YEAR THEN STOPPED BECAUSE HE NEVER HAD NEW TUMOR GROWTH. THEY THINK HIS CANCER JUST MATURED ITS SELF. PLEASE GOD HAVE THAT HAPPEN WITH SKY!!!!
I HAVE ONCE AGAIN ASKED ABOUT SURGERY AND RADIATION AND DR.GORDON SAID HE WOULD GET BACK TO ME. FOR NOW WE HAVE A PLAN WHICH MEANS MORE TRAVELING TO CALIFORNIA. OH WELL AT LEAST ITS CALIFORNIA AND NOT SOME WHERE FREEZING WITH SNOW.
WE HAVE BIG NEWS! MY SON HAS LOST HIS FIRST TOOTH!! HE WAS SO EXCITED ABOUT THE TOOTH FAIRY COMING HE COULD BARELY GO TO BED LAST NIGHT. THE TOOTH FAIRY LEFT HIM 4 HALF DOLLARS COVERED IN GLITTER AND UNDER HIS PILLOW. WE WERE WOKEN UP AT 5AM TO CELEBRATE. ITS FUN TO BE A PARENT AND SEE YOUR CHILD GO THROUGH THE FUN THINGS YOU LOVED WHEN YOU WHERE A KID. I AM GOING TO TRY TO GET A PICTURE UP OF THE MISSING TOOTH. I WILL WRITE AGAIN AS SOON AS WE FIND OUT MORE. THANKS FOR THE PRAYERS LATELY IT HAS BEEN A HARD WEEK. GOD BLESS. -KELLY-

Monday, January 2, 2006 6:28 PM CST

NEW PICTURES!!!
HAPPY NEW YEAR. WE GOT RESULTS FROM SKYLARS SCANS LAST WEEK AND ONE OF HIS TUMORS IN HIS LUNGS GREW A LITTLE, HOWEVER THERE IS NO CHANGE IN ANY OF THE OTHER ONES. WE ARE NOT QUITE SURE IF WE ARE KICKED OFF THE PROTOCOL OR NOT. DR MATTHAY IS OUT OF HER OFFICE UNTIL THE 9TH. OUR LAST VISIT TO CALIFORNIA SHE TOLD ME THERE WILL BE OTHER THINGS WE CAN TRY IF THIS TREATMENT DIDN'T WORK. OF COURSE THIS ISN'T THE WAY TO START OFF THE NEW YEAR BUT WE HAVE BEEN ON THE ROLLERCOASTER RIDE LONG ENOUGH TO CRY A LITTLE THEN GET OUR MINDS BACK ON TRACK FOR THE CURE. WE HAVE SO MUCH TO BE THANKFUL FOR THIS YEAR ESPECIALLY SKYLAR FEELING SO WELL AND NOT HAVING ANY PAIN. THAT IS THE HARDEST PART OF THIS IS TO SEE YOUR CHILD SUFFERING AND NOT BEING ABLE TO DO ANYTHING. SKYLAR HAS SO MANY WONDERFUL PEOPLE IN HIS LIFE AND EVERYONE WHO MEETS HIM INSTANTLY MAKES A BOND. I THANK GOD FOR GIVING ME THIS SPECIAL LITTLE CHILD AND BELIEVING I CAN GIVE HIM THE PROPER CARE HE NEEDS. THANKS TO EVERY ONE WHO HAS HELPED US OUT WITH THIS HARD JOURNEY. I STILL BELIEVE HE IS GOING TO FIGHT THIS MONSTER. KEEP UP YOUR PRAYERS. KELLY

Monday, December 19, 2005 9:35 PM CST

THIS IS OUR LAST NIGHT IN CALIFORNIA. THE TREATMENT WAS A BREEZE. SKYLAR DOES VERY WELL WITH THE MEDICINE AND HE LOVES TO BE THE CENTER OF ATTENTION WITH ALL OF THE STAFF AT UCSF. WHAT AN AMAZING HOSPITAL. THEY TREAT US LIKE STARS. THIS TRIP ALMOST FELT LIKE A VACATION. MY SISTER JENNY CAME TO VISIT WHICH WAS GREAT BECAUSE WE DONT GET TO SEE HER VERY OFTEN SINCE SHE LIVES IN MARYLAND. THERE WAS A LOT OF LAUGHTER AND PLAY TIME. SKYLAR LOVES THE CHEESECAKE FACTORY SO JENNY TREATED US TO THE RESTAURANT ALMOST EVERYDAY. WHILE HE WAS IN THE HOSPITAL ONE DAY THE 49ERS WHERE THERE AND THEY GAVE HIM A BUILD A BEAR DOG DRESSED IN THERE GEAR. I HAVE A PICTURE OF IT SO WHEN I GET HOME I WILL ADD IT TO THE PAGE. HE MET A KID HIS AGE HERE AT THANKSGIVING AND THEY GOT TOGETHER TO PLAY AND EAT. OF COURSE SKYLAR JUMPED ON THE TRAMPOLINE ONCE AGAIN AND HE IS ALMOST GETTING TO BIG FOR ONE OF THE JUMPS. I THINK HE WAS MORE PROUD OF THAT THEN SAD. THERE IS ALWAYS A FULL DAY HERE EVERYDAY SO I COULD GO ON AND ON BUT I WOULD RATHER ENJOY OUR LAST NIGHT. THANKS FOR CHECKING IN AND WE WILL BE HOME TOMORROW NIGHT. UNTIL NEXT TIME MERRY MERRY CHRISTMAS! KELLY

Sunday, December 4, 2005 6:38 PM CST

WE ARE HOME FROM CALIFORNIA. WE LEAVE AGAIN ON SUNDAY THE 11TH OF DECEMBER. IT IS WAY TOO COLD HERE. WE WERE SPOILED WITH THE WARM WEATHER. SKY IS FEELING WELL AND RUNNING AROUND LIKE USUAL. THE TREATMENT WENT VERY WELL BECAUSE SKY STARTED TO LIKE THE DRINK HE HAD TO TAKE. HE STARTED TO GIVE IT THE THUMBS UP LATER IN THE WEEK. THEN WHEN HE WAS DONE WITH IT HE ACTUALLY ASKED IF HE COULD HAVE SOME SLIM FAST TO DRINK. WE HAVE SCANS THE WEEK AFTER CHRISTMAS TO FIND OUT IF THE MEDICINE IS WORKING. IF NOT THEN WE STOP THE PROTOCOL AND IF IT IS WORKING THEN WE GET TO KEEP ON THE STUDY FOR 6 ROUNDS. AFTER THIS NEXT TRIP TO CALIFORNIA WE GET TO STAY HOME FOR THE NEXT TREATMENT IN JANUARY. LETS PRAY THAT THIS TREATMENT CAN BE THE LAST STEP IN THIS HORRIBLE DISEASE. THANKS FOR CHECKING IN AND WE WILL UPDATE SOON. KELLY

Tuesday, November 22, 2005 4:18 PM CST

HELLO FROM CALIFORNIA. WE HAD ARE APPOINTMENT WITH DR. MATTHAY YESTURDAY AND IT WAS ALL POSITIVE. SHE KEPT TELLING US HOW EXCITED SHE WAS WITH THIS NEW TREATMENT. SHE SAID WHE WOULDN'T EVEN BE TRYING THIS IF SHE DIDNT THINK IT WOULD WORK. SHE ALSO HAD A VERY HARD TIME EVEN LOCATING HIS TUMORS ON HIS SCANS. THIS IS EXACTLY WHERE SHE WANTED HIM TO BE TO START THIS PROCEDURE. AS YOU CAN TELL IT WAS ALL GOOD NEWS AND WE LEFT THE OFFICE WITH HUGE SMILES ON OUR FACES. I EVEN GOT A LITTLE TEARY EYED DURING THE MEETING.
SKY STARTED THE TREATMENR TODAY AND WE WERE TOLD IT SHOULD TASTE LIKE CHOCOLATE SHAKE WITH COOKIE DOUGH FLAVOR. WHEN SKY TRIED IT HE GAVE IT A THUMBS DOWN. I CAN'T BLAME HIM BECAUSE NOT ALL OF THE POWDER MIXED INTO THE SLIM FAST DESOLVES. AT THE END OF THE DRINK HE HAS TO EAT THE LEFT OVER POWDER AND THEN PUT WATER IN THE CUP TO FINISH OFF WHAT EVER IS LEFT. IT TOOK HIM ABOUT 30 MINUTES TO GET IT DOWN THIS MORNING. WE ARE HOPING FOR IT TO GO QUICKER TONIGHT. SINCE WE DIDN'T GET HIM TO START UNTIL 9:30 WE WON'T BE ABLE TO LEAVE UNTIL 6PM TONIGHT WHEN THEY ARE DONE WITH ALL OF THE BLOOD SAMPLES. HE IS DOING GOOD AND PLAYING NINTENDO. THEY ALSO HAVE A GOOD PLAYROOM HE HAS BEEN PAINTING IN.
AS FAR AS THANKSGIVING GOES THE FAMILY HOUSE HAD A TURKEY DINNER LAST NIGHT WITH ALL OF THE FAMILIES AND IT WAS WONDERFUL. LOTS OF GOOD CONVERSATION AND FOOD. SKY HAD A COUPLE KIDS HIS AGE TO PLAY WITH AND A CLOWN SHOWED UP SO THAT MADE THE NIGHT. WE ARE HOPING TOMORROW WE CAN GO TO FISHERMANS WARF AND JUMP ON THE TRAMPOLINE AGAIN. THIS HAS GOT TO BE THE EASIEST TREATMENT YET. WE ARE DOING WELL AND ENJOYING ARE TIME. THANK YOU EVERYONE FOR PRAYING SO HARD FOR OUR FAMILY. THE POWER OF PRAYER HAS REALLY HELPED US. HAVE A HAPPY THANKSGIVING. I WILL UPDATE WITH ANYTHING NEW. KELLY

Sunday, December 4, 2005 6:38 PM CST

Tuesday, November 22, 2005 4:18 PM CST

Wednesday, November 9, 2005 1:51 PM CST

NEW PICTURES!
UPDATE: SKYLARS SCANS SHOW NO NEW GROWTH AND TWO OF HIS TUMORS IN HIS LUNGS ARE TAKING UP LESS MIBG WHICH MEANS THEY COULD BE DYING. GREAT NEWS FOR US. THANKS FOR YOUR CONTINUED PRAYERS.
WE ARE FINALLY DONE WITH ALL OF HIS SCANS FOR CALIFORNIA. NO KID SHOULD HAVE TO SIT THROUGH SO MUCH AND THEN HE HAS TO DO ALL OF IT OVER AGAIN BEFORE CHRISTMAS. HE IS SUCH A STRONG KID HE WON'T EVEN COMPLAIN. ARE FLIGHTS ARE SET AND WE LEAVE NOVEMBER 20TH AND COME BACK DECEMBER 1ST. MERCY MEDICAL AIRLIFT WAS VERY HELPFUL WITH GETTING SKY AND I FREE TICKETS TO CALIFORNIA AND BACK. PEOPLE ARE VERY GENEROUS DONATING AIRLINE MILES.
SKYLAR HAD A GREAT BIRTHDAY WEEKEND. FRIDAY THE 4TH WAS THE BIG 5 YEAR OLDS DAY AND HE CELEBRATED THE WHOLE WEEK. HE WENT OVER TO GRAMMYS AND THERE WHOLE FAMILY WENT SWIMMING AT THE HOLIDAY INN. ITS REALLY NICE AND THERE ARE ARCADE GAMES AND PUTT PUTT RIGHT THERE NEXT TO THE POOL. GRAMMY MADE A TREASURE HUNT FOR HIM TO FIND HIS PRESENTS WHEN HE GOT THERE. ON SUNDAY JOHN ADAMS DAD GOT THE 4-H CAMP FROM A FRIEND FOR THE DAY. SO ADAMS FAMILY AND A COUPLE FRIENDS PLAYED KICK BALL AND MADE SMORES. IT WAS A GREAT WEEKEND. WE WILL BE SPENDING THANKSGIVING AWAY. WHICH GIVES ME AN IDEA IF THERE ARE FAMILY HOUSES AROUND THE AREA AND YOU LOVE TO COOK TRY TO SEND SOME TURKEY THERE WAY. I MAY TRY TO ATTEMPT TO MAKE A TURKEY, BUT MY MOM HAS ALWAYS BEEN THE EXPERT AND I'M SURE THE FAMILY HOUSE DOESNT WANT TO BE BURNT DOWN. HOPE EVERYONE IS SPENDING THERE DAYS TO THE FULLEST AND KEEP UP ALL OF YOUR PRAYERS FOR THESE KIDS FIGHTING. UNTIL THE NEXT UPDATE GOD BLESS!KELLY

Monday, October 31, 2005 11:06 AM CST

UPDATE ON TUESDAY- WE JUST FOUND OUT WE WILL BE LEAVING FOR CALIFORNIA ON NOVEMBER 21ST. THIS TREATMENT WILL INTERFERE WITH MAKE A WISH SO WE ARE RESCHEDULING. ARE FIRST TRIP WILL BE FOR 10 DAYS. SO WE WILL BE OUT OF TOWN FOR THANKSGIVING. THE GOOD THING IS HE ONLY HAS TO BE IN THE HOSPITAL FOR OUT PATIENT, SO WE WILL ENJOY MOST OF OUR DAYS. HE IS ALREADY EXCITED ABOUT SEEING THE OCEAN AGAIN. WE WILL UPDATE WITH THE NEXT DATES AS SOON AS WE KNOW THEM.
WE HAVE BEEN ENJOYING THE WEATHER. ADAM GOT OFF WORK EARLY ON FRIDAY AND WE HEADED OUT TO NEBRASKA CITY. SKY LOVES TO STAY AT THE LIED LODGE AND SWIM. SINCE HE IS STILL ON FLUIDS THEY SHOWED US HOW TO ACCESS HIS PORT SO HE COULD GO SWIMMING WHILE WE STAYED THERE. SATURDAY WE SWAM EARLY THEN WATCHED A LITTLE OF THE HUSKERS PLAY. CHIP HIS FAVORITE HORSE WAS THERE SO WE WENT ON A CARRIAGE RIDE. THE MAN WHO DOES THE CARRIAGE RIDES ALWAYS LETS SKY UP FRONT WITH HIM TO HELP WITH THE HORSES. THEN WHEN IT GOT DARK WE GOT ON A HAY RACK RIDE AND TOLD STORIES AND MADE SMORES. WHAT A FUN FILLED DAY. SUNDAY WE WENT TO A PUMPKIN PATCH AND MET THE NICEST PEOPLE. THEY TOOK US ON A HAY RACK RIDE AND WE ATE APPLES AND PLAYED WITH KITTENS. THE PLACE WAS EMPTY AND WE JUST ENJOYED WALKING AROUND. THEN ON OUR WAY HOME WE STOPPED OUT AT THIS HOUSE THAT HAS DONKEYS. THERE WAS A BRAND NEW BABY DONKEY THAT WE GOT TO PET. I THINK I MAYBE ENJOYED IT BETTER THEN SKY. WE GOT HOME LATE AND GOT OUT SKYLARS COSTUME SO IT WOULD BE READY FOR TODAY.
UNMC HAD TRICK OR TREATING TODAY SO WE WENT UP THERE AND MET GRAMMY AND DAD. HE IS A RED POWER RANGER AND THE CUTEST ONE OUT THERE. HE WENT OVER TO GRAMMIES TO MAKE GOODIE BAGS FOR THE KIDS. WE LOVE HALLOWEEN.
FOR THE CALIFORNIA INFO WE DONT KNOW DATES YET. THE MAKE A WISH TRIP HAS BEEN SCHEDULED FOR DEC.11TH TO THE 17TH. WE ARE JUST HOPING THAT WORKS WITH CALIFORNIA. IF NOT WE WILL HAVE TO CHANGE DATES. THAT FALLS ON MY BIRTHDAY THOUGH SO I HOPE I GET TO SPEND IT IN THE MAGICAL WORLD WITH MY FAMILY. THANKS FOR CHECKING IN. PLEASE KEEPS US IN YOUR PRAYERS AND HAVE A HAPPY HALLOWEEN. KELLY

Monday, October 17, 2005 12:27 AM CDT

SKYLAR HAS BEEN A VERY BUSY KID LATELY. THE THURSDAY NIGHT DINNER WITH THE MAVERICKS WAS GREAT. WE SAT AT THE TABLE WITH ALL THE PLAYERS AND HAD STEAK DINNER(WHICH IS SKY'S FAVORITE). THEY GAVE HIM A JACKET AND A COUPLE BOOKS ABOUT THEM ALL SIGNED BY THE WHOLE TEAM. FRIDAY AT THE HOCKEY GAME WE GOT TO SIT RIGHT BEHIND THE TEAM. SKY WENT OUT ON THE ICE AFTER THE FIRST ROUND AND GOT HIS PUCK IN HIS THIRD TRY. EVERYONE CHEERED. HE IS SUCH A HAM! WE HAVE SOME GREAT PICTURES OF IT THAT WE WILL POST SOON. THE WEEKEND WAS GREAT WITH THE WEATHER. WE WERE OUT SIDE PLAYING BALL AND HIDE N SEEK AS MUCH AS POSSIBLE. GRAMMY AND DAD JUST PICKED HIM UP TO GO TO THE ZOO TODAY. THEN TOMORROW NANNA AND I ARE TAKING HIM TO THE PUMPKIN PATCH. HE DESERVES ALL OF THE FUN HE CAN GET. WE STILL HAVE NO PLANS WITH MAKE A WISH OR CALIFORNIA BUT AS SOON AS WE KNOW ANYTHING I WILL POST IT. UNTIL THEN KEEP UP THE PRAYERS AND ENJOY THE WEATHER! KELLY

Wednesday, October 12, 2005 6:59 PM CDT

THE SURGERY ON MONDAY WENT WELL. WE HAD TO BE THERE AT 6 AM AND THE SURGERY DIDNT START UNTIL 7:30, BUT DR. RAYNOR WAS THERE AND WE LOVE HIM. AN HOUR LATER HE WAS WAKING UP. HE IS THE CRABBIEST LITTLE THING AFTER SURGERY. HE KEPT TELLING THE NURSE SHE WAS THE WORST NURSE EVER AND THAT I WAS THE WORST MOTHER EVER. ADAM THEN SHOWED UP AND RESCUED US FROM THE MEAN BEHAVIOR AND GOT HIM TO LAUGH. WE THEN WENT HOME SNUGGLED AND FELL ASLEEP CUDDLING. OUR FAVORITE THING TO DO. HE WOKE UP VERY HAPPY HIS PORT WAS BACK IN AND APOLOGIZED FOR THE BAD BEHAVIOR. THEY SENT US HOME WITH PAIN RELIEVERS BUT HE NEVER NEEDED ANY. HE WAS PLAYING ALL NIGHT UNTIL WE MADE HIM GO TO BED. I THINK WE SHOULD LABEL A CARTOON SKY MOON THE SUPER HERO.
WE HAVE CLINIC TOMORROW MORNING TO CHECK COUNTS. HE IS STILL ON FLUIDS AT NIGHT FOR 12 HOURS, BUT MUCH HAPPIER THAT THEY ARE GOING THROUGH HIS PORT AND NOT HIS HICKMAN. THE MAVERICKS HOCKEY TEAM PICKS A FEW KIDS FROM UNMC EVERY YEAR TO COME EAT ON THURSDAY AT A BUFFET DINNER AT THE QWEST THEN FRIDAY THEY GET TO GO TO THE GAME. SOMETIME DURING THE GAME SKYLAR GETS TO GO OUT ON THE ICE AND MAKE A SHOT. HE IS PRETTY EXCITED WE WENT OVER TO ADAMS PARENTS HOUSE AND PICKED UP A HOCKEY STICK AND PUCK BECAUSE HE WANTS TO PRACTICE. HE IS SUCH A BOY.
JUST TO LET YOU ALL KNOW THINGS HAVE BEEN GOOD. SKYLARS SPIRITS ARE UP AND SO ARE ALL OF OURS. WE ARE EAGER TO SEE IF THIS TREATMENT IN CALIFORNIA WILL WORK,BUT SINCE IT ISNT AVAILABLE UNTIL NOVEMBER WE ARE JUST ENJOYING OUR DAYS. THANKS FOR CHECKING IN ON US. KELLY

Friday, October 7, 2005 10:46 AM CDT

IT HAS BEEN A FULL WEEK OF HOSPITAL LABS. SKYLARS CALCIUM WAS VERY HIGH ON MONDAY AND HE STARTED HAVING A LIMP TO HIS WALK WITH HIS RIGHT LEG. THEY STARTED US ON 24 HOUR FLUIDS THAT DAY TO HELP BRING THE CALCIUM DOWN. TUESDAY SKY COULD BARELY GET OUT OF BED BECAUSE OF HIS LEG. THEY TOOK AN X-RAY AND FOUND SWELLING AROUND THE KNEE AND NO SIGN OF TUMORS, WHICH OF COURSE IS WHAT MY HEAD KEPT THINKING IT WAS. THE KIDNEY DOCTOR WAS ON TOP OF THE CALCIUM PROBLEM AND SAID SHE WAS SURE IT WAS THE CALCIUM THAT WAS CAUSING THE PAIN IN HIS LEG. THEY GAVE US LASICS AND KEPT US ON 24 HOUR FLUIDS FOR THE DAY. THE NEXT DAY SKY WOKE UP AND FIRST THING SAID HIS LEG DIDNT REALLY HURT. THANK GOD! WE WENT TO CLINIC AND HIS CALCIUM WENT DOWN A GOOD AMOUNT. HE WENT OVER TO GRAMMYS THAT NIGHT AND WHEN HE CAME HOME HE WAS DANCING ON HIS LEG. THURSDAY SHOWED LOW POTASSIUM, BUT HIS CALCIUM WAS STILL ON ITS WAY DOWN. THE FLUIDS WERE PUT DOWN TO 12 HOURS AT NIGHT AND THEY ADDED SOME POTASSIUM TO THE BAG. TODAY WE GO IN AGAIN FOR COUNTS THEN DOWM TO PRE SURGERY TO CHECK HIM IN FOR MONDAY. HE HAS DECIDED HE WANTS HIS PORT BACK IN SO THEY ARE TAKING OUT HIS HICKMAN AND PUTTING THE PORT BACK IN ON MONDAY. HE WANTS TO BE ABLE TO SWIM WHEN WE GO TO DISNEY WORLD AND HE HATES HAVING TO CHANGE HIS DRESSING WITH HIS HICKMAN. GOOD ENOUGH REASONS FOR ME, WHAT EVER MAKES HIM HAPPY.
CALIFORNIA CALLED US AND SAID THE FENRETINIDE HE IS GOING TO START IS STILL BEING WORKED ON WITH ALL THE PAPER WORK. SKY WILL BE THE FIRST KID TO GET IT AT UCSF. THEY SAID SOME TIME IN THE MIDDLE OF NOVEMBER IT SHOULD BE READY. WE WILL TRAVEL OUT THERE FOR EIGHT DAYS THEN GO BACK OUT 3 WEEKS LATER FOR THE SECOND TREATMENT. THEN THEY SEND US HOME WITH THE MEDICINE UNTIL HIS 6 MONTH TREATMENT AND WE GO BACK FOR MORE STUDIES. THEY SAY HE SHOULD BE ABLE TO GET ALL OF HIS SCANS DONE HERE IN OMAHA. IF HE TAKES TO THE MEDICINE HE CAN BE ON IT FOR UP TO 2 YEARS. LETS PRAY THIS IS THE RIGHT STEP FOR THE CURE.
THE MAKE A WISH PEOPLE CALLED AND HIS BIRTHDAY IS NOT AVAILABLE FOR GIVE THE KIDS THE WORLD. HOPEFULLY WE WILL KNOW A DATE SOON AND WE WILL POST IT. THANKS FOR CHECKING IN. KELLY

Monday, September 26, 2005 2:40 PM CDT

Wed. update
PLEASE EVERYONE PRAY FOR CAVION'S FAMILY. CAVION PASSED AWAY THIS MORNING,AFTER A LONG ROAD OF FIGHTING. HE HAS AMAZING PARENTS THAT COULD USE SOME EXTRA PRAYERS. IF YOU WOULD LIKE TO STOP BY HIS PAGE GO TO NE/CAVION.

WE HAD CLINIC TODAY AND SKY'S COUNTS ARE GREAT! HE HASNT NEEDED PLATELETS OR BLOOD FOR WEEKS. WE HAVE STARTED HIM ON A DRUG CALLED RETNOIC ACID WHICH IS SUPPOSED TO HELP TUMORS MACHURE AND STOP GROWING. THIS IS REGULAR PROTOCOL AFTER STEM CELL TRANSPLANT. HOWEVER YOU ARE SUPPOSED TO HAVE MINIMAL DISEASE WHICH HE HAS A LITTLE BIT MORE THEN THAT. OUR DOCTOR OUT IN CALIFORNIA WANTS US TO TRY FENRETINIDE WHICH IS KIND OF THE SAME BUT A LITTLE BIT STRONGER AND STILL EXPERIMENTAL. SO WE WILL BE FLYING BACK OUT TO CALIFORNIA AS SOON AS SHE GETS THE PAPER WORK DONE FOR IT. AS SOON AS WE START THAT WE WILL STOP THE RETNOIC ACID. THIS IS THE ONLY THING WE WERE OFFERED BESIDES ANOTHER CHEMO. I REALLY DON'T WANT SKY ON ANOTHER CHEMO SINCE THEY HAVE NEVER DONE ANYTHING FOR HIM. SKY IS SCHEDULED FOR A CT OF HIS HEAD AND A BONE MARROW ASPARITE ON THURSDAY MORNING JUST TO MAKE SURE THERE IS NO SIGN OF DISEASE IN THE BONE ONCE MORE. THE DOCTOR IN CALIFORNIA ASKED FOR THESE BECAUSE OF THE NEW MEDICINE SHE WANTS TO PUT HIM ON. ONE MORE THING TO HOLD MY BREATH ABOUT.
HIS AUNT JENNY IS COMING IN TOWN THIS THURSDAY SO WE ARE VERY EXCITED. FRIDAY WE ARE TAKING NANA, JENNY AND HER FIANCE TERRY TO THE ZOO. SKY LOVES TO EAT IN THE RAINFOREST CAFE. IT IS ALSO ADAMS BIRTHDAY SATURDAY SO WE ARE COOKING OUT AND HAVING CAKE AND PRESENTS. WE HAVE BEEN SO BUSY THAT WE ARE CELEBRATING MY SISTERS BIRTHDAY, MY DADS, ADAMS AND MY SISTERS FIANCE'S BIRTHDAY ALL ON SATURDAY. I HOPE EVERY ONE HAS A WONDERFUL WEEK AND KEEP UP THE PRAYERS FOR THESE DRUGS TO WORK. THANKS -KELLY-

Monday, September 19, 2005 12:36 AM CDT

FRIDAY: JUST WANTED TO LET YOU KNOW WE ADDED A FEW NEW PICTURES. WE HAVE A FEW MORE TO ADD BUT OUR COMPUTER WASNT WORKING RIGHT LAST NIGHT.
What a wonderful weekend. Thanks for all the prayers to keep us strong it worked. Friday I was so crushed from the news Adam asked if there was anything we could do to keep are minds free of sad thoughts. We headed for Adventure land. Sky was so excited! We booked two nights at a hotel called up our good friends Kelly and Dave and took off for the weekend. We didn't get there until 10:45 but sky was so excited it still took us an hour to get him to bed. His tpn started to beep at 8:30 and he was up pulling our arms and jumping around the room until we left. The day was great high was 80 and the wind was perfect. We arrived at 10:30 and didn't leave until it closed at 7pm. He did a lot of little kid rides but he loved the water rides. He even went on the log ride that is hard for me to go on because of the hill you go down. The next day was a little more hot but a lot less people. We were just running onto rides. All of us got a little more brave and by the end of the day we had concord every ride, eaten ice cream, corn dogs, and even got our pictures taken in the saloon period. Adam won us a 6 foot monkey that barely even fit in the car for the ride home. We told sky he had to stay there so we could take the monkey home and we would be back for him later. He laughed pretty hard. He went the whole weekend with out getting sick. He ate and drank everything he saw. It was exactly what we all needed to get away. No 4 year old should have to be cooped up in a hospital for 7 weeks. So we wooped up the weekend.
Grammy and dad just picked him up for his CT this afternoon. I am not guessing it will tell us anything different, but it will give us measurments of the tumors. The doctors are getting there heads together and figuring out what is next. Meanwhile we are going to be planing his Make a wish trip to Disney World. We are pumped to take him there because if this weekend was fun Disney World will just blow are minds!! Thanks for checking in. -Kelly-

Friday, September 16, 2005 3:15 PM CDT

WE JUST FOUND OUT THE RESULTS. SKYLAR'S TUMORS ARE UNCHANGED. THEY ALL STILL TAKE UP MIBG, WHICH MEANS THEY ARE STILL ACTIVE. HE ALSO HAS TWO IN THE NECK, WHICH IS NEW TO US BUT THEY SAY HE HAD THEM LAST SCANS. SO DR. GORDON IS LOOKING IN WITH OTHER DOCTORS ON A NEXT STEP. ANY STEP TAKEN WILL BE EXPERIMENTAL. IF YOU LOOK TO THE BRIGHT SIDE ONLY THE EXPERIMENTAL STUFF HAS WORKED ON HIM. HE JUST LIKES TO KEEP ALL OF US ON OUR TOES. ITS A HARD DAY FOR ME BECAUSE I AM PLAYING WITH THIS BEAUTIFUL LITTLE BOY WHO HAS NO CLUE TO HOW BAD THIS CAN BE. ALL HE HAD TO SAY WHEN I TOLD HIM HE STILL HAD TUMORS WAS CAN I PUT MY PORT BACK IN SO I CAN GO SWIMMING. WE WILL KEEP FIGHTING NO MATTER WHAT. HE LOOKS WONDERFUL AND FULL OF ENERGY. KEEP UP THE PRAYERS THIS WEEKEND NOT ONLY FOR SKY BUT FOR GOD TO KEEP OUR FAMILY STRONG.-KELLY-

Monday, September 12, 2005 11:07 AM CDT

JUST A QUICK UPDATE. SKY HAS BEEN DOING MUCH BETTER. HE HAS BEEN STARTING TO EAT VERY WELL. HE HAS BEEN CRAVING MEAT OF ANY KIND. HE IS GETTING SICK LESS AND LESS. THANK GOD! ARE BIG SCAN IS THIS WEEK ON WEDNESSDAY, HIS MIBG SCAN. WE GOT RESULTS FROM THE CT OF THE LIVER AND THERE ARE TWO SPOTS THERE STILL. THEY ARE IDENTICAL TO THE SCAN OF THE LIVER BEFORE TRANSPLANT. IT COULD BE GOOD NEWS THOUGH SINCE THERE IS NO CHANGE THEY COULD JUST BE DEAD. THE MIBG WILL SHOW US IF ANY OF THE TUMORS ARE STILL ACTIVE. PLEASE,PLEASE,PLEASE PRAY FOR SKY TO BE DONE WITH THIS HORRIBLE DISEASE. I WILL UPDATE AS SOON AS I HAVE RESULTS. MOST LIKELY NOT UNTIL THURSDAY. UNTIL THEN PRAY SKY GETS TO GO BACK TO JUST BEING A 4 YEAR OLD. -KELLY-

Monday, September 5, 2005 8:47 PM CDT

WE HAVE BEEN HOME FOR ALMOST A WEEK AND THINGS ARE GOING WELL. WE HAD A HOME HEALTH NURSE OVER TO SHOW US HOW TO HOOK UP HIS TPN(NUTRITION). FOR 12 HOURS A DAY HE IS ON TPN. SKY IS VERY GOOD AT LETTING US HOOK HIM UP AND CARRYING IT AROUND. HE HAS STILL BEEN GETTING A LITTLE SICK HERE AND THERE BUT IT IS GETTING BETTER. HE REALLY HASN'T ATE ANYTHING SINCE STEM CELL TRANSPLANT.
FOR THE FUN NEWS HE LOVED THE HOUSE WHEN HE CAME HOME. ADAM DID A GREAT JOB AT CLEANING AND REBUILDING THE HOUSE. SKY LOVED HIS TENT THAT WAS MADE FOR HIS BUNK BED. EVERYTHING THAT WAS DONE HIS FAVORITE THING IS HIS SPIDERMAN TRASH CAN. IF ONLY WE KNEW THAT WAS ALL HE WANTED. THE DOGS HAVE REALLY MISSED US. THEY HAVE BEEN NEEDING A LOT OF ATTENTION. SKY HAS BEEN KEEPING THEM RUNNING AROUND. THANKS FOR ALL THE PRAYERS YOU SENT OUR WAY. WE ARE GETTING A LITTLE BETTER EVERY DAY. KELLY

Wednesday, August 31, 2005 1:25 PM CDT

We are home!!!!!!!!!!!!!!!!!!!!!

Tuesday, August 30, 2005 10:40 AM CDT

SKYLAR HAS BEEN IMPROVING LITTLE BY LITTLE. HE IS FULL OF ENERGY FOR A GOOD 4-5 HOURS A DAY. HE HAS BEEN GETTING SICK EVERYDAY STILL, SO HE IS A LITTLE DEHYDRATED. THEY ARE TELLING US WE GET TO GO HOME TOMORROW. WE'LL SEE BECAUSE WE HAVE BEEN HEARING THAT SINCE LAST FRIDAY. WE WILL BE COMING HOME WITH TPN HIS NUTRITION. HOPEFULLY HE WILL ONLY HAVE TO BE ON IT AT NIGHT TIME. WE CANT WAIT TO GET HIM HOME. ADAM HAS PAINTED HIS ROOM AND A FRIEND MADE A SPIDERMAN TENT THAT FITS OVER HIS BED. KEEP IT A SECRET THOUGH BECAUSE SKY DOESNT KNOW ABOUT IT. THIS HAS BEEN THE HARDEST THING WE HAVE GONE THROUGH SINCE HE WAS DIAGNOSED AND I FEEL SORRY FOR EVERYONE WHO HAS GONE THROUGH OR IS GOING TO GO THROUGH THIS. THE GOOD THING IS THE MORPHINE DOSENT LET HIM REMEMBER A LOT OF IT. IF YOU WILL THERE IS A VERY SICK KID UP ON THE FLOOR WITH SKY HIS NAME IS CAVION AND HIS FAMILY IS BATTLING VERY HARD THROUGH HIS STEM CELL TRANSPLANT. IF YOU WANT TO VISIT HIS SITE GO TO CARINGBRIDGE/NE/CAVION. PLEASE KEEP UP THE PRAYERS.-KELLY-

Friday, August 26, 2005 11:51 AM CDT

HELLO EVERYONE WE ARE GETTING CLOSE TO COMING HOME. TODAY WE STOPPED HIS MORPHINE! HE WILL BE TAKING TYLENOL WITH CODEINE. HE HAS STARTED TAKING EVERYTHING BY MOUTH PRETTY MUCH WHICH IS GOOD BECAUSE THAT HELPS HIM COME HOME. I WISH YOU ALL COULD HAVE SEEN HIM LAST NIGHT. ADAM AND I SNUCK HIM OUT OF THE HOSPITAL AROUND NINE PM AND SAT ON A BENCH DRINKING FRUIT PUNCH. THEN HE DECIDED TO WALK AROUND AND WE HAD SO MUCH FUN. SKY AND ADAM KEPT HIDING BEHIND CARS IN THE GARAGE AND SCARING ME WHEN I WOULD COME CLOSE. THEN WE RODE THE GLASS ELEVATORS A FEW TIMES UP AND DOWN THROWING ARE HANDS IN THE AIR. WE DIDNT GET HIM BACK TO THE ROOM UNTIL 1130 LAST NIGHT. HE ALSO GOT OUT OF BED LAST NIGHT AND DROVE HIS REMOTE CONTROL INCREDIBLE CAR AROUND THE FLOOR. YEAH SKYLAR IS SLOWLY BUT SURELY BECOMING HIM SELF AGAIN. WE WERE TOLD TODAY THAT IT WOULD BE MORE LIKELY THAT HE WILL BE COMING HOME MONDAY OR TUESDAY, WHICH I WAS PRAYING FOR THIS WEEKEND BUT WHAT IS A FEW MORE DAYS. WE ARE GETIING A LOT MORE SMILES AND HUGS THESE DAYS SO THANK YOU ALL FOR THE PRAYING IT HAS REALLY HELPED HIM FIGHT. WE WILL UPDATE SOON HOPEFULLY HE WILL BE HOME. THANKS FOR CHECKING IN.-KELLY-

Saturday, August 20, 2005 6:04 PM CDT

Day 28 - Tuesday - Things seem to be getting better a little at a time. Skylar went for a wheel chair ride last night, and was making a few jokes and smiling today. If it's one thing I've learned this last 14 months it's never to be completely optomistic, so I'll say we are cautiously optomistic that Sky's recovery will start to speed up any day now and he will be home soon. Please continue to pray for not only Skylar, but for all the kids and their familys who are touched by this monster. Thanks Cris

Day 25 - The VOD seems to be resolving slowly, but definetely headed in the right direction. Sky looks much better today, his liver function is better, his skin isn't yellow and the whites of his eyes are nearly white. His belly seems about the same. He's gained about 10 pounds of fluid since he was admitted. He was awake for most of the time Drew and I were there today. He was up out of bed for about an hour, still doesn't want to play , but will watch TV or listen to a story. I don't think it's too early to say things are looking up. We just have to be patient. Thanks for your prayers and encouragement. Cris

Thursday, August 18, 2005 6:57 PM CDT

Day 23 - The good news is that the VOD is not any worse. The bad news is that it's not any better. An ultrasound is scheduled for tomorrow, the doctors aren't expecting much change from the last one. Sky's tummy is still huge and he is still in a lot of pain, but is awake more and not quite so crabby. Ryan Vodicka stopped in to see him today, Ryan had a stem cell transplant at NIH a couple of months ago. He still has to be really careful of infections, but looks terrific. Sometimes Skylar worries about things, but doesn't talk about them (one day last week he told us he was worried his tummy was so big because the tumor was back) so I think it was good for him to see someone who has been through all of this and got well. Drew,Kelly, & Adam continue to hang in there. Please keep praying for Sky and all of those kids out there fighting so hard. Cris

Monday, August 15, 2005 8:16 AM CDT

Day 21 - Tuesday - Sky's tummy is about the same. He's still in a lot of pain and using morphine regularly, but he looks a little better and is awake more. He's even asking for specific movies and stories. His liver function is about the same as it has been. We just have to wait until the VOD resolves itself. I know I've said this many times before, the kids who fight this monster are true heros. Skylar's strength and determination continue to amaze me. Thanks again to everyone for checking in on Sky, and special thanks for your prayers and encouragement. Cris

Day 20 - Not much change over the weekend. Sky had a chest xray yesterday and will have another ultrasound at the beginning of this week. His sats keep dropping so he has oxygen when he needs it. He's still in a lot of pain, but has a morphine pump now, so at least he feels he has some control. I'm on my way to the hospital now, I'll update as soon as I get home. Sky's doctors are still confident the VOD will take care of itself. I can't tell you all how much I would like to walk into that room and see a big Skylar smile. Keep up the prayers. Cris

Thursday, August 11, 2005 5:11 PM CDT

Day 17 - Friday - Another really hard day. There's not much change. No change on the ultrasound today (since Wednesday evening) but Skylar is extremely uncomfortable and agitated. He's having some trouble breathing this evening. I think his belly is so big it's pushing on his diaphram. Please continue to pray for Skylar and for Kelly, Adam, Drew and the rest of us who love him so much to have the strength to help him through this. Cris

Day 16 - Last night and today have been really hard for all of us. Sky's abdominal swelling and pain are increasing. They've upped his morphine which helps some. We have the results of the latest ultrasound, the abdominal swelling and pain are caused by venous occlusion, caused by the chemo he had before his stem cell recovery. The vessel going from Skylar's liver is too narrow to work efficiently, as it pumps, some of the fluid is spilled out into his tummy. The vessel from his spleen is actually causing some backflow. He's getting diuretics and protein to help reduce the abdominal swelling. Hopefully he will get some pain relief. Apparently there isn't much that can be done, except treat the symptoms and hope the vessels repair themselves. His doctors are optomistic that will happen, but it could take a while. Please say an extra prayer for Skylar tonight. Thanks Cris

Sunday, August 7, 2005 7:24 PM CDT

Day 15 - Sky still has a lot of tummy pain, a CT scan didn't show anything to be really worried about, but since he's in so much pain, he had another ultrasound this afternoon to check the blood flow in his abdomen to make sure there's no problem, we don't have those results yet. He's awake a lot more now and even walking a little in the hall. Today The Cat in The Hat visited and read him a story. Skylar being Skylar, was hoping to find Thing one and Thing two to get into mischief with.....Now that Sky's getting better there's more time to think about what kind of results he will have from this treatment and what the next step will be......the never ending story of cancer. Thanks for your thoughts and prayers, as always they are much apprciated. Cris

Day 12 - Skylar is recovering a little
at a time. He looks so much better than a couple of days ago. He's awake more, watching a little TV and playing video games for short periods of time. He still has a lot of tummy pain, but we can see him getting better everyday. I read a disturbing article from the July 20 USA Today. It was all about how little research for a cure for childhood cancer there is. The numbers just don't pan out for the drug companies. There are ONLY about 13,000 cases diagnosed a year. I don't know what the answer is, but I do know we need to make people more aware of how devastating this monster is. Cancer is the leading cause of death by disease in children. 2500 children under the age of 20 lose this battle each year. In this country 42 children will be diagnosed with cancer every school day - 10 will not live. Countless children are disabled from cancer treatment. September is childhood cancer awareness month. Please write to your governor asking him/her to proclaim September as Childhood Cancer Awareness month in your state. For more information go to curesearch.com. Thanks again for your prayers and encouragement it really makes a difference. Cris

Wednesday, August 3, 2005 5:37 PM CDT

Day 11 - Counts still on the rise, and Skylar acatually laughed out loud at his dad this morning. He played video games with mom and Dude last night and watched cartoons this morning. He's still having a lot of abdominal pain. Hopefully that will be gone soon!!!! Thanks again for your notes of encouragement, they really mean a lot. Cris

Day 10 - HURRAY!!! Sky's counts have
gone through the roof...well not exactly through the roof, but it sure seems like it...ANC 1200, white count 2.6!!! We are all practically dancing in the room. Yesterday was such an awful day, you can imagine how pleased I was when I got to the hospital this morning to find everyone sleeping peacefully. Sky looks terrific, a lot of the swelling has gone down and he actually wanted to read a story and take a few sips of "purple soda". I know there still is a long way to go, but today we are so encouraged. He is so strong and such a fighter, we will beat this monster. Thank you all so much for your encouragement and prayers. Cris

Day 9 - Sky's ANC is 200 and his white count is at 6...platlets remain under 10. I think last night and today were the worst since he's been in the hospital. Even though we were told how bad it could get, I never imagined it would be this bad. It really breaks my heart to think that he has to go through this, Kelly said today she just wants to scoop him up and run away. Hopefully he will start to feel better soon. Kelly doesn't have much time to update the journal, but she does read the guest book. I think I can speak for Drew, Kelly, Adam, and the rest of our family when I say thank you for your encouragement and prayers and especially thank you for caring so much about Skylar. Cris

Saturday, July 30, 2005 9:55 PM CDT

Day 8 - Skylar has counts, his white count was at 2 this morning!!! I hope he starts to feel better soon. Cris

Day 5 - These last two days have been
really tough. Sky's on morphine and phenergan most of the time so he mainly sleeps, but he's pretty restless. Yesterday he did get up for a short time to play trucks with Kelly and Adam. They said he even tried to laugh a little. His fever went to 105 today. He's so brave, he tried to take tylenol but vomited it right back up a couple of times, he was finally able to keep some down this afternoon and his fever went down to around 103. If his fever stays this high, Dr. Gordon wants to start an antifungal drug tomorrow. These drugs apparently can do kidney damage, his kidney just started working at 100He has a lot of tummy pain too. The sores in his mouth and throat are worse, but he's still breathing on his own. I hate to think that we have several more days of this before those cells start to kick in. This is all so frightening, but Dr Gordon says Sky is reacting about par for the course. All of the caregivers at UNMC have been really great. (Of course we really miss everyone we know so well at Children's). Thanks for visiting Sky's site and for your encouraging words, everyone in this big extended family appreciates them. Please continue to pray for Skylar and all of the other kids fighting this monster. Cris

Wednesday, July 27, 2005 10:03 PM CDT

Day 3 - The mouth sores have really taken over. Sky's fever is up, he's getting morphine regularly now, so most of the time he's asleep. It's heartrenching to have to wake him up for mouth care. Kelly,Adam,& Drew are holding up pretty well. I'm sure this weekend will be even harder, then hopefuly at the beginning of next week things will start to improve. Thanks for your prayers and moral support we all need both right now. Cris

Check out the picture of "Dash". (My computer skills are not the best, you have to center the page to see the picture)

Day 2 - Sky is doing really well. His kidney function is increasing, but he has started to have mouth sores and a lot of diarrhea. He is absolutely amazing. He looks good and he remains "Sky", as a matter of fact if you would happen to be on the 7th floor at UNMC at just the right moment..you might see Dash from the Incredibles, but then you might not because he is so fast. Today when Drew and I went into the room after Sky's mouth care he was all decked out in his "Incredible" costume - including gloves, boots, and a mask. It was quite a task for the nurse to get him into the whole outfit before we came back into the room. As if that wasn't enough he surprised us again! After the second round of mouth care he came out of the room as Dash -this time with a mask so he could make a quick "dash" to the toy chest. (Mommy and Adam were there by then so we all had a good laugh). After one quick walk to the nurses station and back he was ready to lay back down, but it really did our hearts good to see him acting so much like himself. I know this week will be really hard, but we are all working together to get through it. The nurses on the floor have been really great, making this as easy as possible. Your notes of encouragement and your continuing prayers for Sky's speedy recovery are really appreciated. Please continue to pray for all the kids out there fighting this monster, with special prayers to Tanner who's going to Loma Linda next week-hopefully to start the next phase of her treatment. Cris

Monday, July 25, 2005 5:59 PM CDT

Today is day 0, Skylar was given his stem cells today. We've been waiting for this day since last October when they were harvested. The frozen cells are thawed in a warm water bath and given like a blood transfusion. The preservative smells to me like burned cream corn. The nurses on the floor say that the odor will last a few days. Sky is really starting to have the side affects we've been told about. All of the Dr's and nurses at UNMC are doing everything they can to help him, they tell us this will be his worst week. The mouth cleaning remains a huge issue, he really hates it, the nurses are doing it now - last night they had to hold him down to finish. It's really hard for Kelly, Adam, Drew and all of the rest of the family to watch him go through this, we are all focusing on the end....our prayer is that he will be CANCER FREE. We tell him everyday that he is one of the greatest of all the Super Heros. I will try to keep the website updated until Kelly can get to a computer, Sky doesn't want her to leave him now. As always, she's being very strong and a Super Hero in her own right. Please continue to pray for all the kids who are fighting this monster, there are two who really need special prayers, Tanner who is waiting to find out where her next battle will be and Cevian (I appologize for the spelling) with ALL, who is in the transplant unit right now. Your messages and prayers for Skylar are really appreciated, our families all believe the power of prayer has helped to get Skylar this far and will take him to recovery. Cris

Monday, July 18, 2005 5:22 PM CDT

July, 21..Sky's on day three of the chemo regimen. He's starting to feel the effects, with tummy pain and nausea. He hasn't eaten much today, and really fights having his mouth cleaned out, it's an ordeal for all of us. There are three solutions twice a day and two solutions two other times during the day. I was in tears right along with him today. Thank goodness Drew and I only have to do it once. Kelly and Adam get the other three times. Hopefully the next couple of weeks will go by quickly and his recovery will be fast. We need to focus on Skylar being cancer free. He truly is a hero, the bravest boy I know. Please continue to pray for his recovery. Thanks Cris

I wanted to write a short update until Kelly has a chance to add to the journal. Skylar was admitted to UNMC today. He had his port removed and a Hickman Catheter placed. Tomorrow he will begin four days of high dose chemo (the various drugs literally run 24 hours a day for four days). He'll get two days of rest and then get his stem cell transplant. He'll be in the hospital a minimum of four weeks. Sky has been through so much to get to this point, but now that he's here it's a little frightening. Please say an extra prayer that we are able to help him through this treatment, and that it knocks the rest of his cancer out cold...we took him to see The Fantastic Four last weekend so I have to say "IT'S CLOBBERIN' TIME". I told him it would be like The Thing stomping on his tumors. (If you saw him in clinic last week with the Thing feet and hands you know just what I mean). Thanks for all your prayers, not just for Skylar, but for all the kids fighting so hard to beat this monster. Cris

Wednesday, June 29, 2005 3:19 PM CDT

We found out some new info. Skylar has 4 tumors left in his lungs, but very small. He also has 2 tumors in the liver also small. They still take up MIBG but very little. I spoke with Dr.Matthey today and our best move is the Stem Cell Transplant. YUK!!!!! He will be at UNMC for about 4-6 weeks. She sounded very optimistic about Sky reacting well to this. We have to wait until his counts come up a little more. It sounds like it will be around the week of July 18th. If it does the job we all pray it will he could be cancer free within the year. After Stem Cell we have to wait 3 months for scans. We will have to stay busy to keep our minds clear. Meanwhile Sky is great. His counts are low and he is still getting blood and platelets every week. We keep him active with the sprinkler and playing games. He really wants to play with other kids. He is so smart because he understands why he cant play. He knows all about where his white counts and red counts need to be. He is getting that yucky shot everynight to help them come back up. What a strong kid he is. He just sits there and takes it. I will update the sight when we find out the actual dates he will be in. Please pray that this is the right treatment for Skylar. Everyone have a safe and happy 4th. Kelly

Tuesday, June 21, 2005 6:08 PM CDT

Skylars CT came back the same as his last. There are still two tumors in his lungs and two in his liver. There is a chance that the MIBG scan could show something different. Anisa said that sometimes scar tissue shows up where old tumor was. We are praying that is so. Good news is Skylar has no new tumors and what he has left hasnt grown. His MIBG is tommorow, but we may not know results until later this week.
Sorry to say our friend Haley Matthis passed away last night with her battle from Wilms. Please say a prayer for the family during this hard time. If you would like to visit her site go to ne/Haleygirl. Goodnight Haley we love you.

Monday, June 13, 2005 4:16 PM CDT

WHAT A FUN WEEKEND WE HAD. FIRST SKYLAR WENT TO THE CIRCUS ON FRIDAY MORNING. IT WAS REALLY FUN AND HE LOVED THE ELEPHANTS. WE FOUND OUT THURSDAY THAT SKYLARS COUNTS WERE STILL UP SO ANISA GAVE US TICKETS FROM IN THE ARMS OF FRIENDS. THEY ARE SO NICE SKYLAR HAS ENJOYED SO MANY FUN EVENTS BECAUSE OF THEM. THEN FRIDAY NIGHT WE WENT TO A WEDDING RECEPTION AND SKYLAR MET A LITTLE GIRL NAMED LILLY. HE IS STILL TALKING ABOUT HER. HE ACTUALLY WENT UP AND ASKED HER TO DANCE. THEY EVEN SLOW DANCED! WHAT A LITTLE MAN HE IS. AT THE END OF THE NIGHT HE ASKED ME IF HE COULD GIVE HER A HUG AND TELL HER HE ENJOYED DANCING WITH HER. OF COURSE I SAID YES AND SHE KEPT SMILING AT HIM. SHE WAS 8 YEARS OLD. IM ALREADY IN TROUBLE!
SATURDAY WAS RELAY FOR LIFE. WHAT A FUN EVENT. CHRIS SKYS GRAMMY WAS OUR CAPTAIN. THIS WAS OUR FIRST YEAR WITH THIS AND CHRIS DID A GREAT JOB. SKY GOT TO WALK THE SURVIVAL LAP AND HE HAD ON HIS PURPLE SHIRT. HE DIDNT REALLY WALK IT HE RAN THE WHOLE LAP. THIS IS SOMETHING EVERYBODY SHOULD BE A PART OF. THE WHOLE NIGHT JUST GAVE YOU A GREAT FEELING. I SNUCK AWAY FOR A FEW HOURS AND GOT SOME SLEEP BUT CHRIS WAS A TROOPER WITH HER COFFEE AND FOOD FOR EVERYONE. AT 7AM MY FRIEND KELLY,CHRIS AND I WALKED ONE MORE LAP BEFORE WE LEFT. I CAME HOME GOT A FEW HOURS OF SLEEP THEN ADAM CAME IN AND TOLD ME WE WERE HEADED OFF TO THE RENISANCE FARE. I HAVENT EVER GONE TO ONE BUT IT IS REALLY FUN. PEOPLE ARE DRESSED ALL UP AND BATTELING EACHOTHER ON THE FIELD. THEY HAD A KID AREA WHERE YOU COULD DO ARTS AND CRAFTS. SKYLAR GOT TO DUNK SOMEBODY IN WATER. THEN A TROLL CHASED HIM OVER A BRIDGE NUMEROUS TIMES. HE ALSO GOT TO SEE A MAGIC SHOW. IT IS A VERY FUN FILLED DAY. SO IF YOU EVER HAVE THE CHANCE TRY TO GO. TODAY WENT WELL HE MET HIS DAD AND GRAMMY AT CLINIC AND HIS COUNTS ARE STILL PRETTY GOOD. HIS ANC IS GOING DOWN BUT AS OF NOW HE CAN STILL FIGHT OFF INFECTION. HE THEN WENT TO GRAMMYS AND WENT SWIMMING. TALK ABOUT A SPOILED LITTLE KID. WE FOUND OUT TODAY THAT HIS CT WILL BE NEXT MONDAY AND HIS NEXT MIBG SCAN WILL BE WEDNESSDAY SO AS SOON AS WE FIND OUT WE WILL UPDATE. PLEASE KEEP UP THE PRAYERS. KELLY

Monday, June 13, 2005 4:16 PM CDT

Wednesday, June 1, 2005 10:01 AM CDT

This was the day one year ago that our little Sky was diagnosed. Here is a little update of everything he has gone through. Sky went to the doctor 3 times before the lump in his stomach was found. He had really bad fevers and they would come and go. His primary doctor was always out when we took him to be seen. Until june 1st we got in to see him and he told us he felt something. We were sent to Bergen hospital for a ultrasound and chest x-ray. They coudnt reach our doctor so the doctor there came out and asked us to come in the other room. I have forgotten some of the stuff said but remember your son has a tumor growing from his left kidney. We were then sent to Childrens Hospital. News kept getting worse. The scans showed his tumors had spread to his lungs. They were taking biopsys at the time to figure out if it was Wilms or Neuroblastoma. Two weeks later we were told that it was the worse of the two, Neuroblastoma. Then we instantly started chemo. Sky had to learn so much so quickly. After many chemos we found out sky was resistant to it. His tumors just kept growning. We went in November because of his pain level from his tumor growing. The tumor was actually sucking up Skylars blood. Every time they gave him blood his tumor would suck it up again and he couldnt keep his hemoglobin up. Dr. Thompson came in at 3am and told us they may move us to ICU because they couldnt control his bleeding. She told us there was a new drug they use on wounds that may help but she wasnt sure. I never took my arms off of my son the whole night. At 8am Dr. Thompson walked in with a smile. The new drug worked and he was rushed to surgery. Two hours later the wounderful surgen Dr. Raynor came out and told us he took out over a two pound tumor. What a wounderful day it had become. We sat in ICU for 3 days before going back up to the regular floor for recovery. Wasnt long after that we were told we had to figure something out to get rid of the tumors that had been growing in the lungs. Again they tried different kinds of chemo but they doubled in size a month and a half later. Many doors were closed in our faces. Real life didnt seem so normal. While looking for options we found Dr. Matthey. The head doctor of Neuroblastoma and she wanted us out there for the experiment Mibg. We were so nervous going for an experiment. We were so wrong it was so easy compared to Chemo and the getting sick and not eating. He was wounderful besides being radioactive. He did great at only having people in the room with him for short periods of time. Since ten of us went out there that was much easier to. His response was better then anything we had seen. A month after being home the scans showed a wounderful response. The only thing wrong was he had two new tumors in his liver. That was a mess. One of the tumors was acting funny and he had to get another biopsy done. Turns out he did that for no reason and the tumor just started to behave. Again another reason we know God is helping. Well we went out for another Mibg in May and all went wounderful. He got a little sick this time but still it is much easier then the chemo stuff. Here we are waiting for results. Skylar is feeling wounderful and life feels more normal. During this whole last year I got really close to loosing hope. Thank you to everyone who has helped us out during this very difficult time. We have met some of the most amazing people this year especially hard fighting young children. God really knows how to help out a family. I pray that this time next year I will be able to wright how long Sky has been cancer free. Thanks again for all the help through out this year. Kelly

Sunday, May 29, 2005 6:54 PM CDT

We are having an fun weekend. It started out Friday afternoon since we know his counts will be dropping soon we spoiled him a little. We took him to Fun Plex to ride go carts Friday during the day, they dont open everything until Saturday so it was nice and empty. Sky loved it, however he was a little dangerous when I let him help me with the steering wheel. Then I gave him a late nap and Sky took his mommy on a late date to a 9:30pm show of Madagascar. Adam put money in his pocket to pay for our date to the movies, but sky said it wasnt a date because he didnt drive. He is just too cute. Saturday was are neighbors birthday so he got to jump on there trampoline all afternoon. He slept very well last night. Today we are having a lazy day and watching all of are old Star Wars movies. Grammy gave him this Darth Vader mask and I am not sure if I have to tell Adam or Skylar to share more.
Tuesday we go in for counts. Im guessing we will start needing platlets this week. Sky is playing around and doing great. Thanks for all of your continued prayers. Kelly

Monday, May 23, 2005 6:39 PM CDT

We got back late Satuday night. Skylar was sick of flying. Buddy and Jack the dogs were very excited to see us back. Thanks to everyone who helped take care of them they are quite the hand full. Sky had clinic today and his counts are going down but are still good. We were told his counts would drop a little quicker this time.
We met some wonderful people out in California that were staying at the family house. It is unbelievable some of the stories you here from other families. These kids you meet with cancer are so grown up and so family oriented. I didnt realize how much I took normal life for granted.
Once again the team out in SanFrancisco was great. Skylar really gets close to them. They make you feel like you are at home. One thing that was a little different was the Bay to Breakers. I dont know if you are familiar with this but people run seven and a half miles to the ocean. They dress up in costumes and drink the whole race. Dudes mom and I were walking by these people and couldnt help but hold are mouths. We actually saw naked people walking the streets. Not anything you would see in Nebraska. Some times you think it would be nice to live there then you ride on the bus there and there is always something that happens that makes you miss home.
Skylar saw a homeless person on the street with a bunny on a leash. He loves animals so he starts to talk with the man. The man couldnt have been nicer to Sky. He let him feed the bunny grass. When Skylar saw people putting money in his cup he started to reach into his pockets and pull out his change that Nana had given him earlier to buy something with. He is such a sweet kid. He started to look for more change on the ground to give them. He never asked me why these people just sat around and people gave them money.
We have some wonderful pictures of Skylar in California that I will Post soon. Thanks for checking in and keep all of these kids and there families in your prayers. Kelly

Wednesday, May 18, 2005 11:38 AM CDT

Skylar gets out today. We are cleaning the room and waiting for his port to get heparin. Sky did wounderful. We got his scan on Tuesday to see how much radiation was taken up. He took the MIBG up great. All of the tumors took it up. So we are hoping for just as great as a reaction as last time. We cant sleep by him or stand close to him for two weeks. That is kind of hard since I haven't been able to be around him very much lately. He is jumping around right now ready to leave. We have to come back up here to get his blood checked Friday then its back to Omaha on Saturday. Its the first day we have had rain here so Sky keeps singing rain rain go away. We cant wait to get home. Thanks for checking in. Keep up the prayers. Kelly

Saturday, May 14, 2005 10:08 PM CDT

Here is a little update on Sky. Friday morning his catheter had a problem so they had to take it out and put a new one in. That one started to leak so they had to put a bigger one in. All while he was awake. They gave him some pain killers to help. Yet being a little boy it still wasnt enough. Finally they got it to work and the injection of MIBG started about 10am. He did great when we all had to leave the room. Last night was a little tough. He started to feel sick around 7pm last night. Poor Dude had to be in the room both times he got sick. Since the room is radioactive and you can only be in the room for so long he used up all of his time for two days to clean up his sickness. He then started to get jaw pain, which made him cry because he didnt understand what was going on. It was pretty rough. About 8pm he got sleepy and fell asleep for the night. This morning was much better. He spent a lot of the day with grammy,papa, and dad. Adams mom and I ran around Golden Gate park for stress relief. Then we headed off to Fishermans Wharf to eat at Bubba Gumps. The food was wonderful and a couple chocolate shops caught our eyes before we left. Sky is now watching tv and drinking gatorade out of a syringe. Things are calm and and he feels ok. He hasnt wanted to eat very much today, so hopefully tomorrow will be a better day. Please keep up the prayers. Kelly

Wednesday, May 11, 2005 8:08 PM CDT

We just got back from the beach. What a beautiful day.
Skylar was completely soaked from the water. We had to change his whole outfit when we got back. Its been a great day of fun. Skylar woke Dudes mom up at 7am and told her he was hungry(knowing mommy would tell him it was to early and to go back to bed). We finally all got out of bed and went to Golden Gate park. Dudes mom and I went for a long walk while nana and dude played with sky on the play ground. Then we decided we would get a bite to eat and go to are meeting with dr. Matthey. We love this place called Milanos. We walk in and there is papa,grammy and dad eating inside. It was great, we pulled some tables together and ate. Then we all walked up to the meeting.
What great news they had. They were just as excited to see us as we were of them. They are so happy with Skylars response. We have all sorts of opptions available for skys treatment. Dr.Matthey gave us great hope for the present and future. Just all depending on how he responds to this round. There is a door open however he responds. Thats what every one wanted to hear. Also she wasnt quite sure why that tumor started to take up mibg all of a sudden. Thank God!!!!!!!!
We left happy and got to the family house where we are staying and they supprised Adam,Drew and I with donated tickets to the premier of Star Wars. So tomorrow night you may see us on entertainment tonight or access hollywood. Sky checks into the hospital tomorrow afternoon, but the grandparents said they would help us out while we left. After all the excitment we went to the ocean. How beautiful. Sky was so happy. What a great way to spend the last day before he goes in. He just left to go to Grammys hotel to swim for the evening. Im sure he will be sleeping good tonight.
As for us we are headed to Union Square and Fishermans wharf. Hope every one in Omaha is enjoying the rain. Haha
God is taking care of us thanks for all the prayers. kelly

Thursday, May 5, 2005 1:42 PM CDT

Check out the pics from Cheeseburger. I can't seem to get them smaller, but they sure are cute. Cris

FRIDAY MORNING QUICK LADY CALLED AND TOLD US THE BEST NEWS. SKYLARS ONE TUMOR IN HIS LUNGS THAT WASNT TAKING UP MIBG IS NOW TAKING IT UP. MEANING THAT WHEN WE GO OUT TO CALIFORNIA THIS RADIATION MAY TAKE CARE OF WHAT IS REMAINING. THIS IS SO EXCITING WE WERE PRAYING FOR THIS AND DIDNT EVEN KNOW IT WOULD BE POSSIBLE FOR THE TUMOR TO START TO TAKE UP MIBG AFTER NOT TAKING IT UP IN THE BEGINING.
JUST A QUICK UPDATE. WE ARE LEAVING MAY 10TH FOR CALIFORNIA. HE WILL BE GETTING THE MIBG INJECTION ON FRIDAY BETWEEN 10AM AND NOON. WE WILL BE IN THE HOSPITAL FOR ABOUT 6-7 DAYS WHILE HE IS RADIOACTIVE. ALL OF US ARE GOING TO GO TO THE OCEAN THE FIRST DAY WE ARE THERE AND GET ARE FEET WET. WE HAVE 9 PEOPLE INCLUDING SKY GOING OUT THERE AGAIN. SKY DOES GREAT WITH THE TREATMENT SO IT ISNT HARD GOING OUT THERE THIS TIME. WE HAVE BEEN TOLD THAT SKY WILL BE RECEIVING STEM CELL TRANSPLANT ABOUT 4-5 WEEKS AFTER WE RETURN HOME. WHICH IS GOOD BECAUSE THAT GIVES HIM SOME TIME TO PLAY BEFORE HE HAS TO GO INTO THE HOPITAL FOR ANOTHER LONG PERIOD OF TIME.
ONE MORE FINGER POKE ON MONDAY BUT WE ARE DONE WITH OUR SCANS FOR THE WEEK. NOW ITS JUST ENJOY THE WEEKEND.
FOR ALL OF YOU THAT MISSED SKY LAST NIGHT HE WAS WOUNDERFUL. DREW PLAYS OPEN MIC NIGHT AT CHEESEBURGER IN PARADISE. SKY GOT UP AND SANG OLD MCDONALD WITH HIM. THERE COULDNT HAVE BEEN ANYTHING MORE CUTE. THE GUY THAT PUTS THE WHOLE NIGHT TOGETHER ASKED SKY TO COME UP AND SING WITH HIM. HE ASKED SKY IF HE KNEW ANY BROWN EYED WOMEN AND SKY POINTED TO ME. THEN EVERY TIME THE MAN SANG "YOUR MY" SKY WOULD REPLY "BROWN EYED GIRL" AND POINT. MY HEART WAS MELTING. HE COULD NOT HAVE MADE HIS MOMMY MORE HAPPY. HE GOT A WHOLE CANDY BAR TODAY BECAUSE OF IT.
I WILL TRY TO WRITE WHILE WE ARE GONE TO UPDATE. HAPPY MOTHERS DAY TO ALL

Thursday, April 28, 2005 9:17 AM CDT

4/29/05: I wanted to add my thanks to Kelly's. Your continuing prayers for Skylar are so appreciated. All of us who love him so much - his mom, Dude, his dad, nana and papa, Dude's mom and dad, and papa and I, really think your prayers have helped to get Sky this far. Please find it in your hearts to pray for Angel Jessica and her family and for Haley who is fighting for her miracle in Mexico. Cris

WE HAVE FOUND OUT THAT WE ARE HEADED FOR SAN FRANCISCO MAY 13 FOR ANOTHER ROUND OF MIBG. AFTER THAT TREATMENT WE FLY HOME AND 4-5 WEEKS LATER WE WILL BE CHECKING INTO UNMC FOR STEM CELL TRANSPLANT. IT IS A LOT OF TREATMENT COMING UP BUT I LIKE TO THINK OF IT AS SKY HAS A CHANCE TO BE CANCER FREE IN A FEW MONTHS! OF COURSE DOCTORS DONT EVER TELL YOU WHAT THEY EXPECT. IF THINGS WORK THE WAY THEY WANT THEM TO THEY TO MUST BE HOPING FOR THIS TO HAPPEN. ONE OF THE DOCTORS NURSES IN CALIFORNIA SAID THAT IF THIS DOESNT WORK THERE ARE MORE STUDIES COMING OUT FOR NEUROBLASTOMA IN A FEW MONTHS HE MAY BE ELIGABLE FOR. AGAIN THAT IS DOWN THE ROAD. I JUST HOPE AFTER STEM CELL TRANSPLANT IS OVER THE WHOLE FAMILY GETS TO FLY TO FLORIDA AND WE GET TO DO HIS MAKE A WISH IN DISNEY WORLD. FOR NOW SKY IS GETTING FED UP WITH THE RAIN. HE WANTS TO BE OUTSIDE ALL THE TIME. WE TOOK HIM TO NEBRASKA CITY THIS PAST WEEKEND AND HE GOT TO TAKE A CARRAGE RIDE WITH HIS FAVORITE HORSE THERE CHIP. HE ALSO NEVER WANTED TO GET OUT OF THE POOL. IM GLAD HE GOT TO HAVE A SOME FUN BEFORE THESE UP COMING WEEKS. THIS WEEKEND HE SPENDS WITH HIS GRAMMY , PAPA AND DAD AND AS HE SAYS HE IS THE BOSS THERE. SO IM SURE HE WILL BE PLAYING A LOT WITH HIS COUSIN HANNAH AND EATING HIS FAVORITE PUSH UPS. GRAMMY ALWAYS HAS THEM STOCKED AT THE HOUSE WHEN HE COMES OVER.
JUST AN UPDATE ON SKYLARS FRIEND JESSICA. SHE HAS STOPPED THE FIGHT OF NEUROBLASTOMA. HER FAMILY HAS HER AT HOME WITH COMPFORT MEASURES. SHE ASKES EVERYONE TO PRAY FOR JESSICAS PEACE WITH GOD. FOR ALL THE PRAYING YOU HAVE BEEN DOING FOR SKYLAR PLEASE ADD JESSICAS FAMILY INTO THEM.

Wednesday, April 20, 2005 3:46 PM CDT

SKYLAR DID VERY WELL DURING SURGERY. HE HAD TO SPEND THE NIGHT FOR JUST ONE NIGHT. HE HAS BEEN AGAIN FULL OF ENERGY. DR THOMPSON JUST CALLED ABOUT THE RESULTS. IT IS NEUROBLASTOMA HOWEVER THEY ARE NOT SURE WHY IT DOESNT TAKE UP MIBG. SOME WAY THE CANCER HAS LEARNED TO GROW DIFFERENTLY. SHE SAID IF IT WERE UP TO HER WE WOULD BE GOING TO CALIFORNIA THEN STRAIGHT BACK FOR STEM CELL TRANSPLANT. THEN THEY WOULD RESCUE HIM WITH THE STEM CELLS THEY HAVE ALREADY TAKEN OUT. HOWEVER SHE HAS TO WAIT TO TALK TO DR. MATTHEY IN CALIFORNIA TO DESIDE THE NEXT STEP. SO WE AGAIN ARE WAITING. IT WASNT THE BEST NEWS BUT WE STILL FEEL WE ARE GOING TO KICK THIS CANCER IN THE BUTT! YOU CAN ONLY THINK POSITIVE WHEN YOU HEAR NOT SO GOOD NEWS.
SKYLAR HAS BEEN ENJOYING THE WEATHER. GRAMMY BOUGHT HIM SOME SHOES THAT TURN INTO ROLLER SKATES SO HE IS HAVING A LOT OF FUN LEARNING HOW TO SKATE. WE HAD A PICNIC TODAY AT MEMORIAL PARK AND WATCHED THE DARK CLOUDS TAKE OVER THE SKY. I COULD HAVE SAT THERE ALL DAY WITH HIM BUT HE OF COURSE SAW SOME DOGS AND THAT ENDED THE PICNIC. KEEP UP YOUR PRAYERS WE WILL UPDATE AGAIN SOON.

Wednesday, April 13, 2005 7:10 PM CDT

THANK'S TO ALL THAT ATTENDED THE FUNDRAISER. IT WAS A BIG SUCCESS. I THINK SKYLAR ENJOYED IT MORE THAN ANYBODY. HE GOT A BIG HEAD WHEN HE REALIZED EVERYONE WAS THERE FOR HIM.
SKYLAR'S SURGERY IS SET FOR MONDAY AT NOON. THEY ARE TAKING A BIOPSY OF ONE OF THE TUMORS IN HIS LIVER. THEY WANT TO MAKE SURE THEY KNOW WHAT THEY ARE DEALING WITH. THIS IS THE ONLY NEW GROWTH THAT DOSENT TAKE UP MIBG. AS SOON AS THEY KNOW WHAT THEY ARE DEALING WITH WE WILL UPDATE THE WEB PAGE. THERE IS TALK THAT WE COULD BE GOING OUT TO CALIFORNIA AS SOON AS MAY 6TH FOR ANOTHER DOSE OF MIBG. AGAIN IT IS ALL STILL UP IN THE AIR.
ONE GOOD THING IS WE KEEP HEARING STEPS TO MAKE HIM CANCER FREE. THIS IS SOMETHING WE REALLY HAVENT HEARD FOR A LONG TIME. GOD KNEW WHAT HE WAS DOING SENDING US TO CALIFORNIA. ARE FAMILY KEEPS JOKING THAT WHEN WE GO BACK TO CALIFORNIA THE TUMORS WILL ALL BE GONE AND MAGICALLY HIS LEFT KIDNEY WOULD RETURN. THANKS AGAIN FOR EVERYONE WHO HAS BEEN HELPING OUT OUR BIG FAMILY. WE COULDN'T MAKE IT WITHOUT ALL OF YOUR HELP.

Friday, April 1, 2005 9:54 AM CST

HELLO AGAIN. SKYLARS MIBG SCAN IS IN AND AS THE CT SHOWED THERE IS TUMOR STARTING TO GROW IN HIS LIVER. THE GOOD NEWS IS THAT SOME OF THE TUMORS ARE GONE AND SOME ARE STARTING TO DIE OUT. WHAT IS LEFT IN HIS LUNGS IS MUCH SMALLER THEN WHEN HE WAS DIAGNOSED. WE ARE STILL WAITING TO FIND OUT WHAT ARE NEXT MOVE IS. IM GUESSING IT WONT BE UNTIL MONDAY. THE BEST THING IS SKYLAR IS FEELING GREAT AND HIS COUNTS ARE STARTING TO COME UP. MEANWHILE WE ARE TRYING TO POTTY TRAIN ARE DOG AND IT IS NOT GOING SO WELL. JACK IS A LITTLE BEAGLE, AND HE THINKS HE IS LARGER THEN ARE BLACK LAB. ITS PRETTY FUN WATCHING THEM PLAY.

FOR THOSE OF YOU THAT ARE INTERESTED IN ATTENDING SKYLARS FUNDRAISER IT IS FRIDAY APRIL 8TH 7PM-11PM. IT WILL BE AT THE MILLARD PLAZA BALLROOM 5339 SOUTH 139TH PLAZA. IF YOU HAVE QUESTIONS ABOUT THIS PLEASE CONTACT SUE FLYNN 402-697-9507. EVERYONE HAVE A GREAT WEEKEND AND ENJOY THE WEATHER. THANKS FOR THE CONTINUED PRAYERS.

Wednesday, March 23, 2005 5:48 PM CST

March 29...The preliminary results of the CT scan are really good. Sky's lung lesions are either smaller or are completely gone!!! Dr. Thompson did see a couple of new "spots" on his liver, but doesn't know yet what they are. We'll know more after his MIBG scan on Wednesday. Then all of the results go to California to see what the next step is. Thank you all for your continued prayers, they really do work...Cris

Just a short note until Kelly has time to update the journal, Skylar really keeps her busy. Skylar,Adam, and Kelly have added a new member to the family. A puppy named Jack. Hopefully they will post a picture of him soon. Sky is still doing well. He has his scans next week - CT on Monday, and MIBG on Wednesday...that old familiar nausea is setting in again, waiting for the results of the MIBG treatment is scary. We all think the scans will bring good news, but waiting is so hard. I know there are a lot of our friends waiting to hear too so as soon as we get the results either Kelly or I will update the website. Please continue to pray for Sky and please say special prayers for Haley, an eleven year old we met at clinic who has Wilms. We're all praying hard for her special miracle. And for Tanner who's family moved all the way here from California for treatment. Also check out the In the Arms of Friends Website. They are having a fund raiser at a new entertainment complex, inPlay, opening soon in Omaha. Sounds like a lot of fun and a good way to help a really good cause. Just click on the link below. Thanks again for all of your prayers. Cris

Monday, March 7, 2005 10:05 PM CST

WOW! WE HAVE RECEIVED MORE GOOD NEWS. LAST WEEK SKY HAD A BAD COUGH. THEY DECIDED TO GET A CHEST X-RAY TO MAKE SURE ALL WAS OK IN HIS LUNGS. WE FOUND OUT LATER THAT THERE WAS NOTHING WRONG AND THAT THERE WAS NOTICABLE CHANGE IN SIZE OF TUMORS. SO WE JUMPED FOR JOY AND HAD PIZZA AND CAKE THAT NIGHT. TODAY WE GOT TO SEE THE X-RAY AND LET ME TELL YOU IT WAS A GREAT FEELING. SOME OF THE SPOTS THAT USED TO BE THERE I COULDN'T SEE!!!! OF COURSE X-RAYS ARE NOT AS GOOD AS CT SCANS. CT SCANS SHOW A LOT MORE. STILL I KNOW WHAT I SAW AND THERE WAS A LOT LESS! WE STILL WONT DO ALL OF HIS SCANS UNTIL MARCH 28TH. THIS IS JUST THE BEGINNING. THE RADIATION IS STILL SUPPOSED TO BE WORKING FOR A FEW MORE WEEKS. SKY'S COUNTS ARE DROPPING AND HE NEEDED PLATELETS TODAY. YOU WOULDN'T KNOW IT THOUGH HE IS STILL FULL OF ENERGY. FOR ALL OF YOU PRAYING THANK YOU AND PLEASE KEEP IT UP BECAUSE GOD IS ANSWERING OUR PRAYERS.

Tuesday, February 22, 2005 5:19 PM CST

HELLO EVERYONE. WE ARE BACK FROM CALIFORNIA AND SKY IS DOING WOUNDERFUL. I THINK ALL OF US THAT WENT OUT THERE WERE WORRIED ABOUT THIS EXPERIMENTAL PROCEDURE. EVERYTHING WENT JUST GREAT. SKYLARS DOCTOR OUT IN CALIFORNIA COULDNT HAVE BEEN MORE PLEASED WHEN LOOKING AT HIS SCANS. SHE SAID THAT IT LOOKS LIKE SKYLARS TUMORS TOOK UP A GREAT AMOUNT OF RADIATION. THIS IS WHAT WE WANT BECAUSE THEN THE RADIATION WORKS OUTWARDS TO KILL OFF THE TUMOR. WE WONT KNOW RESULTS AT LEAST FOR TWO WEEKS. IS SEEMS LIKE A WEIGHT HAS BEEN LIFTED OFF MY CHEST AND I CAN BREATH BETTER. THIS SCAN GIVES US A LOT MORE HOPE THEN WE HAVE ALL BEEN HAVING. IF ALL OF YOU COULD SEE SKY HE IS BOUNCING AROUND. I CANT KEEP UP WITH ALL OF HIS ENERGY. I THINK HE TAKES A NAP JUST SO I CAN SIT DOWN. HIS COUNTS ARE NOT SUPPOSED TO DROP FOR ABOUT 4-6 WEEKS. DEPENDING ON HOW LONG THEY STAY DOWN HE MAY NEED TO GET STEM CELLS PUT BACK IN. THAT IS DOWN THE ROAD. RIGHT NOW WE CANT STOP ENJOYING THIS STAGE. THE LAST DAY WE WERE IN CALIFORNIA SKYLAR GOT TO PUT HIS FEET IN THE OCEAN AND EAT ON TOP OF MACYS AT THE CHEESECAKE FACTORY. HE CANT STOP TALKING ABOUT RUNNING FROM THE WATER ON HIS TOES. SO EVERYONE READING THIS I HOPE IT PUTS A SMILE ON YOUR FACE BECAUSE WE HAVE ALL HAD TIME TO PUT ONE ON OURS.

Tuesday, February 15, 2005 9:41 PM CST

Hello from "sunny" California. It's been raining here for the last two days straight. Skylar continues to do well. The foley was removed today so he can move around a little bit if he stays behind the lead wall. He was thrilled because he actually got to leave his room for an MIBG scan today. He probably will have to stay in the hospital until Thursday because he is still "hot". He took up so much of the radioactive material that he is taking a long time to get rid of it. I am amazed at how well Sky has done with the whole treatment. He is such a trooper. The staff here is wonderful. Everyone is friendly and so supportive. Fran & John, and Erin & Hannah left for Omaha today. Gus leaves on Thursday, I fly out on Friday, and Kelly, Adam, Sky and Sue leave on Saturday morning. Drew was supposed to go home with Gus on the train but got sick yesterday so flew home today to see a doctor. It will be a couple of weeks before we know exactly how much good this treatment did, but we are really hopeful. Thank you all for your thoughts and prayers, I can't tell you how much we appreciate them. Please keep them coming and don't forget to pray for all of the other kids fighting this horrible disease. Cris

Saturday, February 12, 2005 1:41 PM CST

Hi to all. We are here in California and Skylar is doing really well. This hospital is huge..700 beds and they are all full. (For those of you from CUMC - can you even imagine). Right now he and Hannah are singing together-apart on the two way radios. He tolerated the infusion without a hitch and is doing well in the room on his own. We are all gowning and gloving and checking our radiation levels when we come out of the room. Dr Matthay was positive about the outcome of this treatment before we started so we are really hopeful. She even talked a little about the future. All of the staff here have been wonderful. We are so spoiled at Childrens in Omaha that we were afraid we would be disappointed no mattter what. Kelly and Adam are staying at the family house about a mile from the hospital. I know there are so many of our family and friends who want to know how it's going with Sky we will try to update the web site later in the week. Please keep up the prayers for Skylar and all of the other kids who have cancer. Cris

Monday, February 7, 2005 8:05 PM CST

HI everyone, First..I have posted some new pictures so be sure to check them out. I hesitate to say HURRAY again, but the California trip is on. Sky's xray today showed no real change (or maybe even looked a little better). The only thing Dr Matthay (from CA) wanted him to have before he leaves is a transfusion and he had that today. So the Voorvart, Walsh, Berry, Faber journey to California begins tonight with papa and daddy taking the train. Skylar, Kelly, and Adam are flying on a Corporate Angels jet from Lincoln tomorrow evening. (What a great thing for companies to do. It's great not to have to worry about crowded planes or missed connections.) I will leave on Wednesday morning, Fran, John, and Sue are leaving on Thursday, and Erin and Hannah are flying out Friday. Sky will have some preliminary treatment on Thursday with the actual radiation on Friday. The good news is that his tumors are REALLY taking up the iodine. The bad news is they are taking up so much that when the radioactive isotope is added, he will be REALLY radioactive. The first day we may each only be able to be in the room 15 minutes.
Sky had a great time this weekend. We rented a room at the Holidome and he got to swim and play with Daddy, Aunt Erin, Uncle John, Hannah & Katie and even grammie and papa all day Sunday. He wanted to spend the night in the hotel, so when Kelly and Adam came to pick him up they decided to stay and he got to stay up late and swim some more. His spirits are good and he remains relatively pain free. He wasn't too happy with grammie this weekend because I made him take his medicine (even if it tasted really bad). Kelly has a real knack for getting him to take it, I think I'm too much of a push over so he plays me as much as he can get away with.
I will try to find a computer in California so I can let everyone know how the MIBG therapy is going. Thanks for your prayers for Skylar. Please pray this treatment shrinks those tumors so we can move on to a more permanent solution. And of course, say a prayer for all the other kids fighting so hard to beat this horrible disease. Cris

Friday, February 4, 2005 7:21 PM CST

Here we are a few days before we are supposed to go to California, with another twist. Skylar has pneumonia. There is a buildup of fluid in his lungs trapped between tumors. If the pneumonia doesn't get worse, Skylar will be able to have the MIBG treatment. If it does get worse, he won't. We will be back at clinic Monday morning for a definite answer. Please pray extra hard for Sky this weekend. And don't forget all of the other kids in similar circumstances. We will update on Monday, as soon as we know. Cris

Tuesday, February 1, 2005 12:46 AM CST

Hurray!! Finally some good news to report....we are still going to California. As long as Sky doesn't have fluid in his lungs and is not on oxygen he is still a candidate for the MIBG therapy. Our hope is that the treatment will shrink his tumors enough that he will be able to have a stem cell transplant. It's so lucky that Sky has so many people who love him so much. Almost the whole family is going. Of course, Kelly, Adam, & Drew are going. Adam's parents, Fran and John, Papa, Aunt Erin (with Hannah), & I and Kelly's mom Sue are also going. We are all traveling separately but will meet up at the hospital. Kelly has been in contact with Corporate Angels with the hope they will at least have a flight back for Sky, he would be so much more comfortable and Kelly & Adam wouldn't need to worry about the layovers etc. We don't know how well he will feel. I may have mentioned before that the treatment involves injecting radio-active iodine (by IV) with the hope that the tumors will take up the isotope and shrink. He will literally become radio-active so we each can only be with him for about 25 minutes the first day. The time will increase every day after that until he's discharged. The treatment starts on Friday and he should be discharged on Tuesday. He is having some stomach and lung pain now (he says his "heart hurts" - out of the mouths of babes - all of our hearts hurt. Dr Thompson has prescribed pain med but he doesn't really like how it tastes. He will have the last test before we go tomorrow - and MIBG scan. The ever wonderful Anisa has volunteered to access his port today for the initial injection so Kelly will take Sky to the clinic before they go to Clarkson. Everyone in the clinic, but especially Anisa, have been so kind to Sky and our families, they really do make this so much easier. Thank you for your continued prayers for Skylar and all of the other kids out there fighting cancer. Cris

Thursday, January 27, 2005 5:29 PM CST

I thought I would update Sky's journal since there are so many people who want to know how his treatment is going. First of all you will notice the beautiful addition to this page. Thanks so much to Liz Larson for the great picture of Skylar - which came to me already sized for the web page. I can't say enough about Liz and Kellie Beresh and In The Arms of Friends. They follow so many kids with cancer and have such enormous hearts. When you have a few minutes, please click on the link below to see what good work they do. Sky's CT scan on Monday was not very encouraging, the tumors he has in his lungs and abdomin have increased in size. Dr Thompson sent a copy of the scan to California on Tuesday so now we're waiting to find out if he still qualifies for the MIBG treatment. As of noon today, we still hadn't heard. He has been having some abdominal pain, apparently caused by tumors in his tummy pushing on nerve, but it is pretty well controlled with pain meds. The good news is that Sky remains in good spirits and is as playful as ever. He is enjoying his big family with lots of places to go for extra attention and his daddy just got two new puppies - Rex and Gypsy. As soon as I get pictures developed of Sky with them, I will post them. He's also had a lot of fun in the snow this week. Last week Kelly and Adam brought him up to Cheeseburger in Paradise to sing at open mike night with his dad. He and Drew were quite the pair. Sky was a natural, not at all shy..he just grabbed the microphone and started to sing and dance.
Either Kelly or I will update the journal as soon as we know about California. Thanks again for all of your prayers, please continue to pray for Skylar and all of the kids with this horrible disease. Cris

Monday, January 17, 2005 8:30 PM CST

Hope everyone is having a good new year. Skylar has had a new chemo this month that let us be out patient. The chemo was called CPT11 and it was every day for 2 weeks. He as always handled it very well. We are not sure if it has made any change to the tumors but we of course are praying. Skylar will have many tests done these next two weeks to get ready for the single dose MIBG in California. MIBG is a radioactive substance that will be given to him February 11th. He should be in the hospital for about a week then be able to travel home. Since Skylar is so loved he has about a dozen family members flying out to be with him. Thank God for family. We don't know the next step after this but we have are minds on a few options. As soon as we hear of more we will keep you updated. As always thanks for checking in and praying!

Saturday, January 1, 2005 9:56 AM CST

Hi everyone. We are back from California without much news. Dr Matthay will accept Sky for BSO and probably MIBG therapy but the cost of these treatments are enormous so there are lots of financial details to work out. If those can be resolved, he will go back for treatment either the 17th or the 24th. Before that he has to have another MIBG scan, and another bone marrow aspiration. The trip was a great success from Skylar's stanpoint. We went on a boat ride in the harbor and saw sea lions, ate at the Rain Forest Cafe, and his counts were high enough that he could swim at the hotel. He thought the airplane ride was great, especially the take off because the plane went so fast. All of that and he got to share it with the three people he loves best, Kelly, Adam, and Drew. We missed our connection in Phoenix, but it turns out that was Sky's favorite part. Adam has family that lives in Phoenix so he, Kelly, and Sky stayed overnight. Adam's uncle has a son Sky's age who is now Sky's "new best friend". We all had a good Christmas. Santa brought Sky both of the things he wanted, a Sled and a Krabbie Pattie Grill (along with a lot of other gifts). He spent Christmas eve with Kelly's family and Christmas day with us. I'm sure he had more attention than he wanted. On Christmas day papa and I took Skylar, Hannah and Kaitlin swimming at the Holiday Inn. It seems like we had a little reprieve, but now everything is back to normal. Sky was going to have chemo last week, but his counts were too low. He goes back to clinic again this Monday, but whether he has chemo depends on when he will go to California for BSO treatment. Kelly has been really busy between Christmas and processing all of this treatment information. I will update on the California treatment as soon as we know. Thank you all again for your continuing prayers not just for Sky, but for all of the kids fighting this horrible disease. Cris

Friday, December 10, 2004 7:15 AM CST

Hi to all of our friends and family. We are finally moving forward. Sky has an appointment at UCSF with Dr. Matthay on the 20th for a consultation. If all goes well he will be finishing this week of chemo today. He's had a busy week at the hospital. There have been Christmas carols on the floor and he got to "sneak" to the lobby to hear a chior from Faith Westwood Church. They sang Rudolph at special request for Sky. Last night he went to the Candlelighters Christmas party and today Santa is going to visit the rooms. He was also on the channel 3 news - just a couple of minutes - but of course to us he's a super star. It's getting hard to keep up with his social life. His new friend Cole got to go home earlier in the week so Sky's a little "bored". Please keep up all of your prayers for Sky and all of the other kids that are fighting so hard to get well. Happy holidays. Cris

Saturday, December 4, 2004 4:09 PM CST

Just a short note to let everyone know Sky's scans were pretty much what was expected. The MIBG was almost the same as the first one. Several large tumors in his lungs and still some cancer cells in his abdomen. It looks like we will be going to San Francisco for a consult during the week of the 20th so because of the delay Sky will be having another 5 day round of chemo starting Monday at Childrens. Apparently it will be March before there is an opening for MIBG therapy so we're looking at an alternative. He does have enough stem cells for two recoveries so if this alternative doesn't work he could still have MIBG therapy. We will know more at the beginning of next week. In the meantime he has recovered well from his surgery. He stayed with us last night and today and played just like he did before he was diagnosed. What a bitter sweet feeling. I'm so glad he is feeling well and so sad at all he's missed. Once again I am amazed at his resiliance. The kids we've met are amazing. My goal is to live my life with such grace and courage. Kelly's sister Jenny is planning on going home this week. That on top of chemo and the uncertainty of Sky's treatment is hard. Luckily she has Adam and a lot of support from family & friends. She has always been such a good mom. Drew is all moved in to his new house. This whole big extended family loves Sky so much. I think we all savor the "normal" days. I don't think there is any denying how powerful prayer is. Please remember Sky (and all of the others fighting various forms of this horrible disease) in your prayers. Cris

Tuesday, November 30, 2004 12:11 AM CST

Hello again to all of our family and friends. I hope you had a good thanksgiving. It's hard to believe the holiday season is here again. We are still waiting to hear what treatment will be next for Skylar. It seems like lately we are always holding our breath - just waiting for news. Thank goodness Sky is returning to his old mischievious self. I always say he has stars in his eyes. He even changed the birthday candles on his Aunt Erin's cake from 34 to 43 and then teased her about how old she was!! He had a great weekend. Kelly, Adam, Sky, and Adams family went to a tree farm on Saturday to pick out a christmas tree. He stayed with us on Saturday night. Sunday morning we drove out to Drew's new house so he could see where his daddy lives now and pick out a tree for a tree house and in the afternoon we had the Skylar required chocolate birthday cake for Erin. He really enjoyed the snow he even got in a few sled runs in the afternoon before we took him home. We have met so many kids with this horrible disease. They realy teach us how to live life. Please find it in your hearts to pray for all children with cancer along with your prayers for Sky. As always we all thank you for your support. Cris

Tuesday, November 23, 2004 7:25 PM CST

I've been waiting to update Sky's journal until we had something concrete to let everyone know.He's just now starting to be "Sky" again. Sunday he even wanted to play tricks on everyone-at least for a little while. When our neighbors, Darby, Chris, & Crew brought over their new puppy Sky was all smiles. I'm not sure if the smiles were for the puppy or for Darby, I think he has a crush on her, he breaks out in a big smile everytime he sees her. We are still uncertain about which treatment will come next, it will be one of several experimental treatments and we will have to leave Omaha. All of the physicians seem to think MIBG Therapy is the way to go but the study is on hold now. I think the protocol is changing because of success in previous treatments. Sky will have an MIBG scan on Tuesday. We should know after that what's next. Kelly's been busy just taking care of a post-op boy. She's really fortunate to have her sister Jenny staying with her and Adam. She not only helps a lot but is such an emotional support for them. Drew is doing well also. All of us just want to do something. Waiting is so hard. Happy Thanksgiving. Continued thanks for your thoughts & prayers. Cris

Tuesday, November 9, 2004 7:10 PM CST

Just a short note to let all of our friends know Sky's surgery is over. It was a huge success. He had a tough weekend. He has been in constant pain since last Thursday. He's such a trooper he made it to his birthday party and got a chance to play with a surprise guest - Spiderman. He was in the ED on Saturday night but rallied enough to come home to our house. He continued to have pain on Sunday and was admitted on Sunday night. The pain was caused by bleeding into his tumor. As of 1:30 this morning the surgery was still up in the air. Thank you all for your prayers, by 7:00 his counts were high enough for surgery and by 12:00 he was in the operating room. The main tumor came out in one big piece and the surgeon was also able to remove two of the lung lesions. They did have to remove Sky's left kidney, but did not have to take his spleen. Right now he is in ICU and looks great, he has better color than he's had in days and for the first time in six months his tummy is flat!!!!!! It will take a few weeks for him to recover and then we'll be on to the next phase in treatment. Until the pathology comes back we won't know what that will be. I think our big blended family was a little overwhelming for the doctors that don't know us, but Sky is so fortunate to have so many people that love him so much. Like always, Kelly, Adam, and Drew are with him. I know Kelly will update the journal as soon as she has time. The three families have so many friends all around the country who are praying for sky and following the web site, I wanted to make sure everyone knew it was a good day. Thanks again for your prayers (and please keep on praying). Cris

Wednesday, November 3, 2004 12:45 AM CST

Tuesday, November 2nd we had an appointment with the surgen, Dr.Raynor. We are very pleased to have him for this procedure. Surgery is scheduled for November 9th at 10am. The surgery is set for 4-6 hours. The tumor is placed were he thinks he will most likely have to take out the kidney, but he is going to try his best to save it. We were told the recovery time is about 5-7 days, with spending the night in ICU for the first night. He assured us that he will feel little pain after the procedure, of course with medication. He also told us in about a day and a half he will be getting out of bed to play.
For his birthday we are planning a swimming party with all of the family and a surprise visit from spiderman! Thanks for checking in and praying.

Monday, October 18, 2004 9:45 AM CDT

Hello again. Skylar's surgery has been scheduled for November 9th at 10am. They will do another ct right before and the only reason they wont do surgery is if his last chemo had a dramatic effect on the tumor. Then they will do another chemo to shrink it more. However they already planned for the 9th. Sky is getting a blood count today. We are expecting his counts to have dropped by now. Good thoughts for the day, Sky will hopefully be able to trick or treat and celebrate his birthday out of the hospital. Just a reminder to all Skylar came into the world on November 4th of 2000. Hope everyone has a Safe and fun Halloween. Once again thanks for all of the prayers.

Tuesday, October 12, 2004 9:56 AM CDT

Sky's home from the hospital, he goes to the clinic on Thursday. Hopefully another scan and surgery will be scheduled then. The last we heard his surgery will be in about three weeks. Like always he made it through chemo with few side effects, but was more than ready to be free from his "buddy" and go home. Your notes are encouraging and it's fun for Sky to hear from friends from all around the country. I plan to print them and put them in a book for him to read some day. Thank you all for your continuing prayers. Cris

Friday, October 1, 2004 8:26 AM CDT

I just want to thank all of our good friends and family for your messages to Sky, and let everyone know he was admitted to the hospital yesterday. Kelly will update the journal again as soon as she has a chance. For the last few days Sky's been complaining of abdominal pain and Wednesday night Kelly & Adam took him in to the ER because he had a huge bruise on his side. At first the doctors thought he was bleeding from the main tumor, but it turns out his blood wasn't clotting and it was just a big bruise. The CT scan showed that the tumor is still active (the lung lesions are about the same). This means the chemo he's had isn't working. When we left the ER it looked like he would have surgery as soon as he was able. After a roller coaster ride of a day the oncologist decided to try another round of different drugs and then do surgery when he's strong enough..probably at the end of the month. He will stay in the hospital at least until after this round of chemo. Drew, Kelly & Adam are with him and he is usually in good spirits ..he defines the word hero. Thank you for your continuing prayers. Cris

Monday, September 20, 2004 10:49 AM CDT

SKYLAR HAD A FIVE DAY CHEMO LAST WEEK. HE DID BETTER ON THIS CHEMO THEN ANY OF THE PAST ONES. THIS LITTLE MAN HAS SO MUCH LIFE IN HIM. THE PAST TWO CHEMOS WE HAVE BEEN ABLE TO STAY OUT OF THE HOSPITAL WITH OUT FEVERS. SO KEEP UP THE PRAYERS THEY ARE ALL WORKING. WE HAVE BEEN KEEPING SKYLAR INDOORS AND AT HOME EXPECTING HIS COUNTS TO DROP SOON BUT WE HAVE BUILT UP ON THE GAMES AND TOYS. SO WE NEVER GET BORED. THANKS FOR VISITING THE WEB SITE!

Tuesday, September 14, 2004 7:43 AM CDT

Sky was admitted to Children's Hospital yesterday for his fifth round of chemo. He'll be in the hospital for around 5 days. Be sure to scroll down the photo page to to see Skylar and Scooby.

Monday, September 6, 2004 8:32 AM CDT

Sky has just finished his fourth round of chemotherapy. He loves ninja turtles,anything Scooby Doo, and most of all he loves to ride his motorcycle. Our local cable company recently made it possible for Sky to meet Scooby in person. We will post pictures as soon as possible.

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