God's timing can be so strange. I have been a Believer and Follower of Jesus for 40 years, and I admit not all of those years did I walk with Jesus.I have asked many, many questions of Him, one being "Why Lord am I just NOW seeing things in the way they are meant to be seen". To be honest I feel like a retard. Not really, but one wonders.
There are scriptures I have never really understood (as we all have I'm sure) But the scriptures RE: children are the ones I never really quite understood, Like
"We must become like little children to enter the kingdom of heaven" and many others. It was while reading a book "The Irresistible Revolution" by Shane Claiborne, that God started a process in my life I never would have imagined. After 40 years was I finally starting to understand what God was truly saying? now you know why I feel like a retard.
For over a year I have been asking God to break my heart, (Be careful what you pray 4) I normally don't pray for myself because I'm so over blessed as it is, a wonderful wife of 35 years, a great son and probably too many guitars and amplifiers. I have played in Christian bands and toured the country, played at a zillion churches, (well maybe not a zillion but you get my point) I have been a worship leader, lead music worship at home groups, but I was feeling empty it just wasn't enough, something was missing. My friend and brother, and fellow guitar player Steve Horvath told me about a little girl, her name is Laiken Kenwood. He sent me her website and I fell apart, I wept and wept. Laiken had Leukemia. She is 12 years old. I read her story and was so broken hearted. I have always loved kids but she ended up being a God send. Steve and I went to visit Laiken at Children's Hospital in Los Angeles, I sort of knew what to expect, but not really. When I looked into Laiken's eyes, I saw Jesus, I didn't see a sick little girl. When our visit was over, I looked at her and smiled and waved goodbye, she looked almost right through me and smiled and waved, and the Love from that little smile and wave, went right through me. She was the bravest person I had ever met. It was very hard to sort out my emotions that night as I tried to sleep, turns out I didn't sleep at all. All I thought about was Laiken and Jesus. God was indeed starting to answer my prayer, His process of breaking me had begun and I knew this deep in my spirit, and He was using a 12 year old girl with leukemia to do it. Although not knowing how to react to what God was doing within my heart. I thought of just giving some time and visit the kids at Children's Hospital and sing songs and make them smile and laugh even if it's just once a week. Turns out Steve was thinking the same thing. We looked into it and met with the Arts Program Coordinator at the hospital, she was pretty stoked that two hippie musician guys wanted to give some of they're time to the kids. God opened doors so fast, and continues to do so, I can''t run through them fast enough. We have visited Laiken on many occasions and continue to pray for her, she was having a rough time. Laiken's fight and struggle is very personal to me. We came across another little girl about 2 weeks later her name is Valerie Dalmau, she also has cancer, be it not as bad as Laiken but none the less, she has this awful disease. Why isn't there a cure for this????? Valerie is another bright light, she too is the mirror of Jesus. I think the more I get into this I am gonna realize that all the children mirror Jesus. I do keep getting people who say to me "Oh what a wonderful thing you are doing" I'm not into that, it's not about me, it's about following Jesus and really doing what he did, and it's about the children.
Through this experience I have started a ministry called "Rockers 4 Kids" It is a chance to minister through music to kids with cancer and to bring the love of Jesus to them and they're parents, and mainly just be there for them in they're time of need. Having fundraisers for parents who can't afford much if anything. Any of these children could be mine, or yours but as God whispered to me "They are our children" Pray for the kids. Thanks for reading this testimony of how God used 2 little girls in my life. And remember Jesus Loves You! Matthew 18:3-5 I tell you the truth, unless you become like a little children, you will never enter the kingdom of heaven. Therefore, whoever humbles themselves like this child is the greatest in the kingdom of heaven.
I believe when Jesus said kingdom of heaven he meant the kingdom of heaven right here right now, not some far away galaxy.
The 1st.. Song is "Love 4 Laiken" (c) 2008 Guitarbro Music B.M.I.
Written and Produced by Major Cornell Recorded at "Talking Dog Studios"
I wrote it for the little girl who God used to change my life, Laiken Kenwood.
Thank You, Sweetie.
Many thanks to all who helped in the recording of "Love 4 Laiken"
Greg Kramer, Thanks for your talent and heart
Jim McGrew, Thanks for your talent and heart
Tom Berringer, Thanks for your talent and heart
Thanks Greg for the use of your studio, and many more thanks for putting up with me during this emotional time.
VALERIE'S SONG HAS BEEN TEMPORARILY BEEN REMOVED UNTIL I CAN REMIX IT..
ALL RIGHTS RESERVED. ANY USE OF THESE SONGS WITHOUT PERMISSION IS PROHIBITED BY FEDERAL LAW.
MANY THANKS TO ALL THE PARENTS FOR ALLOWING ME TO POST PICTURES AND THE STORIES OF THERE CHILDREN ON THIS SITE, AS WELL AS THE UPDATES I PERSONALLY WRITE OF THE ONES I KNOW AND LOVE DEARLY............
MAY GOD BLESS ALL OF YOU.
"ROCKER KIDS" UPDATE
Sunday March 30th.2008
Laiken seems to be doing a lot better for now, Stacey (her Mom) said "they have been through this part of the process before and the worse is yet to come" I wrote her and said "I think the best is yet to come" Keep praying for Laiken, she has a long way to go.
Valerie is doing about the same, still undergoing treatment, pray for her and her Mom.
Sat. April 5th.2008
It seems Laiken has taken a bad turn, she is having a hard time breathing, and they moved her to ICU. The doctors put her on more meds, and she is on a breathing machine.
Continue to pray for Laiken and her Mom and Dad.
Wed. April 9th.2008
Laiken is still in ICU with a slight lung infection. The great news is her body is producing it's own white blood cells (Thank You Jesus) She will be out of ICU soon and back up in her room. Her vital signs were pretty good. Didn't get to talk to her she was sleeping. Continue to pray for Laiken.
Wed. April 9th.2008
Valerie is doing better she will undergo a new Chemo drug in a couple of days.
She is so cool, and so very, very smart. She is able to get up and walk, she has a brace on her hip, because the tumor dislocated her hip. She asked me about God and did he give her this cancer, I said no sweetie the devil gave it to you, she said why? I said because the devil hates children. She said I didn't think God would do this to me. She was more concerned about Laiken's condition. Out of the mouth of babes. I just want to wrap her up and take her home, she is so awesome. Again we asked if we could pray for her and she said please do. She is another example of how in touch these kids are with God. If only we adults could have this childlike faith.
Continue to Pray for Valerie.
Fri. April 11th.2008
Laiken is still in ICU, her white count is rising, however she has other complications, that I won't go in to. I hate seeing her in ICU. Please keep praying for Laiken. Stacey (her Mom) is spent, she is just exhausted. Pray for Stacey also, she needs the strength of God right now in a big way. Continue to pray for Laiken and Stacey and Jim her Dad. They are amazing people.
Fri. April 11th.2008
Valerie started a new chemo treatment, and is doing very well, she told me she hasn't gotten sick and is hungry all the time. This is a good sign. She is learning how to knit and is learning it quickly. She is very creative. God uses her to minister to both Steve and I, cause we see Laiken first, and Laiken is in pretty bad shape, frankly it is very depressing, and Valerie lifts our spirits up in a big way, God is using a 12 year old in ways she doesn't even know, how awesome is that.
I only hope and pray she won't get as sick as Laiken is. Valerie is so polite,she loves God so much, and she just illuminates Jesus. We have come to love this little girl. So for now she is doing very well, thank Jesus for that. Continue to pray for Valerie and her Mom. I don't see how parents can do this to be honest.
Sunday April 13th.2008
Laiken is not in good shape, and I am so bummed out. Still believing God, but if I am taking it this hard I just can't fathom what Stacey (Mom) and Jim (Dad) are going through. I believe in prayer and I am not above begging God to act on there behalf. Please Pray in earnest for Stacey, Jim and of course Laiken. All in all I have to keep praising God in all situations. His ways are not our ways.
Sunday April 13th.2008
From what I have learned Valerie gets to go home soon, and will return periodically for chemo treatments.
Wed. April 16th.2008
Laiken is still in ICU, Her vital signs looked pretty good. She has been up a little bit, but sleeps a lot. Nothing really that new to report.
Please continue to pray for Laiken, Stacey,(Mom) and Jim (Dad) This is really taking it's toll on them.
Wed. April 16th.2008
Valerie, boy oh boy she is one of a kind. Good news and a victory so to speak. She will be released from the hospital on Monday April 21st. I have mixed feeling about it, but I am being selfish, don't know if I will see this special child of God again or not. I have grown very fond of her. I do hope to keep in contact with Valerie's Mom on her progress via email. She will have to return for chemo treatments every month or so. Over all Valerie is doing great, so thank you Jesus for that. Continue to pray for Valerie,her Mom and Dad, and two little sisters.
Fri. April 18th.2008
Laiken is in extremely critical condition. She has stopped breathing on her own and a machine is breathing for her. Nothing else to report.
Fri. April 18th.2008
Valerie is doing really well, though the tumors are still there it looks like they are under control. She has to return every 21 days for chemo treatments, but so far it doesn't really effect her. I was blessed when her Mom said Steve and I can come play music at her home coming party in a couple of weeks. I just want to follow her progress, OK and yes to visit with her. She and I have become buddies.
Sat. April 19th.2008
Received a phone call at 7:am and was summoned to the hospital, Laiken had gotten worse overnight. We were gathering to say our goodbyes. I was so very sad. I thought to my self "This isn't happening" Steve, his wife Jacey, (who was one of Laiken's teachers) and I went in to see Laiken. Her body was just so invaded by cancer and all the drugs, we were all so heartbroken. We spent a short time with her. I didn't even know what or how to pray, I just stood there looking at this sweet little girl with tears running down my face and just spoke the name "JESUS" over and over. We returned home waiting for that call we all didn't want to get. Well that call never came. Now it is Sunday and still no phone call. The Last report is that Laiken is still hanging tough. God is still not ready to take her home. As long as there is life, there is hope. I do not know what God's plan is with Laiken. If by some huge miracle she pulls through this mess, one day she is coming to church with me, so I can show people a real miracle.
IT IS WITH SO MUCH SADNESS AND SORROW THAT I HAVE TO ANNOUNCE TO ALL OF YOU THAT LAIKEN PASSED AWAY TODAY APRIL 22ND AT 4:36 PM. SHE HAD TOUCHED THAT FINAL PERSON AND GOD SAID "LETS GO HOME SWEETIE". I AM SO SAD, BUT YET HAPPY, SAD, FOR STACEY (LAIKEN'S MOTHER) HAPPY BECAUSE LAIKEN IS WITH JESUS. ALOT OF EMOTIONS GOING ON. STACEY IS A STRONG WOMAN OF FAITH IN JESUS CHRIST, BUT THIS IS SO VERY HARD FOR HER AND GOD UNDERSTANDS, AND HE WILL COMFORT HER WITH GRACE, MERCY AND LOVE. I HAVE LEARNED TO SEE THAT LAIKEN'S ILLNESS WAS THE MAIN PART OF HER MINISTRY. GOD USED A VERY BAD SITUATION WITHIN A SWEETHEART OF A CHILD AND GOT THE VICTORY OUT OF THIS WHOLE MESS. SHE NOW WALKS THOSE STREETS OF GOLD. I THINK ABOUT HER MOM STACEY WHO HAS LOST HER ONLY CHILD. OUR MINISTRY WILL GO FORWARD WITH NEW MEANING, REALLY IT IS LAIKEN'S MINISTRY, WITHOUT HER IT WOULDN'T BE.
THANK YOU LAIKEN, I GREW VERY FOND OF YOU AND WE WILL HAVE THAT TALK WE COULD'NT HAVE HERE ON EARTH ONE DAY. I WILL MISS YOU SO VERY MUCH, YOU WILL ALWAYS HOLD A SPECIAL PLACE IN MY HEART FOREVER, AND YOU WILL ALWAYS BE THE #1 ROCKER KID, SO UNTIL THEN HAVE FUN IN HEAVEN SWEETIE.
JUST AS JESUS LIVES, LAIKEN LIVES ALSO.
Wed. April 23rd.2008
I learned today that Valerie is still in the hospital, she had some minor stomach problems.
Tues. April 29th.2008
Valerie is home, Praise God. I spoke with her yesterday by phone and she is just so sweet. Steve talked with her last week and this is what she told him, "You and Major are my best friends" this coming from a 12 yr old. that touched my heart so much. Valerie never had any visitors at the hospital. She said to me " You wrote Laiken a song? and I said yes sweetie I did, she then said that was so nice of you" She thanked me for everything we have done for her. All Steve and I have done is show her the Love of God, nothing more nothing less. Valerie came into our lives at the right time, we are so very fond of her. I was having a rough day yesterday and just as always when I spoke with Valerie God used her to lift me up. We will be visiting her at some point and we will continue to be advocates for her and all the kids. Pray for Valerie and her family, she is not out of the woods, but as with Laiken God is useing her in big ways. Yes I will probably write her a song too.
Wed. April 30th.2008
Stacey, and Jim buried there daughter today. The service was inspiring, sad, and uplifting. God poured out His Grace, Mercy, Love, and Peace upon everyone.
Laiken Katherine Pleasant Kenwood touched so many of us.
Just as Jesus Lives, Laiken also Lives. I looked up the Name Laiken to find the meaning of the name and somehow I wasn't surprised. It means "Unique" That she was.
Thank you Sweetie.
Mon. May 5th.2008
Valerie will be going back in the hospital tomorrow for more treatment. She will be there for about 3 or 4 days. Her Mother was kind enough to tell me of Valerie's condition, and I hope, and pray she can progress with God's help. Steve and I will be visiting her this week and I will have an update as soon as possible. Pray for Valerie and her family, this is so very hard on all of them.
Fri. May 9th.2008
Valerie did not end up back in the hospital, her platelets were low. She is at home. I spoke with her today, and she sounds happy, and is very upbeat, and is eating a lot. She was very talkative, which is nothing new. She is one cool kid. These a great signs (Thanks Lord) She is so funny, I called her and there was no answer so I left a message and she called back and said "My phone was in my shoe" Good place for the phone kiddo. She said she is bored, she has missed 4 months of school, but something tells me she will catch up very fast. Her Mom had given me Valerie's cell number and there home number, for which I am so very thankful. Steve and I are very fond of Valerie. Continue to pray for Valerie and her parents and two little sisters.
Thurs. May 15th.2008
I spoke with Valerie today, she sounded very tired. She has not been able to get her treatment because her platelets are low. She did get platelets a couple of days ago, so that is good. They are going to try her treatment again tomorrow (Fri)
She was in a very positive state of mind, she said she is eating a lot and is resting.
My heart breaks every time I speak with her, Why? well I've said it over and over she is such a neat little girl, and I recognize God is using her within me to bless me. Blessings are wonderful, but really I just want her to be healed so very much. I tried to reinforce within her that God has a plan for her, and to be brave and tough,she said ok only in a way that Valerie could say it, not questioning what I said just having that child like faith. While I am telling her this my eyes are tearing up. Her Mother sounds spent, she said she was worried and I just told her that there are a lot of people praying for there whole family. I could go on and on, but mainly Valerie is ok and God is faithful, and true. Pray for the whole family, they need it badly.
Sat. May 24th.2008
Went to visit Valerie today at her home. So me and my wife Faye are sitting on the couch and she comes walking in with very little help from her Mom, I almost started crying, this is so cool, this was one of her concerns not being able to walk because of the tumor on her hip, she was smiling so big, it was so awesome. I am so very, very happy for her. Thank you Jesus.
She looks so good. She is happy and healthy. Her chemo treatments went well. She played violin for us which was great, she is also wanting to learn how to play guitar and her parents are so gracious as to allow me to give her lessons. She is going to be a "Rocker" Valerie is a very focused young girl and I am proud of her and in awe of her also, She is a fighter and is not going to lose this battle. She blesses me so much. So my whole day was like sunshine. Continue to pray for Valerie and her Mom, Dad and Sisters.
Wed. May 28th.2008
Valerie had her first guitar lesson, though she wasn't feeling very well, she managed to learn some exercises and some chords. I am so honored to be able to share music with her, she has talent I can see it. I am so blessed by her and her family, they are the most Godly family I know. She said she was going to write another letter to God, (I can't wait to read this one) She wrote God a letter right before she was diagnosed, and it was the most beautiful letter I have ever read. ( I will ask and see if I can get permission to post it here) If Valerie could stand in front of any church congregation and read this letter, I believe people would really understand about that child like faith our Lord Jesus Christ was speaking of. It would bring people to there knees.
THANK YOU VALERIE, I LOVE YOU SWEETIE, YOU INSPIRE ME.
Continue to pray for Valerie and her Mom, Dad, and two wonderful Sisters.
Valerie's Caringbridge site is up and running, I know this will help her tons. She has already received a lot of messages from friends through out the country, and it will help her knowing that so many are praying for he complete healing. Her site is listed in the Rocker Kids website section. I see the same thing in Valerie as I did with Laiken, When I look into Valerie's eyes I see Jesus. They are so much alike, both love God, both basically very happy kids.
I am learning so much from Valerie, God is using her in my life in a big way. Once I get some more pictures I will post them. Reading Valerie's story and knowing what she has gone through breaks my heart, no child should go through this. God has big, big plans for her, and that is an awesome thing. I am writing a song for Valerie, it is a slow process, and I hope to get it done and recorded as soon as possible. The title is "Valerie" what else would you expect.
Valerie is doing pretty good, she had a new scan yesterday Monday June 16th, and is getting her 5th round of chemo. Will update more later.
I have wonderful news, Valerie is doing exceptionally well, they took her brace off, and she is very happy about that. There is also other news but I have to confirm it before I tell everyone. It is hard to understand Valerie's Mom over the phone because of her accent, they are from the beautiful Island of Puerto Rico. I will see Valerie on Wed June 25th, and will update the news then.
I spoke with Valerie today, she sounds really good (Praise God) She is having a wonderful summer, she went to a camp that Children's Hospital put on, and she has had a lot of friends and family over. Her Mom says she is doing really good.
Thank You Jesus
While at CHLA today we both saw Valerie, her Mom, her cousin, Paola and her sister, Amanda. Valerie was getting her chemo treatment. She looked tired and worn out, but she is still the sweet cute girl we all love and pray for. She has had a busy summer, and has been doing a lot of fun activities. Not much more to report.
She continues to hang tough and she is so brave. She is eating well, and told me she doesn't get sick from the chemo, Praise God for that. I just encouraged her by saying
"Valerie, you are going to beat this" She responded by saying in typical Valerie form "I know I am" Continue to pray for Valerie and her family.
As Steve and I arrived at the hospital today, we decided to take another elevator, we were getting all turned around taking the other one. This one we knew well, so we get on and when the door opens at the floor we are to get off on there stands Valerie's Mom Lourdes, Amanda, and Valerie. It was a nice gift from God. She was there because she had forgotten something from the week before. We chatted for about 20 minutes. Valerie is doing pretty good, either that or she is a great actress. Another cool thing God did for all of us. Thanks Lord.
Valerie is having a wonderful summer as a child should be having. Though she is a sick little girl she is keeping busy and having tons of fun.
Valerie had her chemo treatment so I decided I would go to the hospital and visit and see if I could help out in any way. I had a nice visit, however Valerie is having a rough time with how she looks right now, but to me she is and always will be the sweet girl I met back in April. She will get through it. God is good to her, she is getting better but still has a long way to go, and with God's help she will get better.
I met Matthew Rager for the first time at our concert for awareness. I saw him and He came running up to me and gave me the biggest hug, boy that made my whole evening. What a loving child he is, but aren't they all really.
Thanks Matthew. He is doing pretty good, he still has some treatments but you would never know he had a brain tumor.
I learned today that Valerie needs to have lung surgery. Time to pray. I dropped by her house to see her, she is one amazing 12 yr old. She is ready for the surgery. She told me this, "I know I am gonna beat cancer, because God is gonna use it as a testimony" Valerie you are my hero.
Today was Valerie's surgery. Steve and I went down to support her Mom and Dad, and stayed until she was out and I knew that she was ok. We were all very nervous, but all knew that God was in control.
Went to see Valerie today at the Hospital. She looks so good and is in the greatest spirits ever. I am in total awe of these kids. She was very talkative and I think she was glad to see me. Her surgery went flawless, Praise God. It was non evasive so no big incision. The doctor was able to remove the whole tumor, it was the size of a golf ball. Now they send it off to pathology to see what course of action is next.
Something hit me today while talking with her, I could she is gonna beat this because God is going to use her in a big way. She is so sweet and is a very Godly girl and she is very smart and very, very funny. I love this kid.
Saw Valerie today, she is doing awesome. She has minimal pain and will be going home this week. She remains very positive. I know I have said this a zillion times, but I love this little girl, she is one incredible 12 year old girl. I can tease her and then she gives me that certain look like she is mad, and then she bursts out laughing. She has the greatest sense of humor. Just keep praying for her, she is not out of the woods yet.
Valerie has had a setback, she had a bad drug reaction and it has caused a very, very bad bladder infection, and some other issues. She is highly sedated, and as of today Nov. 6th, she is still under sedation. It just breaks my heart into tiny pieces to see her this way. She was doing really good and was so happy and just being Valerie. Pray for the whole family as this is so hard on all of them. All the prayer warriors who have taken up Valerie's struggle still continue to ask God to heal her and are so faithful, thank you to all of you. I will update A.S.A.P.
Saw Valerie today, she is awake but very confused. I am so happy, but yet so broken hearted. It grieves me to see Valerie and all these kids struggle for there life. I am confident she will get better, it will just take some time. Her Mom and Dad have also been through so much and they need prayers too.
I visited Valerie today and she is doing a little better. Her memory is a little fuzzy, but that is due to all the drugs she is on. We had a heart to heart talk and it is such a blessing to know this girl. She had an encounter with Jesus and she told me about it, Jesus came to her and she saw Him and talked with him. I have no doubt this happened, what she told me about it was amazing, and so wonderful. I promised her I wouldn't tell anyone. She will tell the story on her site as soon as she is better. We prayed together and that is always one of the best parts of visiting her. Her progress will be slow, the infection was very bad. God ain't done with her yet. So many people pray for her and I know of a couple of people who's hearts have been changed because of how God uses Valerie. I can only hope and pray for just an ounce of the faith she has. Even though Valerie is sick she is always giving God the glory and through the darkest times she knows that Jesus Loves her.
Stay tuned more updates to come.
Valerie is home, she went home last week. I spoke with her today and she doesn't feel well at all. She did ask this "Will you please ask the Lord Jesus to take the pain away from my foot" She is having problems with pain in her foot due to the chemo. At least she is home where she can be comfortable and be with her family.
"Lord Jesus Please take the pain away from Valerie's foot"
Valerie turned 13 years old today. I called to wish her a Happy Birthday, and her Mom told me "She might not know who I am" well what words can I use? I was beyond crushed, not that she wouldn't know who I am. Crushed for her. The drugs, the chemo was making her so confused along with other issues. What can I do? How do I handle this? UGH! I thought the best way to help was to not only pray but to stay away for awhile and give Valerie and her family space. I am learning that I cannot fix all this. I cannot wave the magic wand and make the hurt go away.
Valerie wrote in her journal saying she was better and said she didn't remember her birthday. I called her and spoke with her. It is like talking to an angel. She was soft spoken and I could tell she still wasn't up to par. I was relieved that she is slowly getting better and I am looking forward to her birthday party. She thanked me for everything I have done for her, but I am the one who should thank her, she is wise beyond years, and just shines with the love of God. Thanks Valerie.
Spent New Years Eve with the Dalmau family, what a wonderful blessing and it was the best New Years Eve I have ever had.
Valerie is doing much better, there were issues I won't go into. I will say I was very frightened. God has answered prayers on her behalf. She has a long way to go. Today marks 1 year since I met this beautiful girl, her faith has grown in leaps and bounds, and she is truly an inspiration to not only myself but so many others. She continues treatment, but through the grace of God she is improving.I am the eternal optimist and I will never give up on this girl. She has taught me so much in the last year, I only hope I have been a small blessing to her and her family.
Three steps forward and 5 steps back, or so it seems. Valerie continues treatment, though it doesn't seem to be working to well. There is much going on with her, but I won't go into it. Since my last post I have spent time with her a couple of times. Her faith continues to grow. This road is long and unpredictable that's for sure. We had a bible study yesterday and it was awesome. All Valerie wants to do is be closer to Jesus. I pray for her miracle, but God is in control of her situation so He knows best.
Was invited to Valerie's home so I could give her the song I wrote for her. So the evening was about her, she doesn't like all the hoopla about her. Ok Valerie is 13 and doesn't like the attention? What's wrong with this picture, Hahahahahaha.
She is a humble girl and loves others before herself.
Put the CD in the player and I just watched her expression, I know she likes the song, but her expression really never changed, if it did change it changed to embarrassment. Lourdes, Valerie's Mom cried but not as bad as her Dad, Miguel. He came up to me and hugged me, I was moved and so blessed. Thanks Miguel, you know how much Valerie means to me. You are an awesome Dad.
I visited Valerie today, she was getting chemo, we have been having bible study every week. She was a little grumpy to say the least. It took awhile to get her to tell me what was wrong. She said "I am frustrated I can't walk", and "I just want to be healed". Well more pieces of my heart fell out onto the floor. What can you really say. Help me Lord!!!
I just said that God understands her frustrations, and that she should look to the small miracles and small blessings. I also said what I always tell her. Valerie! Never ever give up.
July 17th. 2009
I have visited Valerie many times while she is getting chemo treatments. She has been in really good spirits. There are issues that I am not at liberty to speak about. I feel in my heart that it is getting close to where the doctors are going to say "We can't do anything more" I learned that they can't even say wht type of cancer she has, therefore they can't target the main cell. I ask myself "how can this be" We can launch space shuttle and do all this wonderful stuff, but doctors can't say what type of cancer a child has. Valerie and her family are going to Puerto Rico for a month, part vacation part meeting with some other doctors to get more info.
August 27th. 2009
I last saw Valerie around July 15th. Still as cute as ever. As I write this they are still in Puerto Rico, and when they are coming home I don't know. The important thing is for her to get treatment. Yeah I miss her very much, but that's me being selfish. I will update when she gets back or when I know anything about treatment on the Island.
September 21st. 2009
Valerie has been given 2 months to live. (See my personal update for more)
Sept 30th. 2009
Valerie passed away at 1:45 am eastern time. Her ministry is complete. Though I am crushed, I know she is with Jesus. I praise God for having mercy on my angel so that she didn't have to suffer any longer.
Oct 5th. 2009
My angel Valerie was buried today in Puerto Rico.
I Love you Valerie. It has been a blessing to be with you the past two years.
MY PERSONAL THOUGHTS
Wed. April 16th.2008
I have faced so many things in the last week. First of all I was at the end of my rope and almost put an end to this ministry before it could even get off the ground.
You ask why? well It comes down to this, I just couldn't deal with the heartache, and depression any longer. I found myself telling God what to do in the case of Laiken. I was telling God "Hey Lord why don't you do something" and "Lord what are you doing here" and "Hey Lord where are you" God answered back by slapping me around a bit, (not really) but, He did answer me by saying, "You need to release Laiken to me and quit carrying the burden, I am doing my perfect work and you are getting in the way, I love Laiken more then you ever will" (OUCH!) I love this girl so much,and
I was becoming a basket case. So I did what God told me to do, I just prayed and released Laiken into His care so He could do what He was gonna do and asked that the burden would be released from me. His Grace, Mercy, and Peace came over me like two arms hugging me. I am much better now. I was however missing the big picture in God's plan for Laiken. I will move forward in His name and to continue His work by His Grace,and show His Mercy to all the kids and parents.
Well it has been 3 weeks since Laiken's passing, at times it has been tough and the tears start to run down my face AGAIN. I know where she has gone, but there is that human element that makes us grieve, when for me it seems strange because how cool is it that she is with Jesus, but then I am sad also. The way I see it our makeup is really out of whack. Do we grieve out of selfishness? because if she were still with us, she would still be a very sick little girl. Or do we grieve because we miss her? That is probably the right answer, because we miss her. I can't nor will I suppress my sadness, my tears, my heart being broken for Stacey and Jim. I just can't even come close in trying to imagine how they both feel, Do they feel like God let them down? probably so, Do they feel cheated? I would say yes, Stacey wrote in Laiken's journal this, "WHY DID GOD WIN SO MANY BATTLES FOR LAIKEN, AND THIS ONE HE CHOSE NOT TO?". A very heavy question if you ask me. Only God knows the answer to that one. I wish I could make the hurt go away, but I cannot. I can pray for them both (and I do always) I can try to lift them up by leaving notes in Laiken's guestbook (which I do) but in reality I can do nothing. Only Jesus can take away the pain, only Jesus can walk and talk with them, only Jesus can give them comfort. I know in time, God will reveal to them many things about this chapter in there lives. This I know without a doubt.
I was only involved in this thing with Laiken for about 8 weeks, it seems like a lifetime to me. 8 short weeks. I feel cheated. Cheated that I didn't know her, cheated cause I only hear about the wonderful things Laiken did. I did see however her display of Godliness in more ways then one. I know this also, Laiken will receive her rewards from God in huge bundles.
As I turn to Valerie, she is such a blessing to Steve and I. I did tell Steve that "I didn't know if I could bare losing her" I refuse to go there. She has become so very, very special to both of us,I know God has a purpose for her. She is a Mom and Dad's child, a big sister to two younger sisters, and has a lot of friends.
I think "What will God do with her?" I wish I knew. Right now all we both can do is be there for her, and her parents. Show the love of Jesus to her, but in actuality she shows it more to us to be honest with you. I was having a hard time praying for her and all the kids, it was like using throw away words, like, "Lord Heal them" and, Lord be there for them" and, "Lord give them Peace, and take away the fear" blah, blah, blah.
I had to go to God and ask Him, "How do I pray for Valerie and the others, without sounding like a broken record" Are there any other words I can use?
God said just pray what you will from your heart, I will hear your requests. Ok so very cool, He did not say "I will grant your request" Hey I know God is going to do what He is going to do, so I just have to believe, trust, and keep praying always. So Steve and I move forward in the name of Jesus, and try to let Him do His work and not get in the way. I already tried that. It didn't work.
Valerie is an continuation of what Laiken was doing in my life, God is using her in so many cool ways. She is getting better and that is so wonderful, it is because of prayer no doubt about it. As I have gotten to know Valerie more and more, I see how God is using her, not only in my life, but the lives of others. She is gifted musically, but more important she is gifted spiritually. God is still breaking me, and I except it with a humble attitude. The Lord saved me by His Grace, and He expects me to give that Grace back, so hopefully with the help of Jesus I am doing so.
All I really know is God loves us all, and We need to Love one another as He loved us. Grace received, Grace given.
Steve's wife is helping Laiken's Mom Stacey out with odds and ends at her home. Stacey gave me the stuffed Bunny I gave to Laiken on Easter, I remember her say she is going to call it Suzi. I can still hear her say it SUZI. She also gave me a nice print of my favorite picture of Laiken. I am so touched by this, but I will be honest, some sadness creeped in. I look at this stuffed bunny and I hear Laiken's voice. I will cherish this forever. Thank you Stacey. Please pray for Stacey, this is still so hard on her.
OK, I have trying to hear God's voice in some situations lately. I am not judging anyone so let me get that out of the way. There are some cold hearts out there in this God forsaken world, and I am speaking about Believers. It was starting to weigh me down. When asking for simple prayer for Valerie, I have gotten sarcastic comments from some people whom I love dearly, however what's with the attitude? Is asking for prayer for a little girl who has cancer a sin? of course not. It is sad to say that a lot of people have lost there first love, but even Jesus said this would happen.
He spoke of hearts growing cold, this is dangerous territory. How can we do the work Jesus commanded us to do when our hearts are cold? We can't. We believers could make such a difference in this country if only we would submit to Him and ask that our hearts be broken. How can God use us to visit the sick, feed the hungry, clothe the homeless, or encourage those who are hurting, if hearts are not broken and hearts are cold? I don't think He can. Some are so hung up on themselves and they're prayers are so self centered. Like "God I need a job,or God give me a new boyfriend, or girlfriend, Yes God is concerned with every facet of our lives, but lets be real here. Are these people living by His spirit, and by His words, or are they living for themselves? I am the kind of person who wants to fix everything, I want to fix the hurts, I want to take away the pain, I want to make people understand. I can't do any of these things. When discussing this ministry and how much I care for the kids I started calling it an obsession, because of all the uncaring comments hurled my way, I was getting paranoid, and falling into Satan's trap. Well a good friend and Brother said "Stop calling it an obsession, it is called passion" So all in all it does break my heart that some I love are so cold and heartless, so I pray that God will break there heart, just as He did mine. I can't help them see or feel no matter how much I want to.
Finally Steve and I started our ministering at CHLA. It took a long time with background checks and shots and all that stuff. We are not wanted by the CIA, so that is a good sign. On a serious note, it is a real blessing and honor to do this in the name of Jesus Christ our Lord and Savior. We started out in pre op and it was packed with kids, and pretty chaotic, well we just played some instrumental stuff and we played "Amazing Grace" on God's spirit moved across the room and it became very calm. We have to be sly in playing Hymns and Christian songs, but we just figure if we get fired for it so be it. We are not worried about it at all.
As we move on we will be playing in all sorts of different areas, personally I can't wait till we can be one on one with a child. Please pray for us that we can do move forward and that God gives us the right opportunity to tell others about His Saving Grace.
Over,Under,Sideways Down. A song from the 60s. This is sort of how I feel at times with all this. I still find myself asking God why? I do need to stop asking this. I also have been asking myself, am I trusting God? am I doing His work in a way that will please Him? This is something I am working through right now. I believe I am trusting Him, and I believe I am doing His work. But still sometimes I have doubts. Maybe this is normal, I mean look at the apostle Paul he had the same feelings at times. I want so badly to understand all this, I think "Well if I could just understand I will be ok" So God points me to the book of Isaiah Chapter 40:28 It says,
"Do you not know? Have you not heard? The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom".
Ok so there it is. None of us will ever understand. So now I know I need to dig deeper into my own soul and let God truly take more control in this ministry. I need to trust Him more, I can't ask why because I will never understand.
Steve and I had our first Pediatric Cancer Awareness concert, It was fun but we had mixed emotions. Valerie and her family came and so did Matthew Rager and his family, I prayed they would come. To add a face to this just shows the reality of it all. I was conflicted inside about them coming, I do not want to be seen as exploiting any child. What I really want to do is have some fundraisers and see where that leads. There are some kids out there who need financial help in one area or another.
I did a radio interview about Laiken this morning. It is for a benefit for Loma Linda Children's Hospital. There is a radio station here KFRG, who does this every year. Well Stacey, (Laiken's Mom) told me about the benefit and asked if I would do a short interview. The benefit is in Oct.
I went to "Light The Night" walk today. Spent the day with Laiken's Mom, Stacey. She seems to be doing better, but no one could ever get over losing a child. It was a great day, I hadn't seen Stacey since Laiken's funeral. She is a focused lady that is for sure, she is relentless in her efforts to help these kids. This is her calling from God. Saw The baby, Laiken's little sister, Abigail, cute, cute, cute.
Thank you Lord for healing Stacey, though it will always be tough, your love over rides everything.
I was a part of the radiothon put on by KFRG a radio station here in So. Calif. We raised almost $500,000.00 for the kids at Loma Linda Children's Hospital Cancer Ward 4800. Laiken spent most of her time at this hospital for treatment. The radiothon was in Laiken's honor and memory. Many thanks to Gene Bridges for putting together the tribute to Laiken and using "Love 4 Laiken" as the background music. It was very effective. Laiken's Mom Stacey was there and though she is still sad, she is doing as good as be expected. Her ministry in this life is to continue helping all the kids with cancer. Thanks to everyone who gave there time to help out, and thanks to all who gave, these are hard times for everyone economically, but people gave and just to let you know 100% of the money goes to the kids.
I feel so alone while on this journey. Yes it is great to minister God's love, and to encourage both the kids and parents, but it is a lonely road. So many friends have abandoned me, but looking back the same happened to Jesus. I understand people are busy and they have there own life, but aren't we suppose to give up our lives for the sake of the Kingdom?. Do I get angry that some don't even give me the time of day, sure I do, but in the grand plan I have to know that it doesn't matter what others say or do. It is just sad to see other believers be so selfish and not care. Bottom line is I do feel like no one supports me. I am blessed to have met so many wonderful kids and parents throughout the country, and I believe that they are praying for me. It is a weird connection I have with all these people. I know someone is praying because I am able to do this. It is not easy seeing children struggle for there life, and certainly not easy watching some die. I can only cling to God and know that He guides my path.
Our commitment is up at CHLA, and it is time to move on. God keeps telling me to move forward. My goal now is to help those kids who can't afford the things that are necessary to keep them alive, like getting to treatment, and help with medication costs etc.
Laiken's Mom Stacey had a celebration of lights in honor and memory of Laiken and about 300 people showed up. Matthew Rager and his family showed up, along with so many who loved Laiken. It was a nice evening. It is also another way Stacey can heal after losing her daughter, but I'm sure God let Laiken see the lights and all the love.
Wow! I can't believe it has almost been a year since I became involved in the lives of children with cancer. First off, my wife Faye and I along with Steve and his wife Jacey spent New Years eve with Valerie and her family. I can honestly say this was the best New Years eve I have ever had. Great food, great company, and great people.
Valerie is doing ok, she has had a lot of issues, confusion and that sort of stuff. She looks so tired. My heart continues to break. I love Valerie so much and I have grown to love this family. Some of you know I have been working on a song for Valerie. Well after much thought and different lyrics everywhere on my desk, I finished it. Thanks to Valerie for helping, I recalled some of the things she has said to me in our conversations this past year and it just all came together. Thank You Jesus, and Valerie. OK back to New Years eve. What fun we had. Took a lot of pictures another hobby of mine. There are two pictures that I took that capture God's Love at least from my point of view. One is Amanda (Valerie's sweet little sister) looking at Valerie and holding her hand while I played Valerie's song. It shows what Love is all about. The second one comes with the same meaning. It is Valerie's Dad and her hugging. Her Mom and Dad and two sisters Love her so much and as I have said this family is the Godliest family I know. I am so blessed to know them and I hope I have been able to bless them back with what little I can offer. Valerie continues her fight and she is going to win because God isn't through with her yet. She is making progress however it is slow, but none the less it is progress. I love you Valerie. I have posted the two pictures I mentioned.
On another front. I am going to be recording a CD entitled "Heros" I am hoping to have it done and ready by this summer God willing. I want to take a percentage of sales and help other cancer kids and there families.
So I learned that today was the day Laiken went into the hospital for the 2nd time to get treatment. Who would have thought she would never return home. There is a new picture on her website with Jim her Dad the day she was to be admitted, and the look on her face told me what she knew was going to happen. Now this is only my observation but the look on her face says that she knew she wasn't coming home ever again.
I have given this much thought. That thought being to write a book based on my experience with the kids. To put my feelings to paper, sort of like I have done on this blog. This will take a lot of time and effort, however with God's help and with His blessing I will be able to achieve this task.
Well the book is coming along slowly. I have been writing a lot of new songs for my CD, both will be completed as God sees fit.
It has now been a year since I first met Laiken, and as I reflect, so much has happened. I have met some wonderful people throughout the country. Met a lot of kids who are just amazing. So much is happening and sometimes I don't give God the glory that I should (My Bad) Yes I do get ahead of myself and God at times. There is also times when I have put the kids ahead of Jesus, not really meaning to but I have done it. This is when I know I need to slow down revamp and pray harder. I am encouraged by the new year, God is doing great things and as long as I put him first, I know he will continue to do great things, not for this ministry per say, but for all who have given him there hearts. You know I was thinking how important ministry was, sure it has it's place, but Jesus is above ministry, above sick children, above all our troubles. Jesus is above all number 1 in any issue we face.
I came across a scripture that says it all to me.
Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms.
As I continue this journey, I am beginning to see all this through God's eyes and heart, or His big picture if you will.So many children have died in the last year. So many parents left with questions as to why.
When God gave this ministry to me I thought it would be all about playing music for sick children. It's like God punked me or something. It's not about the music, it's not even about the children, it's ALL about Jesus and His Love, and his Grace, and His plan of salvation. I have been blessed to minister to parents and children all over the country, I am part of a National Prayer Foundation called "Cole's Foundation. Cole is one of my Rocker Kids. Also was asked to serve on the board of "Zachy's Web of Hope" Zachy is also one of my Rocker Kids. I have become a friend of Zachy's Mother Kelly Johnson. Her heart lies in helping the siblings of cancer kids.
And I thought it was all about the music. I am more passionate today then yesterday, and I praise God for that. He has given me strength to carry on and to deal with children who have cancer. I continue to write my Book, and I have enough songs written for my CD. Both will take time, but it is all in God's timing. As I come upon the 1st anniversary of Laiken's passing, I have mixed emotions. Sad? yes, overjoyed? absolutely. Laiken has been in God's eternity for one year and I'll bet it seems like one minute from His time table. I rejoice that she suffers no longer.
I also believe that her Mom Stacey is starting to heal more from her loss. Again the key is to see it all from God's heart and eyes.
OK I admit I am a slow learner. I need to confess that I was one of those people who always looked for the big flash, lighting in the sky miracles. Well God opened my eyes and showed me that it is the small miracles that count, the small blessings. They are right before out eyes if we would just open them and see for ourselves. Think about it.
A quick update about the CD I am recording. I was looking at maybe August for release, but as these things go most of the time they are never on time. I will just say that it will be a little longer then expected, but this is all in the Hands of My Lord.
Well after a week of the most vicious attack to date on my character and motives in what God has led me to do, I find myself thanking God. Being called a liar and a fraud is really no big deal to me, but what is a big deal is that this attack came from someone claiming to be a believer. I cannot say on way or the other. I will admit I got defensive, right or wrong. All I can say is if this person is a believer, the heart needs an overhaul. This is nothing new to me. There are hard hearts everywhere.
So with that being said, it's been a tough couple of weeks for some parents out there. 4 children have passed in this time. I am sure there are more but this is among the one's I follow. It is so very heartbreaking. I don't ache for the kids, after all they are receiving there rewards, and can now live free with The Lord.
it's the parents and the families I grieve for. Even though a big majority are believers in Christ, there hearts are broken and a piece of them will always be missing. I use to cry all the time, but now I only cry sometimes. My thought was "Am I becoming immune to all this" My answer to myself is No not at all, I just see the big picture, and I see it from God's eyes, in a way. Not completely of course, but I am seeing things a lot differently after being involved in this for 17 months.
I am so blessed to have met so many wonderful people through this journey, and the kids? well the kids are the most amazing to me. I continue to record my CD, and work on my book. Summer is almost here so there will be many fundraisers to attend.
"Please Lord show me the path, direct my footsteps, and help me to always put you ahead of everything"
June 5th. 2009
It just never seems to end. Children dying and leaving parents alone in sadness beyond imagination. Sin is responsible for this, sin is robbing our children. Satan hates children, Jesus loves children, good VS. evil, bad and good, right and wrong. IN life there are two roads to choose from. The children ALWAYS choose the right road. The more I try to bring awareness and speak of my time with the kids, the more people don't get it. People compare losing there mothers who are old to losing a child who is just starting out life. THERE IS NO COMPARISON. I know, we all love our parents but we are not suppose to bury our children. I have been thinking of Laiken lately, that smile, that sweet face, those eyes. I still get kind of sad at times, but God always brings me out of my sadness and reminds me that Laiken is a child of the King, and she is safe. I am worried about Valerie, it seems that the bad days are out weighing the good days. "Please Lord heal her" I was watching one of my favorite TV pastors (I know TV Pastors?????) I don't make a habit of watching Christian TV. Anyway This Pastor had said our job is to pray for healing and salvation of others, but it is God who determines what He will do. We (in general) always want God to do things for us, to answer our prayers the way we think they should be answered. I am trying so hard to not hinder God in how he answers my prayers. I want so badly for him to heal Valerie, and I am doing the right thing by asking him to do so. However it is God who will make that decision not me. His purpose or will is to be done as he sees fit. While I am still here on the godforsaken planet I will only be able to understand God's motives in the smallest ways. No matter how educated I am, even if I had a theological degree, I would never fully understand. When I enter heaven's gates then I will understand. So for now I will do my best with the guidance of God Almighty to learn and seek His face and move forward in order to obtain the heart of the Creator.
July 18th. 2009
I am still here. Sometimes I feel like nothing is being accomplished, then something happens that opens my eyes to realize that God is moving. It is still so hard to know why God chose me. I still struggle with past personal issues. I find it hard to forgive myself.
The Christmas toy drive has started and I am praying that God moves on peoples hearts so children can have a somewhat normal Christmas. I hate thinking of kids in the hospital at Christmas time while we all have a great time. The toys will be distributed at Loma Linda Hospital.
August 27th. 2009
Valerie has gone to Puerto Rico to visit family and friends. Also to check on different treatment. I have been out of the loop for about 10 weeks. It's an odd feeling really. All I want is for her to receive the right treatment so this monster can be slain. One thing is she loves it there, and who wouldn't, however I have found myself being selfish. How? well the thought of not seeing her and her family is hard to swallow. In reality I know I will see her again and I know they will be back at some point. Maybe this is God's way of helping me to put him first instead of the kiddos. The toy drive is still on, the book is still in progress. The CD is on a slight hold. Last Saturday August 22nd. was my second time at "Light the Night" Walk and fundraiser for Leukemia and Lymphoma. I met Sandy Barker, Mother of Christian who past away about 4 months before Laiken. Sandy is a sweet girl, but just as the other parents going through life after losing a child will always be difficult. There are a lot of cool things in the mix, and I will post them here when they are finalized.
September 23rd. 2009
My blog is finished. It seems more like a diary and it has been useful for writing my book. My sweet girl Valerie, has been given 2 months to live. I see no use for continuing writing about myself. When she enters eternity I will post it and give my thoughts and reveal my feelings about how our Love, and friendship for each other has come to an earthly end. Valerie called me and said she had two months. She also said "Don't be sad I will be with Jesus, and I will be with Laiken, and Jessica" I have so many emotions but I hope and pray I can handle them better now then with Laiken. I understand God's purpose in this, I see it from his eyes. It doesn't decrease the pain and heartache, however as much knowledge as I have crammed through my brain the last 21 months, I have a better understanding of childhood cancer, and how God uses all these children for His purpose. She is still in Puerto Rico, and the thought of never seeing her again hurts so very bad, yes I know I will see her in heaven, but for some reason that doesn't ease the pain. She wants me to come to see her, but times are very tough for me right now and I do not have the money, which makes me really feel bad. This will be the first time I have let her down. Even though God has led me to bigger and better things in this ministry, Valerie was the reason for how it operated. With the Love of God, with compassion, with a heartfelt respect and just an all out God like attempt to show her that a stranger does care. I will move forward with the ministry in different ways, being a member of Zachy's Web of Hope Foundation has been a blessing. The CD and Book will be finished at some point. The only thing that will be missing is my sweet Valerie "My hero and my Angel" I do hope she will watch over me. This wonderful child of God will remain in my heart until it stops beating.
Valerie Dalmau, I love you more then you will ever know. God has used you in my life like no other. Without God using you as He did, my life would be empty and void of purpose. May your rewards be many when you touch the throne of God, may you run and play and be the girl you could not be here on earth. I have watched you suffer more then any child should have to, I have laughed at your spontaneous humor. We have prayed together, cried together,had bible study together. I hope I have lived up to what God has led me to do, and that is being a mentor to you. I hope that you have learned something from my limited knowledge of God. I tried my best at all times to be positive and to see to it that I encouraged you never to give up. I always told you that you can beat this, I believed that with every ounce of hope and Love that was in my heart. One of the best moments I had with you was when you were in the hospital and I told you I just didn't know how to pray for you, and then God whispered in my heart and just told me to pray as Jesus said to pray. Which is "The Lords Prayer" we both said it together, and Valerie, that was the most powerful moment I have ever had in my life. All the experiences I have had with you in the past 19 months are written in your song, and I mean every word I wrote. I do see Jesus in your eyes, I always have. When I think of you I think of Jesus. From the bottom of my heart Valerie, thank you for being who you are and displaying the Love of God that we all should show others. I promise you that I will be in contact with Amanda, and Natalie, but mostly Amanda, and I will see to it that she gets through her own heartache. I will always be in contact with your wonderful Mom and Dad, who have been so very gracious to me. We will see each other again, and when we do we will both be in God's Glorious Kingdom. Yes I will miss you more then you can imagine, but one thing is for sure even through my sadness, I will know that you have been made perfect by the God who created you.
I really felt led by God to tell you this.
I love you Sweetie.
Sept 30th. 2009
At 1:45 am Eastern time My Angel Valerie went to be with Jesus.
An important Chapter in my life has closed. I have nothing to write about here any longer.
This Blog/Site really has been a diary, and I will use it to recall the good and bad times. There is so much more to share about my Angel Valerie and that will be in my book.
Not many have read this blog but to those who did, thank you. Remember you can make a difference in a sick child's life, it doesn't have to be big, it is the small blessings that count. Small blessings flourish and grow like a flower when it begins to bloom.
Oct. 5th 2009
My Angel was buried today in Puerto Rico. It seems like yesterday that I met this cute little girl named Valerie Dalmau. I had no idea at the time that I would be so blessed to share her journey. To stand by and watch this evil take control of this girl I Loved so dearly. We had good times and bad times. She was a shy girl in a lot of ways, but also bold in may other ways. Many times I would beat myself up, because I just wanted to fix it all. I wished it would have been me instead of her. But God Loved Valerie, and he had a mighty task for her to do. She had no degree in theology, she wasn't a Bible scholar. She just knew Jesus and knew that God was going to heal her in His way and in His time. I have a lot to process now that she has left this life. She called me on Sept. 23rd and gave me the news but also said "I don't want you to be sad" I said "Well Valerie I will be sad" she kind of got in my face and said "DON'T BE SAD" and proceeded to say "I am ready, I am sick of all this, I am excited to leave, I can't wait to be with Jesus" I was just dumbfounded that a 13 year old girl would approach death with such confidence. Something else that struck me was she had been asking about a girl named Jessica Easley, Valerie kind of knew about Jessica, because I had followed her struggle and she too touched my heart, but out of the blue Valerie was just so enthralled with Jessica. Jessica recently relapsed and will not live long. Well Valerie wanted her phone number so I got it and gave it to her, she called and called and finally one day got to speak with Jessica, and Valerie prayed for Jess,and her Mom, and they talked about heaven, that's all I know about the conversation. Jessica's Mom was truly touched by Valerie's willingness to forgo her own pain to reach out to Her and Jessica. To Valerie she was just being Valerie, however we all know it was God moving through her.She finished the race with Grace and confidence. The last time I spoke with Valerie was Sunday
Sept 27th, it was a short conversation. I said "Hi Valerie how are you doing?" she said "I'm fine I am eating Pizza" Valerie was not fine.. She sounded as though she didn't have a care in the world.She was dying, and she knew it, Valerie was so upbeat and happy. Reality was, her pain was beyond what any of us could ever fathom. On Monday the 28th she started having problems breathing, Tuesday the 29th it got worse, all this time I was asking God to Please take her home. He did early Wed. morning. God had mercy on Valerie and I give him praise for that. What an awesome 13 year old girl. Thanks Lord.
My Angel lives in the hearts of those who hearts are broken.
My Angel was a messenger of God's Pure, and Holy Love.
My Angel was a teacher of God's Grace.
My Angel uttered words that were beyond her years.
My Angel was my gift from God at the right time in my life.
My Angel was a daughter, sister, and friend to all who met her.
My Angel was God's child.
My Angel had wisdom.
My Angel struggled through unimaginable pain without complaint.
My Angel was funny, yet serious
My Angel was courageous.
My Angel had the eyes of Jesus.
My Angel had God's heart.
My Angel had no degree in theology
My Angel wasn't a Bible Scholar
My Angel brought people together.
My Angel was a peacemaker.
My Angel was special.
My Angel was my friend.
My Angel was like a daughter to me.
My Angel is an Angel now.
I miss my Angel.
I Love you Angel, and always will.
Major Cornell. Oct 1st. 2009
Nov 11th. 2009
After careful thought and prayer I will keep this bog/site open. There are just to many children out there who are suffering, and even though not many see this site, I figure if just one or two people do and will pray for the kids it's worth keeping it going. I miss Valerie so much. she inspired me. It seems like after she left for eternity so many other kids followed, not to mention a rash of kids who have relapsed. Cancer is an evil, evil thing. Though my updates will be far and few in between, I will do my utmost to update as much as I can. I don't want to write about myself, so when there is an urgent prayer request or something that is important I will write. Thank you to all who pray for these children, and who show the love of Christ to them. Remember Love is and action. I had said I was going to concentrate on writing my book, well it is too soon after Valerie's passing, every time I try to write I fall apart, it's hard to write through the tears.After the holiday season, I will go full steam ahead in writing and get this book finished.
God's Blessings to all, and to all the children who suffer with this evil disease.
Dec. 17th 2009
The toy drive was a huge success. I couldn't believe how many toys I had. I will be doing this every year and I am calling it "Valerie's Toy Chest" Toy Drive for Loma Linda Children's Hospital.
March 3rd. 2010
Boy it's been a long time since I have updated. There is a lot going on.
I was blessed to see Valerie's parents on Feb 28th, it was her Dad's birthday and also has been 5 months since her departure. The family is doing well, they are healing, and they are at peace. Valerie wrote me a letter right before she died and Her Mom gave it to me. I will say what she said to me was touching, and as sweet as she has always been. It's very personal and I will not share it with anyone. We all miss Valerie deeply,but still wouldn't want her back in that condition. I have no doubt that she would veto coming back also.
Back at Christmas time I attended the 2nd annual Christmas Lights celebration for Laiken, it was nice, and Stacey is healing as well. I am making progress with my book. It is hard to write emotionally, but it will get done.
April 15th. 2010
There hasn't been much to update, but being that come April 22nd, Laiken will have been gone 2 years, I thought I would write about what is happening.
After 8 months I was able to visit Valerie's family to celebrate Her Dad, and her Mom's birhtday. They are doing as well as expected. Amanda and Natalie are both doing well. It was hard to walk into there home and not see Valerie at the top of the stairs, it was even harder to walk into her bedroom and not have her there with that smile she always greeted me with. Praise be to God she has been set free from the evil of cancer. I cannot believe she has been gone for 7 months. I also cannot believe Laiken has been gone for 2 years.
This ministry has taken some twists and turns, all for the good. Laiken's song is going to be used in a childrens book to be passed out at hospitals. The book is for encouragement and to show that strangers care. This will be through another ministry called "The House of Hope" I am excited to see this come to pass. The book is written by children for children, how cool is that.
It's still very hard to fathom how many children die because of cancer, one day I will fully understand all this. Still working on the book. I have enough material for the CD, I just don't have a commitment from the studio owner to finish it. It's all in God's hands no matter how frustrated I get.
There is a little girl, 4 yrs old, her name is Brynn Wood, she passed away 4 days ago as of this writing. I did not know her, but she just touched my heart deeply. Her Mother always posted updates as though Brynn was speaking. It is very amazing the impact this has. Yesterday was Brynn's funeral and this is what her Mom posted. When you read this you will see what I mean. It is as though this sweet 4 yr old girl was speaking.
"I'm watching you! Man I saw it all today, thank you all. I did look all pretty in my pink dress with my pearls necklace on. I just couldn't believe all the people that came to Celebrate My Life with my family. And all those pretty flowers, they are even more beautiful up here. Hey Gran Gran up here God let's me pick his flowers too. Gage I am so proud of you, I know you are really happy for me to get to live with Jesus. I even saw my friend from school, David. I know he loves. I loved all the beautiful songs and all those silly pictures of me. Mommy I know you are sad but please lean on Jesus he told me he will help you. Daddy I know you will miss me. But thank you both for being mommy and daddy. I love you very much and I love it up here with Jesus. Hey guess what I don't have all those bags and water lines up here, I don't need them here. Well I really liked it today when Daddy released the first dove In the name of the Father, then mommy released The Son and Gage the Holy Spirit. That was cool, those doves just flew all over. That was pretty I really liked that. God says I did a great job when I was on earth and yes I really am in Heaven. It's not like anything on earth, it's even bigger than Houston and a lot more beautiful. I ask that each of you continue to pray for children fighting cancer, and all my special friends. Please keep praying for my family"
Brynn is now cancer free, but another Mom and Dad and brother are left without there child. They have strong faith in Christ, but still that faith has been shaken. Pray for Brynn's family.
Sept 30th 2010
Sang Valerie's song at her one year absents service at there church. Nice service, though many didn't know Valerie. They were there to support the family. The family spoke, and her sister Amanda spoke. It was heartbreaking, but a blessing at the same time. I love Amanda, she is amazing. She is covered by the Grace of God.
Dec. 3rd. 2010
Long time no see. It's toy drive time, it's coming along nicely.
Seems as though I have taken 5 steps forward, and 8 steps backwards. Not so much with the kids, more personal. The amount of children dying of cancer and other diseases is staggering, the world is in chaos, and we here are facing a time of uncertainty like never before in the history of this nation. Though overwhelming at times, I know the big picture. God wins..........
Almost 3 years involved in Childhood Cancer has brought to me many friends I have never met, but even with me being an outsider, we do share one thing. A Cure to this disease. It does become very, very political, and we all know how wonderful, and caring our politicians are. My focus is the kids. I have no idea if God will lead me into a situation as he did with Laiken, and especially Valerie. Without Laiken, there would be no Valerie. Her parents are so sad, they are really having a hard time. So are countless others. I know that Jesus is coming soon, and I am still a work in progress. I pray for the kids and families that go through this nightmare, always have, but now it seems more important. Sometimes it's a simple prayer such as Lord may your will be done in these children and there families. Sept. 30th 2012 Its been 3 years today that Valerie departed. I am so thankful she came into my life. I am thankful God brought us together. I have learned a lot, number one don't try to outdo God. I use to call this a Ministry, but Ive realized everyday is a Ministry in one way or another. I/m not sure where God is leading me. I still have plans for the CD which is yet to be recorded. Ive kind backed away from the book. The kids mean the world to me. I still ask God if this is what he wants me to do. I have to admit the support Ive gotten from others has been less then uplifting. Sadly they are Christians. While I was a worship leader at my old church, I was asked many times to tone it down RE: the kids. As if that will happen. Being comfortable and turning your back on sick kids, or the homeless, or the hungry is not what Jesus said.If it wasn't warm and fuzzy no one wanted to hear about it. Well I have this to say. Go ahead be comfortable, you've already talked yourself into not hearing what God has to say. I never said it was pretty, but the Blessings are many, and if it's not in the heart to show compassion, look in the mirror. Anyone of these children could be your children or grandchildren. ROCKER KID STORIES
LAIKEN KENWOOD'S STORY AS TOLD BY HER LOVING MOTHER, STACEY
Laiken is a beautiful 12 year little girl who our Lord and Savior has blessed greatly. Laiken was diagnosed with Acute Lymphocytic Leukemia (also known as ALL) when she was just 9 years old. She has had a tough battle through it all but by the Lord's amazing grace she is still with us today. Laiken has a very kind, sweet, giving and faithful spirit about her. She is loved by so many and I am so proud to be her mother. Today, January 14th 2008 we are going through a double cord blood transplant and with God's grace and healing powers Laiken will be able to live a very full and healthy life.
Laiken's transplant on January 14th did not take so we had to endure another one on March 20th. In early April Laiken was admitted into the ICU for complications with breathing. She lungs were inflamed and we just had no other choice. She was on a bipap machine to help her breathe for about a week and a half. At that point we had to intubate her and 6 days later she lost her battle with life. Laiken went to be with her Lord and Savior on April 22nd at 4:36 pm Tuesday. We did find out on Monday April 21st 2008 that Laiken had 100% donor cells in her little body, the bone marrow transplant took beautifully.
My heart breaks now for I no longer have my beautiful baby girl here on earth with me. I love her dearly and my life will never be the same without her here with me. I know she is in heaven because the faith that she carried with her throughout her journey is the same faith that carried her home.
I love you bigger than the world baby girl!!!! And always will.
VALERIE DALMAU'S STORY AS TOLD BY VALERIE, HERSELF
Back in November 2008, I remember being a normal pre-teen. I attended Foothill Christian School in Glendora, CA and was even part of the Junior Beta Club. I had many friends from all around since my family moved every 2 to 3 years because of my daddy's career. I was born in Puerto Rico on November 28, 1995. My parents then moved to North Carolina were my beautiful sister Amanda was born. Just when Amanda was six month old we moved to Arizona. It was fun there and I always remember the Montessori school I attended for my preschool years. I was so healthy that I didn't have to go to the doctor unless I had allergies or for regular shots. Then we moved to Alabama and then to Washington were Natalie was born. Thanks to the Westgate Christian community, especially Miss Ruthie and Mrs. Parks for their prayers and support. I also thank the St. Columba friends for sending me so many letters of encouragement. I appreciate everything the Washington community have done for me. The St. Thomas More community have been so close to me during this process that I feel as if I never left them. Thanks again!
To continue with my story, I am now part of the CA world. I used to do cheerleading at WEST COAST ALL STARS and I even had an award 3 months prior to being diagnosed. One day while I was cheerleading I felt something weird on my left leg, and then it reflected on my lower back. It felt like a sharp pain and I thought I got sprained or something while tumbling.
My mother brought me to the pediatrician and I remember when he said: "That's just some kind of muscle spasm, so just take ibuprophen and in a week you will feel much better." I am still waiting for that day since the pain got worst and worst every day. I also went to the chiropractor and the acupuncturist and the pain got better but it didn't go away.
I was not able to cheer anymore because my parents didn't want for my back to get any worse than it was. I was so sad since I worked so hard and now I couldn't compete in the first competition in Las Vegas. I also went to the regular doctor two more times but he didn't think I needed X-rays. Since my pain didn't disappear with ibuprophen or cold and warm pads, we went to an orthopedic doctor and had some X-rays and then he recommended an MRI. After further evaluation the doctor referred us to an orthopedic oncologist at the Children's Hospital of Los Angeles. On January 22, 2008 we brought the X-rays and MRI results to Dr. Arkader and he found a tumor or bony lesion in the left pelvis and a lesion on the spine (L2). That same day they did some more chest X-rays that revealed a right lung tumor.
On January 29, 2008 I went back to the hospital for the first guided biopsy and then went back home but that was the worst night of my entire life. I had so much pain that my dad and I had to go back to the hospital and I was on morphine for the longest time. The pain was exruciating, it was like a 20 instead of a 10. Since January 30, 2008 I was admitted to the hospital until April 28th, 2008.
After lots of biopsies they told me I had adenocarcinoma, a type of cancer that is normally not found in kids. This is an adult type of cancer and my uncle Arturo says that since I'm 12 going on 30 I got a cancer that suited my maturity.
I was so scared when they told me I had cancer and I also didn't want to loose my beautiful red hair. I wanted to be normal and I also wanted all of the pain to disappear but it didn't for a while. I really wanted to go back to my normal life but was still weak and many rare things were happening to my body that I didn't understand.
After one of the many biopsies (seven or eight) I had at another hospital (Good Samaritan), I ended up in Intensive Care Unit. I had a major complication were I aspirated acid fluid that went to my left lung. I had pneumonia and was entubated for 4 days. I don't remember anything but my parents showed me some pictures and I couldn't even believe it myself. I had tubes all over my face and the doctors kept telling my parents that I might not make it, but as you all know, GOD gave me another chance.
Radiation treatments began on February 6, 2008 and continued until March 24, 2008. I had 29 radiation sessions. Dr. Lavy and the nurses Sally and Sophie there were great and they really cared for me. I began the first chemotherapy session on February 20, 2008. I have to say that I prefer to have pain than to suffer from nausea. We also had a hair celebration on my daddy's b-day, February 28, 2008.
I had two more challenging episodes where I ended up in ICU [methemoglobinemia] and almost had surgery because of developing a form of colitis. I was discharged from the hospital on April 28, 2008. My fourth chemo session was on May 20th where I stayed in the hospital for just 4 days. Every 21 days I will be going back for chemo if my platelets are on 75 or higher. Please pray for me so that I can continue the healing process.
MATTHEW RAGER'S STORY AS TOLD BY HIS LOVING MOTHER, DENISE
Matthew Rager is six years old, he was diagnosed with a malignant brain tumor in July 2007. He lives in Southern California with his family. This last year has been a journey for the whole family. Matthew had a seizure at 3am on Wednesday morning June 27th, 2007. Paramedics were called and he was taken to Loma Linda Hospital. He had a cat scan which revealed a mass on his brain. An MRI was done and confirmed an 11 centimeter by 7 centimeter brain tumor. Yes, that was a huge tumor, he had no visible neurological symptoms. The doctors could not understand how he was functioning. All visible to the eye parts of the tumor were fully removed on 07/03/07. MRI confirmed the tumor was completely removed. Pathologists all over the country have come to the same conclusion about Matthew's tumor, it is malignant Glioma, but they cannot identify the specific cell type of the tumor. Pathologist were also unable to put a grade on the tumor as it doesn't fit into any catagory. Areas of the tumor had mitosis so it is classified as maligant. Most doctors believe Matthew has had this tumor since conception and it grew along with brain, which is why he was able to develop normally. Because of the unique features of the tumor we decided to go to MD Anderson in Houston, Texas for treatment. He began receiving care at MD Anderson on July 31, 2007. He has had six weeks of Proton Radiation along with Temodar (chemo) everyday. Since radiation he has completed 7 cycles of Temodar, he will have a total of 10 cycles. We should be done in September. All Matthew's MRIs have shown no eveidence of disease, we are scheduled for another one July 8th. We have traveled to Houston every 90 days for the last year and will continue to come back to Houston every six months from now on. Matthew is also treated at Children's Hospital LA while we are home in California. Matthew is doing great and he is a survivor. We thank God for every day that we have together. We know God is in control and that he has a perfect plan.
MATTHEW RECENTLY HAD HIS SCANS, AND THEY CAME BACK CLEAR, THANK GOD.
SINJIN ANDRUKATES STORY AS TOLD BY HIS LOVING, SISTER
This site is for my little brother Sinjin. He was born March 20, 1994 in Killeen, Texas. From Dec 2006 thru April 2007 Sinjin was complaining that his lower right side in the abdominal area was hurting him, so my mom took him to the doctor and they basically said there was nothing wrong, maybe he was having problems in school, causing him to have stomach cramps. The pain continued, so my mother took him to the doctor once again, only to be told once again that there was nothing wrong with him, and that possibly it was growing pains. He went to the school nurse on May 3rd, 2007, complaining that his stomach hurt, she felt something that didn't seem right. She called my mom & told her that she was concerned, and advised my mom to take him back to the doctor immediately. My mother got him an appt that same day. An x-ray was taken that showed something there but Dr. was not sure of what. They scheduled a CT scan for the next day. By 2pm that afternoon the doctor wanted to meet with my mother at his office, he then told my mother that they found a small basketball sized tumor in Sinjin's abdomen and he felt it was one of four types of cancer. He said this in front of my little brother, who then said " Am I gonna die... I am only 13 and I haven't even had my first kiss". The doctor said that if it was Lymphoma it was the worst, he said we don't want it to be that. My mom was so scared, and this only made things worse. They said they would call us for a CT scan needle biopsy date in a few days. He told my mother to send Sinjin back to school on Monday with a note for no PE for 6 weeks, and some Darviset for the pain. We waited for a call on Monday the 7th of May, and we got nothing. Over that weekend Sinjin began to get worse. My mother tried calling the doctor, but he did not respond. On Tuesday they called and let us know that the biopsy was set for May 17th. That date was just to far away so we took him to the ER on Tuesday May 8th. After sitting with Sinjin in the ER for 4 hours they decided to admit him. Thank God they did, It took 5 days just to get his pain under control and then Sinjin had surgery on May 14th to remove the tumor. Unfortunately, they found another mass and removed it instead for biopsy. After waiting 3 days for results we found out that Sinjin has Burkitt's Lymphoma.
SINJIN HAD HIS SCAN THIS WEEK AND THEY CAME BACK CLEAR. THANK GOD.
ZACHARIAH JOHNSON'S STORY AS TOLD BY HIS LOVING MOTHER, KELLY
Zachys battle started the 31st of May 2003, it was two weeks before his 7th birthday. He and his sister (Hunter) had been out of school for summer break for two days. I had been at work all day and Zachy and Hunter had stayed with my mom and dad. After work I picked up the kids and headed home to take them swimming. Zachy was just about to jump in the pool when he started to back up and say "Water". I said yeah Zachy get in the water, he was usually the first in the pool, but on that day he just started shaking his head and repeating the word water. He walked over to me and his right eye was twitching, I asked him what was wrong and all he could say was "water." At this point I had called my mom to see if he had hit his head that day....she said no and I started running with him in my arms towards the truck. Speeding towards the hospital we must have looked like a circus....I was screaming "Zachy don't close your eyes", Hunter was screaming "Please don't die", and my best friend was screaming "slow down you are going to kill us". Somehow we made it to the hospital and they rushed us straight back. Zachy was asked many questions to which he did not remember the answers, but they asked him who I was and he tipped his head to the side and said "that's my momma". We were told that Zachy had suffered a Partial Complex Seizure and since water was the last thing that he looked at before he seized that is all he could say.
That night started Zachys battle....after a CT scan they informed me that he had a "small lesion" on his brain and admitted him to the hospital. Two days later an MRI was done and what appeared to be small on the CT Scan turned out to be a tumor the size of a large lemon. At that time we were told it was probably benign and we were sent to MD Anderson for resection of the tumor. Unfortunately when we arrived at MD Anderson further tests concluded that the tumor was inoperable. It had grown into the crevices of his brain and surrounded the emotion center and grown deep into the insula of his brain. A biopsy was done and we were informed that Zachy had a tumor called an Anaplastic Astrocytoma, a grade III cancer. We were informed that he would start chemo and radiation together in a phase three trial. The radiation was Monday -Friday for 6 weeks and chemo straight for 6 weeks then 1 week a month for a year. That same day we found out I was pregnant with Zachys baby brother.
Zachy had before had episodes of his right hand shaking since he was a baby, and had been taken to the hospital several times and I was told that he was developing normally and everything was fine and now they were telling me that he had probably had this tumor most of his life. The tumor was now too big to be removed and that he would probably live 3-5 yrs. We went home to El Paso and he was seen at Providence Memorial, and was followed by St Jude on this clinical trial.
He seemed to do well with treatments and would tell other children about his brain tumor. He told his grandfather that the tumor would either shrink and shrink or that it would grow and grow and he would die and go to heaven. He would give away his favorite toys at the hospital when we were there, he was always worried about the other children. I asked him one day about why he gave away his favorite toys and he looked me in the eyes and said "mommy those kids are sick they need them more than I do", it was a very humbling experience that continued throughout his treatment. He was admitted to the hospital frequently over the next few months for fevers and tests and always worried about the other "sick" children. At Christmas of 2003 his MRI showed shrinkage of his tumor. Tears of joy were cried and we had a wonderful Christmas together. His baby brother was born on Valentines day 6 weeks early and he absolutely loved holding him. Zachys treatments continued in hopes that the tumor would continue to shrink, and in March of 2004 another MRI was done. Zachy came up to me one day while we were waiting for results and said "I think I am getting sick now." He was starting to have severe headaches and become really tired. He was just generally weak and tired. The results of his tumor were however unchanged since Christmas and the doctors told us that everything looked great. Then on the morning of April 5th Zachy came into my room vomiting very early in the morning. I got him ready and took him to the hospital....he was admitted and started on morphine for his headaches and the next day on April 6th of 2004 Zachy started having Grand Mal seizures. He called to me and said "momma we have to go....we have to go now" I said "go where baby?" at that point he grabbed my shirt with both hands and his head jerked back and he started to seize. He continued to have seizures and we were sent down for an MRI. During the MRI I was standing by his side and saw him take a deep breath and then quit breathing. I ran over to the glass and was knocking on it telling them he wasn't breathing. The tech ran in and when they pulled him out of the machine he was already blue.
At this point I started screaming "please not now God Please not Now....Zachy not now PLEASEEE" I think the entire radiology department heard me. They were able to revive Zachy and took him to ICU and put him on a ventilator. He continued to have seizures and we were told he would not live through the night. He had a total of 17 seizures that day. A neurosurgeon came in and put a shunt in his brain and we were told that during the MRI they were able to get enough to compare to his previous MRI in March. They realized that he had a new tumor growing in the ventricle that drained the fluid from his brain to his spinal cord. The tumor was evident on his March MRI they just had not noticed it and had only looked at his primary tumor. At this point it had blocked the drainage of fluid from his brain and the fluid backed up and basically crushed his brain causing the seizures and him to stop breathing. When the drs drilled to put the shunt in the pressure in his brain was 27 and the normal pressure in a childs brain is around 12. God truly cradled Zachy in his hands during this time as well as us. Zachy was in a coma for a week, I had to tell Hunter that her brother was going to die, the baby was left with my mom and dad as he was only 7 weeks old. Dakotas dad left us because I stayed in the hospital with Zachy. All treatment was stopped and we were told that there was nothing more they could do. After that week we were flown to Texas Childrens Hospital for a second opinion and we were told that there was a phase 1 "guinea pig" treatment that we could try. I agreed in desperation to save Zachys life, but as the nurse was drawing his blood he started screaming. In all the blood tests he had had done before he never so much as cried, and now he was screaming. I asked the nurse to leave the room and sat with him. I said "hey buddy, if you don't want to do this anymore....you don't have to." he said "I don't want to do it anymore momma." and with that we were flown back to El Paso. We stayed in Providence Hospital for a few more weeks. my mom asked me how I could make the decision to not do the guinea pig treatment and I told her that I didn't Zachy did. She asked how I could let him make that choice and I said well he is the one going through it not me. I was told that there was nothing more they could do and hospice was called.
I took Zachy home and he talked to people that had already passed away, he opened his eyes and looked through me....held his hands up toward heaven and so many other things that you may or may not believe. He told me that he wanted to "Go Home" and I told him that it was ok....he said "no mommy I want to go home" I told him I understood. we were already home....so by home he meant heaven, his forever home. He had been telling me when he would go with his hands....showing me the date and I never got it. I prayed to God for a miracle...to let me keep my baby longer. Then I got to where I prayed that if God was going to take him that he would please have mercy and take him out of his pain....then I would feel guilty. I finally got to where I put it in Gods hands and let him guide me. On May 25th 2004, the day after Zachy said he wanted to go home he started having trouble breathing and I knew he was going home. I sat in his bed and held him in my arms, he had his head against my chest and I was telling him it was ok to go. He would quit breathing then hear me crying and start breathing really hard. I remembered that the child life specialist told me that children worried about leaving us and also worried that we might forget them. At this point I said " you know what Zachy it isn't ok, it is going to break our hearts when you go....but we will be fine....Hunter and Kota and I will be together and get through it. We will always have your memories, your love, your toys and pictures and you will always be with us in our hearts. We understand that you are sick and if you have to go.....we understand that. You will always be our hero and we will always love you and we will understand if you need to let go and go home." Two minutes later Zachy got a peaceful smile on his face and he passed away. The first thing he ever heard was my heartbeat and the last thing he ever heard was my heartbeat. He was sitting in my lap, with his head on my chest....my arms wrapped around him and his sister holding his hands. It was the most beautiful, peaceful thing I have seen when he went to be with Jesus.
Life is all in how you look at it. I got my miracles....I got to have Zachy. God shared him with me for almost 8 years, he died 3 weeks before his 8th birthday. I was given the gift of 7 weeks to the day with him after he coded and was revived. I was given the blessings of 3 beautiful children and if it wasn't for God I would never have had them in the first place.....I am blessed with these gifts. I have hard days and some days I cry.....but I know that Zachy no longer hurts, and that he is healed. He always said he wanted to be a bull rider when he grew up and I say that his battle with his cancer was the bull that he did ride and he won his angel wings!! He never complained and never felt sorry for himself. He taught me more in his short life than anyone else has ever taught me.
Chloe Anne Schmidt
I am Chloe Anne. I turned seven years old on January 10, 2008, and am a big sister and the oldest of four!!! On August 21, 2007 (when I was six) I was diagnosed with a rare form of cancer called alveolar rhabdomyosarcoma..
I began chemotherapy at Texas Children's Hospital immediately after diagnosis. The current plan (or roadmap as it is called) is to receive treatments every week for 54 consecutive weeks. Sometimes I have it at the hospital's clinic and get to go home. Other times, I have to stay at the hospital for four to six days so the nurses and doctors can help me.
There have been a lot of visitors and presents, which is so fun! I just love Hello Kitty, Princesses and Fairies and all of the other treasures people have sent and brought for me. I am sharing all of my new things with my four-year-old sister, Phoebe! Eva Marie and Nicholas are still babies.
CHLOE ANNE SCHMIDT'S STORY AS TOLD BY HER LOVING MOTHER, SAMANTHA
I know I have not updated in a long while. Things have been really crazy. I just haven’t really known how to write what all has been going on, in fear that it will make it more true I guess. If that makes sense. Anyways a little more than a month ago we went in for more scans. The first meeting with Dr. Pappo during them was not good to say the least. It was devastating. We found out that the cancer has spread to new areas. And what that means is that it has found a way to beat the chemotherapy. We were told that day that she is now terminal. I was crushed. I think we all were. Of course she knows nothing of this, how could I have told her. They gave her a matter of months at this point, but we still had tests to finish the rest of the week. So we did and then met once more. At this meeting we got some good news, yet at the same time still bad. We found out that the two new spots in her arm and chest are now the only two spots in her entire body. Yeah. What this meant is that she is still considered terminal however they think they “contain” it and give us more time. Not the best news but still better than the first. We then were asked to meet with Dr. Paulino one more time and talk about spot radiation. We did and it sounded good enough to try. We finished our three weeks last Tuesday and she is doing good. She has a little bit of a burn under her right arm, but nothing so severe that it would have been better not to do it. She is enjoying her summer and loving to play in the sun and water. We got season passes to Splashtown and the Houston Zoo so we have plenty to do. We are thinking of taking them to the beach this weekend so that should be an adventure too. I will do my best to keep you all updated on her progress, seeing as how I have got the hardest entry out finally. Sorry it took so long, just didn’t know how to write it. Thank you all for your prayers and warm wishes and we love you all.
SIERRA KESLER'S STORY AS TOLD BY HER LOVING MOTHER, MARY
Sierra was diagnosed with ALL on 12/28/05, relapsed on 3/29/08 and entered her Heavenly home on 5/3/08. We will miss you, forever but we WILL see you soon. We love you.
Christmas time was stressful. Sierra had stopped walking and was in a lot of pain. I am grateful to her Pediatrican who upon noticing that Sierra was not getting better decided to have a blood test done. She ordered it STAT but it was not sent back STAT. When the blood test came back on December 27th, she said it showed suspicious cells and that Leukemia could not be ruled out. I had to go back to the ER (who misdiagnosed her on Christmas Day). From that hospital we got transferred to St. Joseph's Children's Hospital in Tampa. Sierra was scheduled for a Bone Marrow Aspiration on December 28th. That evening Dr. Wynn confirmed what I feared, she had Leukemia. It took a while for Sierra to walk again but thanks to her physical therapy she is walking. She is on the clinical study and is on a Standard arm. On May 23rd, Sierra started Standard Delayed Intensification. A lot of chemo and it has been hard on her but once it is over she will be on Maintenance for the remainder of her treatment. I pray this will be easier on her. During the treatments, we've had numerous hospital stays due to mouth sores, fever. The chemo has irritated her liver. Most kids get heavy and hungry with the steroids but not my Sierra, she has lost some weight. I hear that maintenance will be easier. I pray it will be!! Sierra is currently back in the hospital. She had severe stomach pains. We could have gone home today but she developed a fever. I am thankful though that her appetite is coming back and this phase of her treatments will be over soon.
I cannot write this without some special thank you. My family - your love and support has been tremendous. I can't thank each and every one of you enough. My friends & co-workers - how blessed am I to have each and everyone of you in my life. I wish I can name all of you but I don't think I have enough space. My church - the meals, the prayers, the way you care and love us. You're our anchor. Thank you for understanding me when I get angry and feel my faith going. You lift me up. The Crossings Church - Your prayers are felt so much. My kids Arielle and Dano - Your love and understanding for what your sister is going through means so much. The doctors and nurses - You are all so amazing and make us feel like family. Pediatric Care for not delaying the blood test, in turn it did not delay her treatment. My neighbors - thanks for looking out for us. The Children's Cancer Center - Thank you for getting us through a rough patch, we are glad to be a part of such a wonderful group. The Dream Fund for sending us to Connecticut to meet Loonette. Sierra was in awe of being on the Comfy Couch with her favorite t.v. star. To the Comfy Couch - You made our little girl feel so special. She plays with her dolls and sleeps with them everyday and night. To our new friends that are in the same boat as us. We feel blessed to know you and pray for you all. To my Heavenly Father - you give us the strength that keeps us going.
SUNDAY, MAY 04, 2008 04:52 AM, CDT
It is with an extremely heavy heart that I have to type this. Sierra is now forever cancer free and in the arms of her Lord Jesus Christ. I have no more words to write as this is extremely difficult and we are all still in a state of shock. Please keep us, all who love her in your prayers. I am not sure what to do with this site but am thinking of keeping it as a way to pray for others and still bring forth childhood cancer awareness that needs our help. I will post later with information on her service. Thank you God for giving me an extremely awesome daughter who came to this world to show others true faith and love. This is all for now. God bless us all!!
RACHEL MULLINS STORY AS TOLD BY, RACHEL HERSELF
Hey my name is Rachel Mullins.
I can finally say, now that I am a recovering cancer patient! I was told I was done with my treatments on July 7, 2008. & because my body was so sensitive to chemo, they said i didn't have to do the last two :)
I am very blessed by your visits, comments, and definitely by your prayers. Thank you Jesus.
I was diagnosed with a Medulablastoma, in May 2007. I have done my radiation treatments over the summer, June-July 2007. I had 9 chemo treatments to do. but only finished 7 in July 2008, because of health issues.
I am not mad that I had cancer. It's actually the best thing that has happened to me. It has opened me up to think more seriously about God.
I was experiencing severe headaches particularily at the base of my skull. It got really bad one night, May 4th 2007, to where I woke up crying. Right then, about 4:55 AM, dad and I, were on our way to the hospital. There, they came back with the MRI results, which were not good. It showed I had a tumor at the base of my skull behind my right ear. Early, early morning, (still dark out) we went to Vanderbuilt. & it all began. I was diagnosed with a Medulablastoma. I had surgery on May 10th 2007, and they had gotten it all out, it was easy just because the tumor was in capsuled. It was bigger than a golf ball, but smaller than tennis ball.
SUNDAY AUG, 10TH
I just kinda wanna share with ya'll what is goin' on in my mind right about now......these words are just exploding from my brain to the tips of my fingers......
THE ONLY REASON WHY WE ARE HERE, AND WHY WE LOVE, IS BECAUSE OF GOD. HE IS THE ONLY ONE THAT MATTERS. HE IS THE ONLY ONE WE NEED TO IMPRESS!
Even between the good times & the BAD times. Always, always, ALWAYS, REJOICE & lift him up, rejoice! HE IS AN AWESOME GOD.
.....And isn't it refreshing to know that no matter what, HE WILL ALWAYS LOVE YOU? You can never make him mad, to the point he will never talk to you again. He is the only one that knows your deep, deep, deepest secrets and he will never go telling everyone about them, spreadin' it around.
You don't have to dress up pretty, put mascara on, let alone shave your legs, for him! Whew! That actually takes a big load off us girls hahah..
NO MATTER WHAT WE ALWAYS HAVE HIM WHO LOVES US SOOOO MUCH. That makes me smile!! I LOVE YOU, JESUS! THANK YOU.
I want ya'll to pray tonight, just say, "Hey Jesus.... I want to know you, I want to hear your voice, I want to know you more. I want to touch you, I want to see your face, I want to know you more! Help me praise your name, Jesus. I want to make you happy."
.......Yea, yea, i know that is a song by Sonicflood but the words are perfect....
& give Jesus thanks, especially for everything you take for granted.. simply breathing, walking, living, enjoying another delicious meal! It's all from him, for us.... I THANK YOU JESUS.
Close your eyes. he is right there with you. You are bound to smile because it just feels so good to know you are loved & wanted by him! He is always watching over you. Hahaha, I am laughing a little! I know you are at least smiling!!!!!!! THANK YOU JESUS.
OUR GOD IS AN AWESOME GOD.
JESSICA EASLEY'S STORY AS TOLD BY HER LOVING MOTHER, TERESA
I am 7 years old and have alveolar rhabdomyosarcoma, a rare soft tissue cancer. I had a bump on my leg one day, and the next week I was at ACH having biopsies. I will be on chemotherapy and other treatment for 43 weeks, possibly longer. I cannot go to school or play sports until chemo is finished, and may lose my right leg too. I want to hear from my friends and family during this tough time since I can not see you often.
UPDATE. I did lose my leg as we knew was a possibility. I am going to go to school though, when I feel good, since I go to private school now. I hope to get my prosthetic leg in the next month or so (Sept 2006), and then will have to work hard with physical therapy to learn to operate it.
UPDATE: I did not get my prosthesis until November, and because of the time I spent without a leg, almost 4 months, I am fighting with mom and the therapists about PT. I am content to hop on my one leg, have good balance, and not having 2 legs does not bother me! Mom is working hard at convincing me that when I learn to use the prosthesis I can play basketball again and still compete in swimming, maybe make the Junior Olympics with only one leg! I had looked forward to the olympics last year, but the cancer stopped that from happening.
UPDATE: On Valentine's Day 2007, Jessica was told her cancer is in remission. Thank the Lord for MIRACLES. Jessica will have blood draws/check ups every 6 weeks for awhile to check her progress.
UPDATE: Some issues going on with breathing/shorthness of breath and hair growing in the wrong places; hoping it means nothing. Jessica has scans 11/28/2007 to check her progress. Jessica is doing exceptionally well with "Elvis" (her prosthesis) and is running/playing as any 9-year-old child for the most part.
UPDATE: Possible lung metastases growing in number and size in left lobe of lung on 3 CTs spanning a 9-month time-frame.
UPDATE: All the "ickiness" going on including headaches, weakness, being tired, lack of coordination, etc., did in fact become relapsed cancer. Jessica underwent removal of tumor from back in April 2008 positive for alveolar cells...further biopsies with results yet unknown. She starts chemo AGAIN today, 04/22/2008. Continue to pray as a relapse of this cancer has an extremely poor prognosis.
Jessica is now 9 years old.
THIS IS FROM JESSICA ON 10/8/08
this is jessica i wanted to tell yall the good news myseif dun....dun....dun
i have 2 more chemos but the really really good news is oh wait i forgot to tell yall my b- day is tuesday and the good news is no more dumb cancer whoo that is the best b-day present a person could ever get
THANK YOU JESUS FOR ANSWERING OUR PRAYERS
ZAYLA MITSDARFFER'S STORY AS TOLD BY HER LOVING MOTHER, CHRISTY
Zayla was diagnosed with ALL on January 13 2005. It was a very rocky start for Zay, her port got infected just 2 weeks after being put in and eventually had to be removed along with her pectoralis major muscle. Zay spent 2 weeks in ICU under heavy sedation and intubated to try and fight the nasty sickness that infected her body called pseudonomas aureus. We almost lost her several times during the Induction period. She had a skin graft done in March to cover the "hole" that was in her upper chest cavity. We sailed through Delayed Intensification and up until recently Interim Maintenance has been a "breeze" as well.
Zayla's spinal tap in September came back with two abnormal cells, they couldn't determine if they were leukemic or not so we redid her spinal tap on October 6 2006. On October 9th we would learn that there was NO abnormal cells. On October 12th I lost twin identical daughters (Josephine and Jacqueline) due to Twin to Twin Transfusion Syndrome and premature labor, I was only 23 weeks 5 days pregnant. We were able to save the cord blood from baby Josey, she was not stillborn like her twin sister, but lived only a few hours. Little did we know that less than 2 months later we would be going down the relapse road with Zayla.
On Monday Dec 4 2006 we had a chemo day that entailed a scheduled spinal tap with intratheccal chemo. That afternoon we were to learn that Zayla's cancer had returned in her central nervous system- her spinal fluid had 8 abnormal cells that were leukemic. On Wed we came back to Uof Chicago and had a bone marrow and picc line put in place. Zayla has 104 weeks more of chemo to endure, and a much stronger regimen as well. This is the story of my daughter's relapse and fight against acute leumphoblastic leukemia. **UPDATE** on April 30th 2007 we found out that Zayla needs a bone marrow transplant. We are now in the process of searching for a donor- praying that one of the immediate family is a good match!!! If you haven't done so yet, please go to the National Bone Marrow Registry and sign up to be a donor- it may not be for Zayla, but some other child, mother, father, sibling may need it!! www.marrow.org
All of Zayla's sister's (including umbilical cord of Josephine) were a match!! Doctors opted to have oldest sister Shelby be the donor. Transplant date was July 20th, 2007 and both girls did wonderful!! Shelby is such an amazing young person...when I asked her if she would donate again (even with all the pain) she did not hesitate with a YES! I then asked her if she would donate to a stranger....once again she said YES!! If she can do it (14 yr) then surely an adult can!!! Sign up today to be on the registry!!!
Presently Zayla is home and doing very well....quite bored because she is secluded, but well! Thanks for checking in on us!!
NIKKI HAWKINS STORY AS TOLD BY HER LOVING MOTHER, PENNY
"Mom, my arm feels funny..... Mom, I can't talk right"........
All I can say is a visit to the ER changed our life forever. It started out as any other day - but with one TERRIBLE ending. She said her arm felt numb. I told her it was just "asleep" and to shake it off. She then came to me and with very slurred speech - "mom something is wrong with my face". My heart dropped. I thought she had a stroke as it was the same side as the numb arm. She looked very afraid. We went to St.Josephs where her blood pressure was up and she could not say her birthday or the year it was. But after time you could see she was starting to come around. She fell HARD asleep while waiting to see a doctor. The doctor told us it was ANXIOTY and we would be on our way home soon. But the CATSCAN said otherwise. That night will never be forgotten. It will never fade. Nicole was having a seizure due to the hydrocephalus built up in the brain. She was diagnosed with a brain tumor on April 14th and the medulloblastoma the size of a racketball was removed on April 18th. She has since completed 30 days of radiation and is completed her 14 months of chemo. She did have a port placed as well as a feeding tube. Currently, she is in therapy to repair the "right side" confusion caused by the surgery.
Nik is now in 7th grade and enjoying being at school with many of her friends. She continues to have some right side "confusion" but with PT and OT that should improve. She is a joy to be around. She loves to dance and she sings like an angel. Her FAITH has never once waivered... Her STRENGTH comes from above. I LOVE HER SO MUCH..... SHE IS MY BLESSING!
VINNY DERGEROLAMO'S STORY AS TOLD BY HIS LOVING MOTHER, SARAH
Vinny was born in October of 2003. He was born with a severe Cleft Lip, Cleft Palate, and Pulmonary Stenosis (heart defect). After many surgeries and a few recent complications, Vinny was just diagnosed with Rhabdomyosarcoma.
After 4 years of several cleft-related surgeries, Vinny had a Velopharyngeal Flap surgery in October 2007 to help his speech. Two weeks ago Vinny developed what we thought was a sinus infection, ear infection, and severe Sleep Apnea, which we thought was a side effect from his last surgery. We made a few trips to the Pediatrician, ENT, and to our regular Craniofacial Team. After a scan test at the hospital and another surgery to take down the Velopharyngeal Flap, a tumor was found in the base of his skull, blocking his nasal passages. Part of the tumor was removed, and he was diagnosed with Rhabdomyosarcoma. On Friday he had surgery again to insert his Portacath, and they did a spinal tap and bone marrow test to see if the cancer has spread to other places. We should find out tomorrow afternoon what the results are and then we start Chemo in a few days. Please keep Vinny in your thoughts and prayers.
BAYLER TEAL'S STORY AS TOLD BY BAYLER WITH HELP FROM HIS LOVING MOTHER, RISHA
Hello! My name is Bayler Joel Teal. I'm five (5) years old and live in Bishopville, South Carolina. I go to Robert E. Lee Academy and love my class this year!!
My mommy and daddy are Risha and Rob Teal. I have a brother Bridges who is three (3) years old and is my best friend in the whole wide world!
My Grandparents are Ron (Daddy T) and Daphne (DeeDee) Teal. These are my daddy's parents. My mama's parents are Sandy (Mimi) and Larry (Popi) Matuse and Richard Rhodes (Papa Rick)& Della.
I have many aunts, uncles, cousins, neighbors and friends that love me very much!
My Gigi (Gina) is helping me with this, so if she makes a mistake, let her know!
About two weeks ago, I started feeling very tired and was exhausted when I tried to play. This past weekend at the beach with my family I couldn't play much at all. That's when my Mommy and DeeDee got really worried.
I went to school on Monday and had a really bad tummy ache. My back was hurting too! My Mommy and Daddy took me to the doctor in Florence and he sent me to the Emergency Room for more tests. He thought that I had mono. I was a big boy but I was really tired and just wanted to go home!
The next day, the doctor called Daddy and told him that I had abnormal blood work and that he wanted me to go see a hemotologist (blood doctor). He ran more tests and Wednesday morning he called and said that he was very concerned about me.
He sent me to the Children's Hospital at Palmetto Health Richland in Columbia to have even more tests. The doctors there told Mommy and Daddy that I have Neuroblastoma and that I have a mass in my tummy that is pushing on my kidneys and liver. Neuroblastoma is a very rare form of cancer that only affects children.
My doctors and nurses are very nice to me and are giving me pain medicine to help me feel better. I had a bone marrow test yesterday (Thursday). The doctors say that the cancer is in my bone marrow too.
Today, (Friday) I will have a bone scan and an MRI to make sure that the cancer hasn't spread to my spine/back.
I might get to go home tomorrow and spend the night Saturday and Sunday night before I have to have surgery on Monday. I am sooo ready to go home!! I'm not sure about all this hospital stuff yet!!
The doctors are going to put tubes in my chest so that I don't have to be stuck so many times for my chemotherapy and radiation.
I will be in the hospital for all of my chemo and radiation, but don't worry! My Mommy, Daddy and Gigi will update my journal every chance they get for you and let you know what is happening!
COLE RUOTSALA'S STORY AS TOLD BY HIS LOVING MOTHER, MOUREEN AND DAD, AARON
Cole is a 3 year old little boy who has been a blessing from the start to his parents Aaron and Moireen Ruotsala and his sister Chaneille. He has been a daddies boy always, and his favorite thing to do is play 'corners' with his dad. A game he invented by chasing his dad around their fireplace. He is always wanting to spend time with dad and loves to go fishing and loves airplanes. He is the sweetest little boy who loves his family dearly and loves his baby sister so much! On thursday night July 24th he started complaning of stomach pains. He was up most of the night off and on screaming in pain. His stomach had appeared to be enlarged and rock hard by friday. After Moireen had talked with her mother they decided to take him into the emergency room in ironwood thinking that his appendix might have ruptured. He was checked into the hospital and the doctors ran tests on him most of the night. They new something was wrong but ruled out appendix. At 5:30 this morning, July 26 the doctors thought it was cancer and immedietly transfered him by ambulance to St. Josephs Children's hospital in Marshfield WI. There he was seen by Dr. Mcmanus where he did confirm that it is cancer, possibly Neuroblastoma, (not confirmed yet) the tumor is the size of a man's fist and it has overtaken his left kidney, penetrated his spleen, is moving into his liver, and traces of it have now showed up in his lungs. The tumor is inoperable because it is wrapped around his aeorta and wrapped around his spine. The doctors will be starting more tests on monday to find out what type of cancer it is and then will procede further in trying to figure out the right treatment. Cole is on pain medicine right now and that is their main concern right now trying to keep him comfortable. please pray for Cole and his family, for strength, for wisdom for the doctors and for the lord's presence to flood their room and cole's body. Aaron ask's for prayer that Cole can be comforted and be healed. He also said to cherish every second with the ones you love, especially your children! Thank you so much for the prayers and i will do my best to keep this updated as best as i can.
GRAYSON ARROYO-SMILEY'S STORY AS TOLD BT HIS LOVING MOTHER, MICHELLE
At the age of four, in 2004 Grayson started showing signs of developmental delays in preschool and acting out behaviorally, and although he was never a good sleeper it seemed to become an ongoing thing of being up in the night. When it came time for Kindergarten in August of 2005 we enrolled him in a Private School with a very structured environment hoping that would keep him more focused in school. At our Kindergarten physical we found out that Grayson’s vision was surprisingly bad since his last exam and he needed eye glasses, we were hoping that this would help with some of his problems with his school work. By October of our Kindergarten Year he started acting out more and more in school and we were asked to take him out of the school. We found a “Special Needs” school for him with hopes of helping him catch up and thought that he was acting out because the school work so was difficult.
In May, 2006, he began having a harder time at school and just focusing in general. He was having more bad nights and what I thought were nightmares, talking in his sleep about real things. He had some vomiting which the pediatrician thought was the stomach flu, but then one morning after being up most of the night became clearly disoriented. It was about 6:30 am so I decided to take him to the ER in case he had fallen out of bed and hit his head without me knowing. Of course, by the time we got there he was fine and seemed very normal. The Doctor on call decided to do a quick CT scan, even though there was no sign of head trauma and that is when we saw the mass on the scan. We spent a week in the hospital running tests; two MRI’s, two spinal taps, and more blood work that we could imagine. We knew it was a brain tumor, but the presentation was rare in that it was a diffuse infiltrative mass surrounding the optic chiasm, hypothalamus, pituitary stalk, around the brain stem; throughout the cerebellum and throughout the spine.
In June, 2006, we had an endoscopic biopsy and confirmed that it was a Diffuse Astrocytoma, with some features of a Pilocytic Astrocytoma, which is typically a slow growing grade I tumor, however his was everywhere. Generally these tumors are removed surgically and then followed by chemotherapy if it is necessary. Unfortunately, he was not a candidate for surgery so we started meeting with Oncologists for chemotherapy regimens.
In July, 2006, within a week of getting our Pathology results Grayson started showing signs of Hydrocephalus, so we had our second surgery to have a shunt put in his head to manage his pressure. We started an oral chemotherapy regimen of Temodar at the end of July, and then in August he had his third surgery to have a Port a Cath central line put in his chest. We could then use his central line/port to draw labs from and also administer chemotherapy through it if we started an IV chemotherapy regimen.
We spent most of the summer of 2006 swimming when he was feeling up to it and trying to have fun while I continued to send his case out to other Doctors since his tumor presentation is so rare. We received opinions from three Neuro-Oncologists and opinions from three Neurosurgeons. Typical protocol was Temodar or Carboplatin/Vincristine chemotherapy regimens. We had hoped that the Temodar would start working and at least stabilize the tumor but it continued to grow. Grayson started deteriorating quickly; he was having constant headaches and nausea and vomiting. After a nuclear shunt study, CT’s, and MRI’s showing no sign of obvious pressure we were not sure what was causing the pain. He began living much of his life lying down and if he made it to school he was there with a pillow and a bowl in case he had pain and vomiting.
In January, 2007, an MRI scan showed that Grayson developed a Chiari Malformation, where his cerebellar tonsils were distended down to his C2 in the back of his neck The MRI also showed that the tumor was still growing, it was apparent the Temodar was still not enough to keep it stable. We decided that it was time to change to the more aggressive Carboplatin/Vincristine regimen but we could not start it until after the decompression surgery. The decompression surgery would shave down his skull bone and remove the C1 in his spine to allow more room for his cerebellar tonsils, and also alleviate any pressure that was being put on his spinal cord.
In February, 2007, the morning we were scheduled to have his decompression surgery Grayson was in horrible pain. By the time we reached the hospital surgery center he was so disoriented he did not know who I was, actually he thought I was “Kim Possible”. He became delusional and said that “Spider Man was climbing up the wall” and was pointing at him. It was by far one of the hardest things we had been through. He went into surgery and we hoped that the decompression was the answer to his pain and deteriorating condition. Initially he did very well after his surgery, he was walking 36 hours after his surgery and we only spent two days in ICU then went home to get better.
In March, 2007, he started deteriorating again, another trip to the ER revealed that while he was off his chemotherapy in order to have his surgery the tumor started growing again, this time much more aggressively. It had grown between his ventricles blocking his shunt and trapped the right lateral ventricle. Again, he was back in the Operating Room to have an extension put in his shunt to alleviate his hydrocephalus. We spent nine days in ICU and during that time we started his first round of Carboplatin/Vincristine chemotherapy. When we finally got to go home, Grayson started having horrible anxiety episodes; I could not leave him to go to the kitchen. He would get up and start looking for me although he was in no shape to be walking on his own. Considering what he had been through he seemed to be doing well physically, but this was a point where we really felt like we lost a big part of our boy. Emotionally he was not the same; he had memory loss, permanent vision loss, behavioral outbursts and anxiety that keep him from doing the things he once really loved.
In May, 2007, after our initial treatment round of Carboplatin/Vincristine we finally got some great news. The tumor was shrinking and Grayson seemed to be getting a little better emotionally, unfortunately he got Peripheral Neuropathy which was causing him pain and trouble walking from the Vincristine chemotherapy. At one point he was pulling himself on the floor to pieces of furniture to help him get up. We decided then to discontinue the Vincristine and continue only with the Carboplatin.
In June, 2007, we started physical/occupational therapy to help rehabilitate him. I really wanted something he would enjoy and did not want to spend yet more time at the hospital so we found a therapist that would come to the house and he did it fun, Karate Style. Grayson really took to this and loved working with “Sensai Wayne” his Occupational Therapist with Karate for All.
In July, 2007, we moved from our home in Orange County into our Auntie Tammie’s home in Studio City. With all that was going on with Grayson, we really needed the support of family. We started our chemotherapy regimen at CHLA and I began the search for therapy and schooling when I found a Pilates for Kids Program. In August, 2007, Grayson started private sessions with Nicole Brandon’s group at Artistry in Motion and he really seemed to do well with it. His mobility, strength and balance improved tremendously in just a two month period, but most importantly he loved going to the studio. He was a superstar there and everyone became to know and love him.
In October, 2007, he started at Carpenter Elementary School with a full time aide to accompany him and keep him safe throughout the day. He attended when he was feeling up to it and it helped him start developing social skills once again. He had not been in a social setting with other kids regularly since his diagnosis and his behavioral issues complicate a school environment and learning process. Grayson has lost his peripheral vision due to optic nerve damage so we are trying to teach him to learn with his “new brain” and the way he sees and processes information. Unfortunately, Grayson started having pain episodes which landed us in the ER once again. A CT scan ruled out any immediate signs of hydrocephalus but we knew that his shunt could be failing intermittently.
In November, 2007, after over a month of horrible bouts of pain we knew we had to do something, so we decided to have surgery to either replace the shunt or the valve that may not be functioning correctly. The surgery was a best case scenario, they found the tip of the valve was clogged and that was causing the intermittent hydrocephalus pressure. Bits of tumor can float in his Cerebral Spinal Fluid and clog the valve of his shunt and cause pressure changes at any time. Grayson breezed through the surgery and came home to recuperate and enjoy the holidays. We knew we had a long healing process ahead of us because Grayson had been on chemotherapy for so long that his body could not heal itself as quickly as before. He got a minor infection in his incision just before Christmas but luckily his body finally healed itself. It took six months and daily care for his incision from this surgery completely heal.
In January, 2008, we started working with Master DonVito at Karate 4 Kids. Grayson was really missing his Karate and he had made so much progress in his Pilates that I felt it would be a bit more challenging. This has also enabled him be more in tune with his anxiety and help him control his aggression which has become more prevalent in this process.
In April, 2008, our scans showed that the tumor had begun to grow again. We had our last dose of Carboplatin on April 11 and then Grayson was on chemotherapy break. A break from the needle which he still has horrible anxiety with every week until we start our new regimen of Vinblastine.
On May 23, 2008, we had our first dose of Vinblastine. I was very hesitant to start this chemotherapy because Vincristine had caused him so much pain and neuropathy. He still has drop foot, difficulty going up and down stairs and cannot stand on his feet for any long periods of time, even after a year of trying to rehabilitate him.
In June, 2008, after his third dose of Vinblastine he started having intense pain in different parts of his body; arms, legs, stomach and his head. These have been much worse than the pains that we have been accustomed to managing with his on going chemotherapy regimen. He also developed low grade fevers and chills and my worst fear; what he calls “vibration” is back in his feet. That is the Peripheral Neuropathy that we got from the Vincristine. The episodes of pain that he has been having with this chemotherapy have been unbearable, sharp intense pains throughout his body that his heavy duty pain meds cannot relieve. His blood cell counts dropped dramatically after the second dose and more so after the third; we are now holding his chemotherapy until his body recuperates. We had another MRI which showed minimal tumor growth in some areas if any; it is always hard to be sure exactly because there are so many variables in comparing scans. This was great news considering we were off of chemotherapy for six weeks and the tumor was showing growth while on chemotherapy; however, we are still very disappointed that his body is not tolerating the Vinblastine as we had hoped.
In July, 2008, we traveled to Washington, DC and signed up for a Phase 1 Study of two drugs, Tarceva and Rapamycin. These medications have individually been proven to treat cancer cells, however we are hoping that the combination of both drugs together will be more effective. It is our hope that this treatment will not be as toxic as some of the on going chemotherapy regimens that we have been doing over the last two years.
KARLI COSTLEY'S STORY AS TOLD BY HER LOVING MOTHER, AMY
Karli is a happy and active 3 year old. In August of 08, she was diagnosed with retinoblastoma. Her roller coaster journey has landed us in NYC for intra arterial chemotherapy. Please join Karli's prayer warriors! Sign the guest book PLEASE!
Karli Costley is the vivacious BABY of a busy family of 7! (Mom-Amy, Dad-Kevin, Brothers-Brandon 21, Braden 8, and sisters-Murph (Kayla) 16 and Alyssa 6!) Karli made her presence known before she had been alive for 24 hours and has not stopped since! Karli is known to most anyone who has seen her by her big baby-blue eyes and eyelashes that could sweep the floor! How ironic it is that the very thing about her that would grab you deepest in your soul is now the same thing that is diseased and threatening her life?! On August 28, 2008, Karli was diagnosed with retinoblastoma in her left eye and also had a lesion zapped in her right eye. At that point the Drs recommended that she have her left eye removed, completely, so that she will have the greatest chance for complete cure. It is hard to understand how God could give us this perfectly beautiful child with these eyes of an angel, and then expect us to allow them to take one of them back from her.! We have concluded that God made those eyes so dramatic so that they would capture the hearts of all of you and increase the number of people drawn to witness his work here! We set the appointment with the occuloplastic surgeon on Thursday Sept. 4 and met with him regarding removing the eye. While there, he told us he had heard that we were interested in more information about a new eye-saving procedure by Dr Abramson. He allowed us to ask questions and gave us the options that we had been hoping for. We asked him to give us the weekend to think it over and pray about it and we would know by Monday. We also went ahead and put Karli on the schedule for the enucleation. On Friday morning, he called with the specifics of the procedure and by Sunday morning, we were on the plane to New York’s Memorial Sloan-Kettering Cancer Center! We are taking part in a clinical trial where they infuse chemotherapy directly into the eye via a femoral artery catheter. She had her first treatment on Sept 10 and then returned to New York for another exam on Oct 7. The doctors were extremely impressed with the tumor regression and even noted some reattachment of the retina. She received her 2nd chemo dose on Oct 8 and we returned to NYC for our fourth visit on Nov. 23!. She again had remarkable response to the last treatment and he says her retina is "now back in place" and she is showing signs of eye muscle activity. He stated the main tumor appeared DEAD, a mere shadow of its former self! There was still some active seeding that must be killed for the treatment to be successful! We returned Dec 16th and the Dr stated that while he was impressed and that we were still WINNING, we had not won yet and these "seeds" are still there and must be killed to have a cure! He treated eye in 5 places with cryo and also used a slower method of perfusing the eye with the chemo. We return Jan 20 for her next exam. On this visit, we will likely have to make some decisions about our next therapy if this has not done the job.
We are still watching the right eye closely and will have genetic testing in the near future , as well.
While our hearts are hurting deeper than we ever imagined possible, we are also very aware of how lucky we are to have discovered this disease in a curable state and that we have our baby to make this site for! We are overwhelmed with people to keep updated, and see that as a great problem to have! We hope this site is helpful for you to keep up with her, and send messages to her and us! Thank you for caring enough to follow our baby and please continue to pray for God's power and hands in this. We do plan to print these messages and keep them for her to have one day, and see how many people she moved and how many people cared about one little girl!!
COLYN MCDANIEL'S STORY AS TOLD BY HIS LOVING MOTHER, ANGIE
You go through life and hear about bad things that happen to people but you never expect it to ever happen to you. Well, I guess that is what we were all thinking and then it happened- cancer joined our family and changed our lives forever. We were all busy living our lives. I was healthy, happy, and enjoying being a 4 year old boy. Then all of the sudden with no warning and nothing to prepare us I was diagnosed with something called Rhabdomyosarcoma- a rare form of cancer that affects around 250 individuals a year. My form of Rhabdo is Alveolar with no translocation of chromosomes which happens in about 20 individuals a year.
20 individuals a year? Why me? Was it something I ate? The environment I live in? Was it something my parents did? Did my sisters will this on me…yea that is it? I wish there was something that we could identify as to why. I don’t know why but I do know that it happened. We stopped asking why and started asking how to we keep this Rhabdo from taking my life. The statistics show that this cancer will take the life of 8 of the 20 diagnosed. The treatment plan to destroy the cancer cells is a brutal plan…let me tell you…it is. We do believe in my doctors at Children’s and the national Children’s Oncology Group (COG) protocols which gives me the best chance to win this battle.
I have been raised to have faith in an all powerful God and to believe in a God that answers prayers. I thank all of you so much for your thoughts, help and prayers during my battle. I am confident that God will heal me back to 100% strength so I can become a soldier in His army.
James 1:12 “Blessed is a man that perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him"
Deuteronomy 4:7 “…our God is near us whenever we pray…”
Luke 18:27 “The things which are impossible with men are possible with God”
SAMMIE HARTSFIELD'S STORY AS TOLD BY HER LOVING MOTHER CHRIS.
Our 9 year old daughter Sammie was diagnosed on November 24, 2006 with Osteosarcoma in her femur. After many tests and a lung biopsy the doctors have confirmed that it has also spread to her lungs.
Sammie's treatment finished in September of 2007-
Jan 30. 2008- biopsy shows not sign of cancer or infection!! Thank you GOD!
Feb 11th 08 - No Evidence of Disease in lungs!!!
March 5th 08- MRI shows the S1 of the tailbone is crumbling. Another biopsy is needed to rule out a relapse..
March 13th 08- confirmed relapse in the tailbone will start chemo March 23rd..
March 20th 08- 2 tumors in her left lung to beat as well....
May 08- Tumor removed from S1- not sure they got it all.
May 08- Chemo resumes
Sept 2, 08 - thorocotomy - 1/4 of left lobe resected also found two more tumors not seen on the scan. All tumors were still alive. Three rounds of chemo left.
Oct 31st 08- Last round of IFOS/ETOP completed.. Scans Nov 18th 08
Nov 18th 2008- All scans are clear
Jan 13th 2009- tumors in both lungs and tumor in sacrum the S1- will begin radiation
March 09 - one round of chemo proved to be too much.. no more treatments
Wednesday, March 26, 2008
God's timing can be so strange. I have been a Believer and Follower of Jesus for 40 years, and I admit not all of those years did I walk with Jesus.I have asked many, many questions of Him, one being "Why Lord am I just NOW seeing things in the way they are meant to be seen". To be honest I feel like a retard. Not really, but one wonders.