Journal History

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Friday, October 15, 2004 5:10 AM CDT

It has been 1 month and 2 days since Trever bravely left us to return to our heavenly Father. I am Nana, Trever's grandmother, and this is the first time I have journaled on Trever's web page. My husband, Mike has done all of the updates to date and we both thank all of you who have been sending your love, prayers and support. Since I spent all of my time caring for Trever, it was only recently that I was able to personally read all of the guestbook entries and Mike's journaling. I am so touched by all of you. I also linked to several other web pages, Carter Martin, Conner Hunley, Ian and many more who recently joined Trever in heaven. Though it was heartwrenching to read about their journeys, it let me know that we are not alone in our sorrow and struggle to pick up and find our way through the gutwrenching days that follow when one we love so much is gone from us here on this earth.

It is only in knowing that Trever is no longer suffering and that he has returned to our Father in heaven after completing a job here that only he could do, that I can keep putting one foot in front of the other each day. I am grateful for the joy and love that I personally was priviledged to have so much of from Trever in being chosen to be his caretaker since he was 22 months old. In looking back over his 5 short years, it is clear that he was here with a mission...to teach all of us unconditional love and unconditional forgiveness. Trever was a wise and strong man in a little boy's body and his favorite role was being a knight. Other times he was a soldier, a cowboy, an indian, a power ranger, Superboy(friend of Superman, Batman, Robin and all the superheroes)...anyone who was strong and fought against evil. He was wise beyond his years and has brought healing to two families and multiple friends he met along the way. I am still getting reports from people who have changed their focus and their lives because of Trever's influence. I know he is smiling down on all of us and is proud of both his mother and his father and the changes they have made in their lives. He never complained about his plight and always faced his hardships with determination to get them done and get back to life's adventures.

Before he died , he spent time with each family member and those friends who were destined to be here during his final days. Everything he did had purpose and meaning. As I look back at the last few months, it is clear that he took me on a journey that would open my mind and awareness to alternatives that were new to us and I will be forever grateful to all of the alternative practioners who gave their skill and knowledge to us and made Trever's path as comfortabe and pain free as it was. I learned that nutrition and organic foods play a major role in our health and their are many holistic measures that can be used in conjunction with or sometimes instead of Western medicine consisting of just chemo, radiation therapy and surgery. I wish I had this knowledge in the beginning, but I also know that Trever's path is as it was supposed to be. So the purpose of all that I learned is yet to be revealed to me. I do know that Tahitian Noni Juice played a major role not only in his quality of life, but also in ours. Had I researched this sooner, I would have given it to him from the beginning as it has helped many in reducing the negative effects of chemo and radiation without interfering with their purpose. I could not have gotten through the last 2 years without drinking noni daily, as I had migraine headaches, carpal tunnel in both wrists, fibromyalgia, arthritis and high cholesterol. Mike has diabetes and drinks it to keep his bood sugar level in spite of his love of french bread! Since drinking this juice, I am drug free and pain free. It was the only thing that releived Trever's cough in the last weeks, so he could sleep some and without it I could not have survived 3 weeks with no more than 40 minutes sleep at a time. We saw Trever's chiropractors, Drs. Cohn and McCoy (who helped him with NMT and NET therapies) and his (cs)cranial-sacral therapist daily and they were able to keep him off IV's and pain meds for the duration of his relapse and hospice. He chose who he wanted to see and when and I will never forget the kindness of Trulie, his cs therapist who came to the house and stayed up with him for the last 40 hours of his life. She kept him from pain, dizziness and nausea and I will be forever grateful to her.

There is much information on the web regarding alternative treatments and after Trever's relapse, we persued these with a vengeance. There were multiple sources that indicate white sugar feeds cancer and that cancer cannot survive in an alkaline or oxygenated body. We waded through many strict diet recommendations and alternative treatments, but could not find specific data to support success with relapsed rhabdo at any of the alternative treatment centers we visited. Just try getting a 5 year old to completely change what he eats and drinks!...no matter how perfect it may be, Trever just wouldn't do it. He also did not want any more invasive treatments, like IV therapy, so we did our best and went with those he would tolerate. I know there are a lot of charlatan's ready to take your money in times when we are so desparate to find a way to save a loved one, but there are also many skilled and caring holistic practitioners who really can and do make a difference. I gathered far more experience and information than I could possibly write about, so if you have questions or information you would like to share, please post an e-mail to me on www.tni.com/4968.

The holidays will be especially difficult this year, but to continue on with anything less than the courage and determination of finding our purpose in life as Trever showed us would be a dishonor to him. The quiet is still so very hard and we will never stop missing him. I would like to leave you with an entry I found on Ian's web page. It helps me each time I read it and again, thanks to all of you for your prayers,love and support. Please continue to keep us and the other families who have lost their children or have children still suffering with illness in your prayers.

"As difficult as this time in your life may be, you will become stronger if you face each day with patience and hope;
if you accept your weaknesses but concentrate on your strengths; if you love and care for yourself even when you are angry and confused; if you can look at doubt and fear but keep your mind on the fact that the struggle is helping you to grow in faith and confidence. If you gently pick yourself up when you fall and continue walking; if you keep thinking about all the things you can do well, all the things that bring you joy, and all the people you love who also love you; if you hold on to your goals even though the way to reach them may be unclear, then...You can see the troubling times almost as friends who have come to help you grow further than you thought you could; friends who are showing you the way to a more courageous heart; friends who help you to see that you are more powerful than you ever thought you were; friends who help you to see that the hard times are making you more open to accepting life as it comes, and realizing that you have the inner strength and loving nature to deal successfully with any difficult moment." -Donna Levine Small
Tara
Madison, NJ USA - Wednesday, September 22, 2004 1:05 AM CDT

Thank you, Tara for sharing this on Ian's web page.
God bless us all.

Tuesday, September 28, 2004, 9:45PM WCT

It has been two weeks since our beloved Trever went to God’s Neverland…..and it has been tough.

We miss you today,
We missed you yesterday,
We'll miss you tomorrow,
Just as we miss you everyday.
We think about you every day.
The hugs, smiles, ‘I love you’, and your zest for life….
You live in our hearts and in our memories.
For us today is no different than Yesterday
-except you are no longer with us here on earth, but with GOD in heaven’s Neverland.
We love you Trever, Always.

Some people come into our lives
and quietly stay.
Others stay for a while,
leaving footprints in our hearts
and we are never the same.
Author Unknown -- from a friend Frieda Holman


Tuesday, September 21, 2004 9:01 AM CDT

Thanks to everyone who came to Trever’s Memorial Service.
We were surprised and sorely missed on the counts, so we came up short in several areas and we apologize to all that came and could not see the service. We started out at 150 and went to 200, thinking we had it covered…and missed by 100%. For those that did not get a program, could not see nor hear the service, but waited the hour outside to pay tribute to our Trever, THANKS…..AGAIN.
It was a gallant tribute to our Knight.
The program:
A Knights Farewell
Trever Vincent Peck
September 19, 2004

Prelude Eleanor Baldwin, pianist
Opening Hymn “I can only imagine” Duet
Welcome Linda Kelly
Father’s Message Vincent Blaschak
Mother’s Message Read by Hillary Benedict
Scripture Readings and Special Thoughts
Chris Blaschak
Lauren Kelly
Justen Sweeting
Tess Ford
Reflective Moments “To where you are” Shannon Fowler
“Fly” and “Because you love me” by Celine Dion
Eulogy Pastor Steven Bland
Solo “I’m going to go back there some day"
Trulie Langer
In Remembrance George Amoroso
Knight’s Tribute Mike Kelly
In Remembrance Trulie Langer
Open to guests
Closing Pastor Steve Bland
Recessional “My Sisters and Brothers” by Jerry Garcia

This is from TESS FORD, a 16yr old darling lady and friend of ours who wrote this poem
Hi Mike and Linda, It's Tess. I wrote this poem a while ago, and didn't know when the best time would be to give it to you. I wasn't even sure if I would because poetry is very close to me and my heart. When I heard the news, I thought that I should. Here it is...

This little boy
I used to know
With eyes so blue
Skin white as snow

We used to play
And laugh a lot
With their eyes
Full of distraught

He didn't care
He'd play along
He'd keep on singing
His favorite song

Most his life
He's been sick
The light burns close
To the end of the wick

His sickness is cancer
It's hard to believe
That soon enough
It's time to leave

But his life was great
To the very end
Through every twist
And every bend

He was never afraid
He'd always fight
He'd give his best
Give all his might

He steps out of the dark
And into the light
Going to heaven
High in the sky

He'll look at us all
With his happy eyes
Praying for us
Being a personal spy

He'll look down on us
Flashing a smile
Knowing his life on earth
Was worth while

I hope you like it. I really did love him and I miss him already. I love you two and am very happy to be a part of your lives. I am also happy that I was a part of Trever's life and that he had such great parents (you two) to be with him through everything. He was happy and will always be. Just know he's looking down on everyone right now and praying to the head-honcho, making sure the rest of what we have to live is as happy as his. He knew more happiness then I possibly ever have. I just want to let you know you are always in my prayers and will always.
Love,
Tess

LETTER FROM HEAVEN

TO MY DEAREST FAMILY, SOME THINGS I’D LIKE TO SAY
BUT FIRST OF ALL, TO LET YOU KNOW, THAT I ARRIVED OKAY
I’M WRITING THIS FROM HEAVEN, HERE I DWELL WITH GOD ABOVE
HERE, THERE’S NO MORE TEARS OF SADNESS; HERE IS JUST ETERNAL LOVE
PLEASE DO NOT BE UNHAPPY JUST BECAUSE I’M OUT OF SIGHT
REMEMBER THAT I’M WITH YOU EVERY MORNING, NOON, AND NIGHT
THAT DAY I HAD TO LEAVE YOU WHEN MY LIFE OF EARTH WAS THROUGH
GOD PICKED ME UP AND HUGGED ME AND HE SAID, “I WELCOME YOU
IT’S GOOD TO HAVE YOU BACK AGAIN, YOU WERE MISSED
WHILE YOU WERE GONE
AS FOR YOUR DEAREST FAMILY, THEY’LL BE HERE LATER ON
GOD GAVE ME A LIST OF THINGS, THAT HE WISHED FOR ME TO DO
AND FOREMOST ON THE LIST, WAS TO WATCH AND CARE FOR YOU
AND WHEN YOU LIE IN BED AT NIGHT THE DAY’S CHORES PUT TO FLIGHT
GOD AND I ARE CLOSEST TO YOU IN THE MIDDLE OF THE NIGHT
WHEN YOU THINK OF MY LIFE ON EARTH AND
THOSE FIVE SHORT LOVING YEARS
BECAUSE YOU’RE ONLY HUMAN, THEY ARE BOUND TO BRING YOU TEARS
BUT DO NOT BE AFRAID TO CRY; IT DOES RELIEVE THE PAIN
REMEMBER THERE WOULD BE NO FLOWERS, ULESS THERE WAS SOME RAIN
I WISH THAT I COULD TELL YOU ALL THAT GOD HAS PLANNED
IF I WERE TO TELL YOU, YOU WOULDN’T UNDERSTAND
BUT ONE THING IS FOR CERTAIN, THOUGH MY LIFE ON EARTH IS THROUGH
MORE THAN I EVER WAS BEFORE, I’M EVEN CLOSER NOW TO YOU
THERE ARE MANY ROCKY ROADS AHEAD OF YOU AND MANY HILLS TO CLIMB
BUT TOGETHER WE CAN DO IT BY TAKING ONE DAY AT A TIME
IT WAS ALWAYS MY PHILOSOPHY AND I’D LIKE IT FOR YOU TOO
THAT AS YOU GIVE UNTO THE WORLD, THE WORLD WILL GIVE TO YOU
IF YOU CAN HELP SOMEBODY WHO’S IN SORROW AND IN PAIN
THEN YOU CAN SAY TO GOD AT NIGHT “MY DAY WAS NOT IN VAIN”
AND NOW I AM CONTENTED THAT MY LIFE WAS WORTHWHILE
KNOWING AS I PASSED ALONG THE WAY I MADE SOMEBODY SMILE
SO IF YOU MEET SOMEONE WHO IS SAD AND FELLING LOW
JUST LEND A HAND TO PICK HIM UP, AS ON YOUR WAY YOU GO
WHEN YOU’RE WALKING DOWN THE STREET AND
YOU’VE GOT ME ON YOUR MIND
I’M WALKING IN YOUR FOOTSTEPS ONLY HALF A STEP BEHIND
AND WHEN IT’S TIME FOR YOU TO GO, FROM THAT BODY TO BE FREE
REMEMBER YOU’RE NOT GOING, YOU’RE COMING HERE TO ME.

_____________________________________________________________________

Author unknown – a note left at memorial service

Trever at 6:30 he died
Poor little Trever never lied
We shall not mourn
Even thou even our hearts are torn
We lost the boy we love so much
He really had a very special touch
Trever wasn’t even seven
When God opened the gates to heaven.


From Lauren Kelly Trever’s Aunt
Trever Rules to Live By
Be a Prince to everyone.
Knight others with kindness.
Make a friend of everyone.
Talk about what you love to anyone who will listen.
Make all the girls feel like princesses.
Play, Play, Play & Play some more.
A bad day isn’t anything that cannot be solved by a sword fight or jousting match with POP.

Tuesday, September 14, 2004

Memorial services to be held at Fairhaven Memorial park at 11AM, Sunday September 19th, 1702 Fairhaven Ave Santa Ana CA 92705 – one block south of the 22 freeway and between Glassell and Tustin Boulevards. Reception to follow.
In lieu of flowers donations in Trever’s memory can be made to the Orange County Make-A-Wish foundation
(Trever was in their 2003 and 2004 calendars) at 14232 Red Hill Avenue, Tustin CA 92780 or to the John Henry Foundation (where Trever’s mother lives) at 1515 N. Broadway, Santa Ana CA 92706.

Trever had his own style of letting us know his wishes. Several months ago Trever, out of the blue, told Nana (Linda) that when he died, he wanted to be burned ... he did not want to be put in a box and left in the ground. Linda said you mean 'cremated' and Trev said "yes and then you take what's left after your burned..." (Linda) 'you mean your ashes?..."Yeah, and you put the ashes in one of those things like mom has for Bud (Randee's(Trev's mother) dog who was killed by an auto and then cremated)).... (Linda) ' an urn?...." yeah, only I want a gold one or gold and silver one and that way you can take me with you everywhere you go." Linda said Trever, I will probably die before you, since older people die before children. Trever said, that's OK, then you can be cremated and I can take you everywhere with me. Per Trever's request, he will be cremated so he can always be near his beloved Nana.

Monday, September 13, 200411:29 PM WCT

Trever took God’s hand today September 13th at 6:25AM, 2004. He passed away in his sleep gently, quietly and peacefully. We know our Trever is blessed and safe with God in heaven and we are comforted by knowing that the love and prayers offered by so many were answered. In his final hours he got to say goodbye to his family and friends. He knew he was going to a better place and there is much to celebrate both here and in heaven for the gifts he gave us.

For Trever:
You are in God’s NEVERLAND as you wished and wanted. You will never grow old, never have hurt nor pain again. You will never be alone, for we are and always will be with you, in our minds and our hearts. You have our everlasting and bountiful love. Your lessons of unconditional love and forgiveness, undiminished courage, your everlasting strength and passion for life will be honored and cherished by all who love you so very much. You are our hero.

We will think about you every day,
the hugs, the smiles, and especially your ‘I love you’s’.
You will always live in our hearts and in our minds.

We love you Trever, Always.

Sunday September 12, 2004, 10;30 AM WCT

A quiet night. Around 3:15am Trever indicated that he wanted everyone to come to the bedroom. Those of us that were not in there at the time were aroused and went to see our Trever, with the expectation that he was finally going to be delivered into God’s good graces. We were to be foiled by a body that will not surrender, even though Trev several times clearly indicated that he wanted to leave. Our death watch becomes insupportable after a while and one has to leave in one’s grief as it is too powerful for most of us and we do not want to impinge upon Trever’s space with our sadness. He knows what is going on—we are amazed about his ability to feel and know what is going on We implore heaven to bless our Trever, and to make his remaining earth time as peaceful, painless, and quiet as possible. We can tell that he is reconciled with God and his fate, even though most of us struggle with the age old question of WHY? The lessons we have been taught, shown by his courage, love, gracefulness, and lust of life have been a most difficult price to pay. They are ones that are full of redeeming grace, divine mercy and a happy immortality. He will be flying to the bosom of GOD to be comforted and cherished forever.
And he will be missed and forever Loved.

Saturday September 11th, 10:30 AM WCT


The passion, quest, and lust for life that so dominated his life is still in control, and Trever is still with us. Last night we had a large number of family and friends both come by and stay with us through the night in a prayerful and caring environment. Trever is still attentive and watchful, though he spends most of his time in the fetal position. Needless to say we are all grateful that he is not in any pain, other than he needs his back rubbed occasionally. He continues to exhibit the courage and braveness that has been a mark of Trever through most of his life. That he does not complain, cried only once, and speaks not of his ever worsening condition, is and has been an exemplification and embodiment of his character and the special ness of our brave Trever. We are and will be forever grateful for our Trever experience. We watched in these several months the spark of his life ebbing and his spirit slowed by the ravages of a body that no longer gave him the energy needed and betrayed by an affliction that showed no mercy. All of this time his spirit, courage and being such a ‘good soldier’ in handling what none of us could stop or change was a testament to his ever loving spirit and determination. What a guy!!!!!

Friday, September 10th 7 AM WCT

Last night we decided that Trever should have his last rites, and were lucky to have been able to contact Father Viet Peter from Holy Family Catholic Church in Orange who also baptized Trever. We all said the Lords prayer and … Trever sat up and smiled. We expect Trever may make his journey with the angels sometime between Friday and Sunday. More on our service on Wednesday night… it was a quiet and reflective time for all and the outpouring of caring and love was enormous. Many neighbors came to the house and lit candles and prayed with us on the porch. Then they all trouped up to our bedroom to see Trever and he loved it. He sat up for the longest time in 2 weeks. Our home continues to be filled with the love coming from everyone's prayers.
Thursday, September 9th 6 AM WCT
Trever is still with us. Our candle and prayer vigil last night was very successful. Trever got to see most of the kids that he played with in the block, and when they came upstairs to see him, he asked that they stay for a while and they talked about the fun times they had. He sat up a lot of the evening. We did the Lord’s prayer and the 23rd psalm outside on our porch with a lot of the neighbors showing up to participate and contribute. I meant to add this in yesterday’s update. We had his IV line taken out Wednesday morning after midnight, as Trev had pulled on it earlier in the eve, and it was bleeding – he didn’t want it in. His face has drained some, so he can now see out of both eyes, so our hydrating him had both a plus and a minus, and Trev had it figured out. Yesterday morning, Trev sat up, looked around, and Kris Blake (One of Trev’s Make-A-Wish sponsor who has been very supportive of Trev) asked if there was something she could help him with, and he said ‘I saw where I am going, and it is very beautiful’. He has known for some time that he was going to go and be with God, when we were giving him a bath Tuesday morning, he said ‘Nana I do not want to be here’, and I said but we are just going to give you a bath, and he said ‘NO, I mean not here’. What does one say?? We said nothing, being taken by surprise at his comment, gave him his bath, which he let us do without much comment.

Wednesday, September 8th 12:32 PM WCT
We sent out this email Tues evening…

'Our precious Trever will soon be with God and everlasting peace. We would appreciate one more kindness on your part. Wednesday evening at 7:00pm West Coast time, we ask that you join with us in lighting a white candle and say a small prayer, asking that these last times on his journey home be peaceful and painless. We thank you for your continued support, caring and prayers on this difficult journey for all of us.
With love, Trever’s family.'

Trever has not been eating or drinking much since Friday evening. On Sunday we made the decision to have a pick line put in so that we could hydrate him. Hospice came out Sunday evening, and or course could not get to a vein to put in a catheter, so we took him to Kaiser Emergency and they finally got one installed after 3 tries. Trev was a real soldier and only said please hurry up. His right eye had been red for a couple of days and while we were at the hospital, the Dr. looked and same and said it was infected and gave us a prescription for same. He also agreed that these last days on earth he should not to have to fight the effects of dehydration which are very painful we are told, and was glad we took measures to have him hydrated thru an IV. The ER Doctor remembered Trever from his visits over two years ago …..Trever always made his mark. Since he has not eaten, he has begun his decline into God’s hands. His face has been swollen for some time and is getting progressively worse. This morning he could not open both eyes as they were swollen shut. Possible after effect of hydrating him as his body cannot dispose of water because of its deteriorating condition. He lies in a fetal position now as that is the only way he can breathe and only sits up to resolve his uncomfortable ness. A sad thing to see, but all of this is so sad and so emotionally draining. Trever had visitors yesterday, with Mrs. Anderson, his teacher from Fairmont Schools stopping by to see him and the staff from Kaiser Pediatric also dropped by, giving us another chance to thank all of them for their support and caring. We did get to have a precious 4 + good and wonderful years with an active, passionate, loving and a very special child who will be missed. This does not include the 9 months in treating the cancer that did not stay gone, which was a trying, yet special time for us, for we learned what a real treasure we had in Trever. Trever had a passion for life that we saw every day after his first bout with cancer, he wanted to play with his friends, stayed up past 11PM most nights watching TV and did as much as his little body would allow, always pushing the envelope. Did he know that his time was measured on this earth? Looking back one could come to that conclusion.
Renee is coming back from their group vacation in the bay area to be with us in these last remaining days.

Tuesday, September 6, 2004 12AM WCT
Trever is not long for our world and will be with God soon.

..Here is a message from Linda to all of our friends and family...and same for me..Mike

"Your love, warmth and caring will long be remembered. Trever is in his last days and these are the hardest of times. It is so very difficult to watch the life lights dim and barely flicker for such a brave little man. He has been such a role model for facing the challenges of life and taught us to live with love and forgiveness for each other. I am especially privileged to have been chosen to be with him in a mother role.
Love and hugs, Linda"

Sunday...
Its been almost a month…
This past Friday a group came in from Tucson, including Aunt Renee and Uncle Dennis. Trever was happy to see them, and when asked, he said for them to go on their vacation. Trev is not doing well, and several times we thought that his time had come, but he still is hanging in there. His plea “I cannot breathe’ comes more often, and since he can no longer move around much, his plea is for someone to move him into a position where he can breathe better. For a while his voice was troubled, but lately when he talks it is like the ‘old’ Trever. This morning when I visited him (he now sleeps in our bed with Linda and I am in his room on the bunk bed) he had a smile on his face, in the fetal position, with his right leg under him. Oh if we could read minds. On Wednesday, Linda finally said that we should begin to make arrangements, but we have not taken steps. She is still optimistic. Today we agreed, and Trev also agreed to put in an IV and get him some Liquids. This will occur tonight.

Here is a note from an email Linda sent to a friend middle of the week.
Trever is hanging in but has lost his appetite. He seems to waver on whether he wants to stay in this world or not. Even though we have let him know it is OK to go, he said he wants to fight and yet he also knows he cannot live without eating and drinking and he is not making much effort with that. Just when I think he has decided to go, he does something contrary. Today he was so anxious to go to his therapy that he insisted on being put in the car 40 minutes before we needed to leave. He waited quite patiently while his mom and I traded off sitting with him in the car. About a week ago, when he was still pondering whether or not he wanted to fight this thing, he asked" If I get well, will I still get to see my doctors?" It was like he was weighing the pros and cons of getting well and wanted to be sure he could see them even after he was well. They are chiropractors and therapists, but he thinks of them as his doctors. I think it‘s the positive healing energy, honesty and care that he feels coming from them that attracts him. He definitely tries to distance himself from people feeling sorrowful and fearful.

I know he has accomplished more in his 5 short years than most do in a full lifetime. I am uncertain if there is more for him to do this time around or not...that is between him and our Creator. I also know he has been a gift, a healer and a teacher for all of us who are close to him. There is more to learn and perhaps can only be learned by his leaving us now. Perhaps we are to witness a miracle of his healing...although, he has already brought healing for all of us. Whatever the plan, I pray he will not be suffering very long.

Monday August 23rd, 2004
For the most part Trev has had a good week, but he is wasting away. He is so frail and his legs and arms are so thin-just bones. His face has some swelling, and his breathing is still labored. He is hanging in there. Aunt Renee came in from Tucson this weekend, and he perked up a bit. Linda has been taking him to some therapists and they have helped him deal with his condition, helping him to breath, and in keeping his edema somewhat under control. In one of the sessions this past week they talked with him about life and that it would be OK with all of us that if he wanted to go live with God, that it was his decision, and that while we would be sad(an understatement), that he would always be with us. We wanted him to do what he wanted to do.

Sunday, August 8, 2004 7:03 AM CDT

It has been a while since I have updated the web site. Trever has had his ups and downs. His edema is under control. His coughing spells take their toll, as he has so little energy. He varies on his eating, and he continues to loose weight, and muscle tone as he is not doing much activity. We try to get him to at least walk to and from the bathroom, with little success. He is so thin, just skin and bones. For this past week, he has been in better spirits and seems to have an improved outlook, is giving hi fives, can look at you when talking and feels good (his version). This week he has been talking more than he has in recent times. He has had minimal pain, and that is a blessing. On Wednesday after one long coughing spell, I went over to him to see if he was ok, and said ‘this being sick really sucks’, and he looked up at me, his eyes so soleful, and said ‘sure does’, then looked down again. On Friday, the hospice nurse said it looked like his right lung is no longer functioning, as she could not hear any breathing from same. She also said that his heart rate has increased due to his labored breathing, and was worried about same. I asked her if his silence and not wanting to talk about what was happening was normal for children of his age, and she said yes, but they know what is going on and choose to not to talk about it. I guess it is a blessing , since I have no idea on how I would respond if that time ever came, though I have thought about it so many times. Aunt Lauren came in from Phoenix, but our visitor rate has slowed down. Friday night, he ate up a storm, having cottage cheese, tortilla chips with cheese dip and chili. This was the most he has eaten in a while. On Saturday night he said he wanted steak, so when we sat down for dinner with Lauren and Justen who had come up from Huntington Beach to see us, he did not want to eat then, and said he would eat later. Later came and he fell asleep without eating. Through all of this, Linda still remains very optimistic. Trever requires 24hour non stop support, and Linda sees that Trev gets all the attention that he needs. She takes him to Newport Beach daily for his therapy sessions, which have been helpful in getting his edema to go away, and in getting Trever in a better mood. We have talked about being so grateful that we both are retired, and really feel for those parents who have to undergo this kind of support for their loved ones, while still having to work.

Week ending August 1, 2004
His face arms and legs are much better, however his stomach area has grown. We have seen another Oncologist at Kaiser, to see what else we could be doing to help Trever. As Linda talked with the Oncologist, Trever and I went out to the lobby area, with me carrying and holding him as we waited. I tried so hard to get him to talk about what he was feeling, and could not make any headway. He just looked away from me. He has been doing this lately with everyone, not looking into their eyes is one change we all have noticed. He has a sadness about him that is hard to explain, it shows up in his eyes, his unwillingness to talk and his speech. We have had visitors every day. On Wednesday eve, one of our close friends came by to see Trever before they take off for their vacation to Europe. When they left, we all walked them out with Linda wrapping Trever in one of his blankets. When we got outside, the neighborhood kids were outside playing. Trever did not want to go in, and watched them play. You could see that sad, forlorn look in his eyes. This is getting to be much harder than I could have ever imagined. Renee and Dennis visited this weekend. Trev is still hanging in there...but you can see that his passion for life is waining, he laughs very little, smiles are gone, and when he hurts he asks for the 'pills', is hardly walking, and the glow in his eyes has all but disappeared. Sunday morning he was in very good spirits, and even took on Renee and Dennis in sword fighting, even though it was short. He just does not have the energy for much activity. Later on, Linda and Renee and Rayln took Trever to San Diego to do more treatments, while I took Dennis to the airport. Renee leaves on Monday. They got back around 10Pm. Trever said that he had a good day, but was not doing so well now. He was trying to throw up, and was really working at doing this, causing him to struggle in breathing. His breathing has been labored, but this is the worse that I have seen in him. He was really struggling to breath. One evening his coughing had taken a turn for the worse, and he was sitting in the corner of the couch, coughing and trying to breath between coughs, with a Kleenex in his hands wiping away tears from his left eye(remember the cancer was originally in the area around his right eye, and the radiation stopped his right eye from tearing—we have to put in drops every hour). It is the first time I have seen him cry since we started in this journey. This time it was not from any pain, hurt or anger, but just his way of coping …..and he said ‘please get me another kleenex’ as he struggled for the next breath.
But he is still with us and is as loving as ever..

Sunday, July 25, 2004 9:30 AM WCT

You can find more pictures at
http://home.earthlink.net/~treverpeck/

Sat Jul 23rd
Several quiet days have given us some respite. Trever has been in good spirits and has been playing quietly. Friday, Aunt Renee came back from Tucson to spend the weekend and Trever was very happy to see her again. We have had lots of visitors and Trever has been very accommodating, talking and paying attention to them--most of the time. His cough still comes and goes, but he has had two good nights of sleep with little interference from the cough. On Sat he started complaining about pain when he coughed, and when he stands to go to the bathroom. His current medication (Tylenol with codeine) did not stop this latest pain episode, so we asked for something stronger, and were given Hydromorphine to give to him starting out at ¼ pill dosage. Tonight, while others went to Hibachi Steak house, we stayed home with Trever (we know he is not feeling good, since he elected to not go), and Linda took him upstairs to his playroom. I went up when Linda came down to do some chores, and asked Trever if he would like to swordfight (his favorite activity with me). He was sitting down behind one of his forts, putting soldiers in place, and he looked up at me with the saddest eyes that I have seen in a long time, with his swollen face, and said, “Sorry Pop, but I can’t because I am too sick”. I had to leave the room, and get composed, stop crying, and came back to help him work on his forts. This only lasted a few minutes, then he wanted Linda back, and they went downstairs to watch some television. We tried to do the Myers push, but could not get an IV started, and it was tried in two places. Needless to say Trever was really mad and upset at doing all of this. He has been playing poker a lot with anyone who will take him on. He has learned the game recently, and plays with the most stone face that one can make, and succeeds. If the cards are dealt right, he plays them well, and as the song goes-- knows when to hold and when to fold----and he wins often. He woke up this morning in good spirits and smiling..though his chest hurts and asked for his 'pill'.
I asked if we could play swordfights today and he said 'yes', then he asked if afterwards could we do a gun fight? I said sure, anytime and he smiled and said later, with him saying 'you know what gun I am going to use?' His other Grampie got him a derringer, and ever since it has been his most favorite 'weapon', he especially brings it with him to the poker games, so that if there is any cheating, he can shoot the bad guy. Well we did teach him all of this, so we are guilty, but it is really funny as we all sit there playing poker, with short sleaves, and he is looking for the cheaters--those who slip in cards hidden in their sleaves.

Thurs Jul 21st
It has been a few days since our last update. Trever’s swollen face is still with us and it has gotten better, but is still swollen. He is throwing up every day, and of course is not eating much, though at times he does try, but cannot seem to get much down, or any that will stay down. Hospice Nurses, Social Worker, and Doctor all have visited. We have oxygen in the house ready for use, and have it installed in the family room where he is now sleeping with Linda on one of the couches, and Trev on the other. We have the oxygen generator on with the cannula close to his face.
Thru all of this he has not complained, has not cried, still smiles, laughs and gives big hi fives, kisses and hugs. It teaches one a lot about life and what is important.

We have decided not to do any intervention with Trever as it would only prolong the inevitable outcome and make it more difficult for him and for all of us. However, since he is not eating as he should, we have decided to try giving him some nutrition via IV. We have something sent to us by an ND called a Myer's cocktail. We will try it once and see if it gives him a boost (and hopefully help his immune system to kick in).
We have been told that the body reaches a point where it doesn't want food because the body’s systems are shutting down and the food doesn't get processed causing more discomfort. Not wanting to eat and sleeping a lot occurs as these systems shut down. For Trever, we believe and hope that he will most likely follow this pattern and go in his sleep. We are praying that if he cannot be healed, that he will go quickly in his sleep and not suffer long. It has been so hard to think about letting him go. We know this life is not our final destination. Trever will be taking God’s hand before all of us and he will be waiting to greet us when it is our time.....which in the universe is but a flash in time. Love and God's blessings give all of us strength and guidance thru these difficult times. We love all of you all for your caring, sharing and prayers for Trever.

Mon Jul 19th
Trever had a relative quiet night. Most of the early day he slept and watched TV. His face is a bit swollen, and it is getting progressively bigger. The prediction that the pressure on his organs would cause problems with blood draining seems to be on track. So far there is nothing that they are recommending to fix same. Hospice came by again today to work on what to do for pain management. Trever complained today that his stomach hurt….so we now have in addition to Tylenol, Acetaminophen with Codeine to give him if he needs it. He threw up four times today, and this really seems to have made a difference. Late in the afternoon he was up, played Ladders and Chutes with Linda, played a lot with his Gameboy Shrek game, went outside with the kids next door after they had come back from dinner and with Mike prodding shot off the rest of the left over 4th of July ‘poppers’. After the poppers, Trev wanted to play baseball, so for over a half hour, with Mike pitching and Trever catching they played baseball. Trev at first did not want to bat, but then decided he could do it, and sure enough he hit a few balls, with one being a really good 'home run' hit. His dad showed up around 8, so we ended the game. Trev went back into the house with his dad and picked up where he had left off on his Gameboy and showing his dad how the game was played. Trev again wanted to go to the Jacuzzi, so Linda, Vince(dad) and Trev went to Estribo. They came back, and Trev wanted to sleep downstairs on the couch in the family room because he can sleep in one of the corners, keeping his body somewhat upright. We also hope that in doing this that it will help in draining, since his head will be up. So today was a better day.



July 18th 2004

We finished up Friday with his other Grandma (Marsha) coming over and the arrival from Tucson of Renee and Dennis. We told him that they were bringing him a surprise gift, so they made the day, because Dennis had bought a Red Ryder Daisy BB gun and brought it out for Trever. He was so excited when he saw them, not because of the surprise gift, but just the way he smiled, greeted, hugged and kissed them. We were so glad that they made the trip out if it was only for the short time they would be here. Unfortunately they have to get back to Tucson and left on Sun morn. It took a little bit of time before we had to bring up the surprise gift, and then when we did, Dennis opened the box and gave Trev the gun. He could not wait to get going and to shoot it. Dennis set up a cardboard box with lots of stuffed paper, taped on a target, loaded the gun, and they went out to the back yard. Trev got a bulls-eye first shot---and then throughout the weekend, they went out and did more shooting, with Trev doing very well on hitting the target. Mike and Linda left to go to Pat and Debbie’s wedding in Newport Beach on one of the ships. Pat & Deb are marrying after a long relationship. Pat is brother number 2 out of five, with Mike being the oldest. It was a great time, with the Kelly clan outnumbering the guests. Saturday was Mike’s birthday, but it was a quiet day and we wound up at Hibachi Steak House (Trever’s favorite place, and favorite food is shrimp), with Linda’s sister and husband coming in from Temecula to join us. Gina joined us as well. Trev did eat, but again not enough. His cough has subsided a little, so it is not as stressful for him..this part anyway. However, he is weak, and sleeps a lot. Linda finally talked to the Radiologist and the news from the Friday CT scan was not good. The tumor has grown to be over 8cm, has definitely collapsed the right lung, and appears to be pressing towards the left side of the body. It will start interfering with some major body parts in the central part of the body. It looks it already is having an impact as he woke up Sunday morning with his face swollen a bit. We were told that to watch out for this as it could be a blockage of the artery that drains from the upper body. Trev is now having some other discomfort of pains in his chest, knee and elbow joints, with every now and then a headache. He still had a fever yesterday afternoon of around 100, and giving him Tylenol has helped. He is still taking his antibiotic to help combat the bacterial infection from the beginning of the week. So far we have been so lucky that he has yet to experience the ‘tough’ pain, though we know it is coming.. At dinner on Sat night, after eating he laid down to rest. We had fresh strawberries, sponge cake and vanilla ice cream for Mike’s birthday cake. In addition, we finally got involved with the Kaiser Hospice program, with a Nurse coming out Saturday afternoon to start this process.

Sunday has been a quiet day. Trever slept a lot of the day, wanting to be held when he is watching TV. We had dinner and the family whose daughter has done some babysitting for us came by to see Trever, and they did get to spend about a half hour, then left to go back home. All of us crying…….as they left. Trever laid down back on the couch, watching TV, but then falling asleep. His dad left and will be back on Monday. Trev wanted to go into the Jacuzzi, so Mike, Linda and Trev left to go to the Estribo house to use the Jacuzzi there. Trev, usually very active in the water, this time went under once with his goggles on, came up and because of his problem with breathing no longer wanted to be active, but did stay in the water.

FRIDAY..Jul 16th.
Trever went to bed early, but got up early. Linda took him today for another Catscan(CT), and Linda could see that the tumor has grown, and it has collapsed his right lung. We are waiting for the actual report from the hospital, but it does not look good. He has no energy, and his cough comes and goes, but it lasts longer and occurs more often. Trever has been going downhill and has a bacterial infection that has zapped him pretty hard. He is a little better today, but doesn't eat much and has no energy to even walk any more, wants to be held a lot and has sarted to complain about some pain that comes and goes but does not seem to bother him.

Thurs..Jul 15th.
Trever had a reasonably good night, coughing a few times, and no fever. Things are better and we are very grateful.

Wed…Jul 14th
Today turned out to be a much better day than previous days. Trever went to bed coughing and had a fever. Around 1 am, his fever broke and he had a fairly quiet night, with him waking just a few times coughing. This morning he was up around 8am, wide awake, cheerful, but still coughing. He did eat more for breakfast than he has recently. Around noon, we decided to play his new Sponge Bob computer game, which he did sitting on my lap for about 15 min, then he quit. I picked him up and carried him into the family room to watch TV, and he wanted me to stay by his side. His temp started creeping up, and he again said that he was not feeling well, and wanted to sleep. His Grandma-Marsha (fathers mother) came by at 5pm, they cuddled and talked. His temp climbed to a little over 102. By 6pm, it had been as high as 103, so Linda decided to take him to the emergency room at Kaiser, to see if we needed to get him some antibiotics. They determined that it was more bacterial rather than viral, and prescribed an antibiotic. In coming home, he asked for his normal Taco Bell burrito kids meal, which he did eat, but not as much as we would have liked. He is in good spirits and much more active, but still is plagued with his cough. His dad came over again around 8pm, and at 10:30, they decided to play poker with Nana, while I am here doing this.
Tues..Jul 13
Trever is eating literally nothing. His cough has increased and he has been vomiting throughout the day, cannot keep what little he eats down, and the fever has returned. He sleeps a lot and doesn't have the energy to play with his friends...his favorite thing to do. He is having more difficulty with his breathing and he complains of pain in various joints...leg, elbow mostly...that seem to come and go. He just doesn't feel good and is also getting head aches. He has to be carried everywhere, even to the bathroom.

Trever had been hanging in pretty strong until about 4 days ago when he started taking a downward turn. He has almost no energy, eats almost nothing and is refusing to take the supplements we have been giving in capsule form. He was doing this well, but has decided he is just tired of it all. We are not sure if he just wants to give up or it is just temporary. This evening, when I asked him how he doing, he said ‘not good’. Up until then he had always said OK, or GOOD, orsome other positive comment. It is hard not to keep from crying--one is so helpless. He is such a precious gift.
Our prayers have been for strength and guidance and a miracle if God is willing. If it is his time to go, then we just pray that there will not be any suffering, and if we have to endure same, that it not last long. It's all in God's hands and we are still trying to provide the highest quality of life for whatever time we have remaining. We're still hoping it will be a long time, but only if can be quality time for him.

Oh where is that miracle?????

Mon, Jul 12th….
All day today he has been sleeping, or watching TV, eating little, and of course coughing.
His temp has been in the 100’s most of the day. We finally got all of the legal issues with his dad resolved, and he came to visit Trever around 5pm, and stayed until 9pm. They had a good time together, and it looks like they have patched things up. Trever felt good about the meeting and really was happy to see his dad. He had a tough night, coughing most of the time, and had a fever until 2:30, when it literally broke, and one could feel the drop as his body went from ‘hot’ to normal in just a few minutes.

Sun, Jul 11th.
Trev cough is off and on since he has been up. We decided to go to see “King Arthur” and Trev invited Cole from school, and Evan from the neighborhood along with his mother and Gina. He fell asleep half way thru the movie. We came home, and he played with Evan for a little while, and then sent him home. He did not want to play anymore--not a good sign. He had been coughing and finally gave up, wanting to be held and cuddled in Nana’s arms watching cartoons. He did this for the rest of the evening, either lying in his mother’s arms or with Linda. He has not eaten much lately, and it’s having its toll and making it much tougher in his battle with his cancer. He does not walk very far and when we do go anywhere, he puts his arms up in the air and says ‘up’, and sometimes ‘up please’. I gave him a bath before the movie, and he would normally want to play in the water, and be in the tub for a long time. Today, he fought with me over having to do the bath and the possibility of having his hair washed. Even this small issue started him crying, and speeds up the coughing. When he is crying, he always asks, ‘I need help to stop crying!’ wanting to be held. We pick him up and hold him, telling him how much we love him, that he is our most favorite guy, and that everything was OK, he could stop crying. I told him that we could stay at the movie theater after ‘King Arthur’ and play on the game machines. That got him into the tub, and he did play for a little bit, then he wanted out. His hair did get washed, but brushing his teeth did not ---he was too tired. He went to sleep around 9pm, which is early for him, especially since he had a nap in the afternoon. This evening is the first time that I have seen his Mother crying. His weakened and declining condition finally became evident to her. He has had a temp over 100 off and on since Sat eve.

Sat July 10th.
Trever had a few coughing bouts thru the night, but nothing unusual, a drink of anything seems to quiet things down, and he goes back to sleep. This morning, Linda was off doing a show for TNI, and Trever slept until 9am. When he woke, he wanted to go downstairs and watch TV. After a while and a few pills, I asked Trev if he wanted to get a cinnamon roll, and that we could take the Prowler. He said OK, but wanted to wait until the Jimmy Neutron cartoon show was over. We went “Prowlin”, he had his cinnamon roll and I had my coffee. We went to Rite-Aid so Trev wanted to see what toys they had (Trev does not need anymore toys, but its great just to be with him, and he was in a really good mood). He found some scissors and a Crayola rainbow paint kit which we bought. We went to see if ‘Nickel-Nickel’ (an amusement center with electronic games much like Chuck-E-Cheese, but without Pizza) was open this early – 10am. It was closed and would not open for another hour. Trev wanted to go back to the house and watch cartoons with me and with him in my lap, ( we are doing a lot of this and it is really satisfying and gives us those quiet times in which we can hold and cuddle with him – even though the TV is on) which we did for a long while. Off and on today he said ‘I want you”, and we settled down on the couch with him in my lap and watched cartoons. This morning he had two bouts of coughing that were troublesome for him and he struggled to get breathing underway. It puts one in the worse possible helpless-panic mode. This ‘why am I so helpless’ feeling comes from knowing it is a call for help that cannot be delivered. We have been lucky so far in that he has been able to handle this situation and get air, which is helped by his having something to drink. So our new mode of operating is to always be close and have something for him to drink. At 3pm he finally agreed to go to Nickel-Nickel, where we spent $27.00 and an hour, winding up getting a ‘King and Knights Weapon Set”. Mike was on the end of a big kiss and hug because Trev said that this is what he ‘always wanted’ (he does this a lot especially when it comes to ‘weapons’). For $7.50 and the 350 tickets we had won playing some of the games, it was a great return for so little of an investment. As a condition of getting the weapon set, Trev had to ’pinky promise’ that he would eat and take his pills, so we went to Keno’s, a local coffee shop, where Trev agreed to have some chicken noodle soup (one of his favorites). We opened the ‘Weapon Set’, Trev showing everyone his new weapons. They all asked where he had been because with all of our traveling, we had been there for more than 3 months, and I said on vacation (they do not know his status as of yet). Trever had some soup and laid down in the booth and fell asleep (a deep sleep). While putting him into the truck, he woke up and asked if I had his weapons, I said yes they are in the front seat; he rolled over and went back into his deep sleep. After waking up, he was in a really good mood and watched some TV. His ex ‘nanny’, Gina came by, and we caught up on what happened during the past week. Trev decided that it was time that we had our sword fight using his new swords. After winning all of the fights, he and Nana decided to play poker. In trying to decide what to do for dinner, Trev said he wanted to go to the store and pick out some foods. During our ride to and back from the store he never stopped talking. It’s a great pleasure to listen to him, because he is so articulate and has a good command of the language. But! Since he has been awake from his nap, his cough has been more pronounced and occurs more often. After coming home he ate some spaghetti o’s, then decided they did not taste good with the milk he was drinking, and we switched to his favorite-Chinese chicken salad, which he did eat, but not as much as we would have liked. He is in bed, sleeping after a short story from Nana. Around 2:30 he woke up coughing, and he could not stop. Several minutes later his nose started bleeding-in, and the coughs were about 5 min apart. He has nose bleeds before and knows what to do, just ply him with Kleenex. After a while he looked up and said ‘this is the worst night of my life’. We just smiled at this, and of course are still crying inside, he was so dramatic in his pronouncement. This time his nosebleed was minor, and he soon mastered it. After a couple of large drinks of Tahitian Noni juice, he went back to sleep and slept until 10am, with no coughing.

July 9th…
We spent the Fourth Holiday at home. We will not be making any trips away from home for a while. Trever’s time was spent with all of his neighborhood friends and for the most part was AOK. He was made the Grand Marshall of the local bike parade and to lead the parade on his other Powerwheels Dirt Bike that he decorated with the help of Nana. The neighborhood gang went to a lot of effort in making this a special day for Trever, but it got messed up a little because he fell in the jumper and his sunglasses gave him a minor black eye, and then he just got into a ‘I’m doing it my way” and proceeded to mess up the afternoon, including not wanting to put on the special hat that was for this occasion. After so much, Nana dragged him back to the house and gave him a ‘time out’, until he could get under control and be nice. The rest of the day went just great and the local fireworks that we put on turned out AOK, with Trever enjoying everything. The neighborhood has really been great in supporting us and Trever, and all of his friends have been wonderful in coming over and playing with him.

We all went to see the movie Spiderman 2. When we were in Florida, we went to on the Spiderman ride at Universal Studios, and Trever got a Spiderman outfit.


Today, after Trever got up and settled in, he was not the same. He moped most of the day, coughed more than he has since the Florida trip, and started complaining about pains in the middle of his back, was very clingy and wanted to be held. It is one of our treasured things to do with Trever, under these conditions. There is nothing like the feeling one gets when he looks at you, says surprise, gives you a hug and a kiss and says ‘I love you”. The good news is that he has been doing that a lot lately, the bad news…???? He had some leftover pizza, pepperoni and pineapple, then he and Linda went upstairs to bed and she told him her normal, but new, bedtime story, and he went to sleep around 10:30. His breathing is not as easy as it should be, and one can tell that he struggles with this, though from his perspective everything is fine, he just isn’t as strong as he was, but that will be fixed once his ‘bad germs’ are gone. He knows that something is different about him, and Linda has told him that his ‘Purple Germs” have come back and that the pills that he takes are to help his soldiers fight those Purple Germs. For those that have not read the material on this website, I’ll explain. When he was first diagnosed with cancer, Kaiser had a pamphlet that described cancer treatments using cartoon characters…with the Purple Germs being the Cancer, and of course he would have soldiers with swords to fight those Purple Germs. This coming after having watched his favorite movie of ‘Peter Pan’ fit right into the use of this motif to describe all of what he needed to do to help fight off those germs; an example was the use of the central line so that we could give his soldiers more food.

June 29th.
On Sunday, Trever went with Tyler and Mike to Chuck-E-Cheese’s, and had a great time. When they came back, Trever introduced Tyler to all of his friends at the Highwood home, and they played for another couple of hours, having a great time. Linda fixed spaghetti for all of them, and then we went to 31 flavors for ice cream, and dropped off Tyler on the way back. Trever as he said ‘Had a really great day’. Mike said that his eyes really tell the story, and all day they sparkled and shone, even his not so good eye looked good all day. One of the rides at C-E-C’s was a wave runner, and Trev must have put a slug of coins into same, because each time Mike looked over at him he was smiling, a very happy boy, and when he went over to say hello, he asked him how it was going, Trev responding “GREAT”, and that he was winning.

On Monday, his other grandmother picked up around 10 and returned him after 8pm. They saw Shrek 2 (Trev for the 3rd time), went to Dave and Busters. After all of that, Trev went to sleep for a couple of hours. Around 9pm, Trev wanted to play his SpongeBob computer game, so Mike picked him up……and noticed that he was having some trouble breathing. He went to bed around 12 after watch Television with Nana, and Mike told a story about Dracula and Star Wars(Trever’s idea)….finally going to sleep, but most of the time his breathing was difficult.

Tues. Trever gets up around 8:30am and Nana gives him his normal load of pills, or tries to get him to take them…..and tries to get him to eat something. She has an appointment at 9am, so Pop takes over and fixes him a piece of pumpkin pie, and some Chinese Chicken salad, both of which he loves as his favorite food. He eats a few bites of pie, and a few bites of the salad. About 15 min later he is throwing up. He has been doing this for the past few days, first thing in the morning when he gets up, but today it was after he had eaten his very little amounts of food. It is now 2pm…and he has not yet eaten anything for today. He cannot even begin to fight without taking in some food. This comes and goes as a problem, but for the past 5 days he has eaten fairly well.

Thurs. Ivan Lezcano, a friend stopped by and brought Trev a large framed picture of Trever on his Harley motorcycle ….along with a remote controlled Dr. Suess car from Radio Shack….great gifts.Later on, his Aunt Brandie from NYC came by to visit and play with him. She is here for a week visiting especially to see Trev.

Sunday, June 27, 2004 5:15 AM CDT

There are times in one’s life that we all feel so hopeless. This has been such a time in our lives. One can give in to this hopelessness or make a decision to use it for spiritual and personal growth. Ever since we discovered that Trever’s cancer had returned, we have been on a mission of hope and discovery. Because of the aggressiveness of the cancer, we have been told that Trever may not make it through this summer. Our journey in search of alternatives to Western medicine has taken us down roads that we never considered traveling in the past. At first we felt hopeless and spent endless sleepless hours searching the internet, crying and praying for our precious Trever. We began to follow up leads from friends and information we found on the net hoping to find an alternative that would work some miracle for Trever. It may not be God’s will, or Trever’s own spiritual desire for him to remain here much longer, but that doesn’t mean our journey has been without reward. Prayers are not always answered as we hope them to be, but God in His infinite love and wisdom will bless us and take care of us in ways that we will see far into the future. He will give us all the strength and guidance we need and all the prayers that are being offered by so many for Trever are being answered in His way.

For the past several weeks we have been to Tucson and Phoenix twice. In Tucson, Trever gets to spend time with Renee and Dennis, gets to ride their horses, and enjoys their company. It is also true that we get to spend quality and uninterrupted time with Trever. Both trips were complemented by visits to alternative clinics and practioners in Phoenix looking at various alternatives and what the prognosis would be if we elected to undertake same. Trever has undergone several evaluations and we have been trying various herbs and homeopathic remedies, but as yet we are not seeing the hoped for reversal of the tumor growth. We are guarded about any treatment that would compromise the quality of his life without statistics that show promise of recovery. A 15% or less chance of recovery or possible extension of a few more months is not acceptable if it means he has to suffer daily from the treatments and the end result is pretty much the same. We are still searching and praying for Divine guidance and if God is willing, we will find that ever intangible miracle that will keep Trever with us. We are thankful that he has yet to endure any pain, and we pray that if it is his time to return to our Creator, Trever will be spared much suffering. His stamina is way down, and his coughing is increasing and causing more physical discomfort. When he plays, in a short time he has to stop and catch his breath. On Friday, he walked from our house down to the gate, and Mike had to pick him up and hold him as he was having difficulty catching his breath.

This morning, Jessie our UPS Delivery lady stopped by and brought Trever a stuffed Harley Davidson dog, which Trever promptly named Harley and a great Harley T shirt. She has a Harley motorcycle, as well as Trever’s Grampy Randy and Uncle Dennis. Trever has two electric powered motorcycles, a Police Harley Powerwheels and a dirt bike which he loves to ride.

When we were in Florida, Mike noticed that he looked sad. In asking him” was something wrong? Did he not feel good?”, he looked at Mike and said that he was ‘play sick’. Mike said ‘play sick’, what is that? To which he replied that he missed all of his friends and the times that he got to play with them. It made him sad to know that he would not be able to play with them until we were home again.

This afternoon, he went with his Nana (Linda) for a late lunch with his mother and a friend, and when they came back, he was almost asleep. Driving up to the house he could hear the kids in the neighborhood outside playing, he immediately recovered and wanted to go and play with them, his eyes lighting up at just the prospect of doing so. He entered his world of make believe and played for several hours. His friends had other things to do and places to go, so he came back, that sparkle in eyes now gone, to watch some TV and to play the new Sponge Bob PC computer game that he enjoys, and eventually fell asleep. This ‘spark of life’ response to being with his friends has been seen many times lately. A very enlightening phenomena of life; he needs the sleep so his body can repair itself, fight off as much as it can and recover strength and stamina needed for him to heal, yet his spirit needs the nourishment of being with his friends and gives him energy and a glow that we do not otherwise see. This further confirmed our stand regarding the importance of guarding his quality of life.

We mailed letters on Trever’s condition, along with pictures (much like those on this web site), to all of our friends, family and neighbors. In return, we have had an outpouring of love, caring and support, good wishes and hopes, offers of help in any and all ways, and of course the prayers that we all hope might influence the outcome, and or this journey.
We are very appreciative and thankful. He is a precious gift that we all treasure and love. He has a bright, adventurous and untamed spirit, undiminished by all that he has been through. If God is willing, we will find that Miracle. At the very least, we have been given a most perfect gift, Trever's Love. Through Trever we have been shown how to love and how to forgive one another. He has touched many in his short five years and we are so very thankful for the opportunity to share in his life and serve his needs. We are accepting of God’s plan for Trever, continuing our journey with hope and prayers for continued strength and guidance.

Mike and Linda

Monday, June 14, 2004 5:38 AM CDT

UPDATE SINCE JUNE 6, 2003 – and Some Very Sad News.
Trever made the So California Make-A-Wish Calendar for 2004. It is a great picture of Trever and makes us so proud when we see it.

Since our last update we have had some very rewarding times and experiences with Trever. Trever has been attending pre-school for 4 hours in the morning and has been progressing well. Make-A- Wish hosted Trever and a few of his friends at Medieval Times and it was a great hit (swords, jousting horses—right up Trever’s alley). Xmas was spent in Tucson with his Aunt Renee and Uncle Dennis. For his fifth birthday, he wanted to go to Medieval Times again, so a group of us attended and we had another wonderful experience. We spent 10 days in Hawaii on vacation with Trever at the Marriott Ko Olina in Oahu late March. Trever met some great pals, especially Nicolas from New Jersey. He had the one of his best times in Hawaii and his favorite activity was throwing spears at the Tahitian Village during our visit at the Polynesian Cultural Center (he spent over an hour And 45 minutes doing this). We spent some time with friends Randy and Donna visited a USS Bowfin(submarine)and the USS Carrier Midway. Trever has also been taking karate lessons from ATA Karate for Kids, which he really enjoys.

Because we had some expiring timeshare weeks, we decided to take an 18 day trip to Orlando including a 7 day cruise on the Disney Magic in May before school was out and it got hotter in Florida. After arriving in Florida and doing three days of touring, Trever started having a fever and a cough that finally was resolved after 5days. During this time Linda did a short trip to Provo UT and met up with her daughter, Renee, to attend Equine Essentials training for Tahitian Noni International, while Mike and Trever stayed inside at the Marriott Cypress Gardens Resort watching Cartoons, and comforting Trever. We did get to spend several days at Disney, Universal studios, a visit to Chic (Mike worked with Chic at Hughes Helicopters) and Pat in the Tampa area, and then on to the Disney cruise that took us to St Maarten, St Thomas and Disney’s private island, Castaway Cay in the Bahamas. We had quality, dedicated time with Trever and enjoyed doing all the things that these venues have for children. The best thing Trever liked was going to the arcade on the ship…little did we know or expect that this would be his favorite activity (for this we had to go to Florida ????).


While several days were consumed with getting Trever off of his fever and cough, it was and will be a treasured experience. We have come to the conclusion that Trever is the happiest when he is at home, in familiar surroundings and of course playing with all of his friends, who have been so important to him and his attitude about life.

Because of his fever and coughing (he still had a cough, but it was not as active as when it was with his fever), and was due for another CT scan, we did one on 5/25/04. The result of this showed a pleural-based soft tissue density over the posterolateral aspect of the right lower lung measuring approximately 5.5cm. This is a markedly large mass and was not good news. He was scheduled for a needle biopsy Thursday, June 3rd and it came back positive…a reoccurrence of Rhabdomyosarcoma, confirming our worst fears. Survival rates on secondary treatments for Rhabdomyosarcoma have extremely poor outcomes. This is compounded by the location of this tumor which precludes surgery and/or radiation to remove or shrink the tumor. Since he was treated very aggressively during his first bout with cancer, the use of chemo on his type of cancer has proven to be ineffective. We also had a PET scan which indicated his cancer has not metastasized yet beyond the lung.

After much agonizing and discussion we elected to take several courses of action. The first being looking at alternative and Natural Medicine solutions that deal with providing the body the tools needed for self-healing. On top of this we also decided to get as much information as possible and to obtain other opinions on cancer treatments. Our search for alternative solutions turned up a number of treatments & treatment centers, but sad to say the ones we looked at in the US so far do not hold much promise. We cannot say that these could not be beneficial for some cancers, especially for adults, but they are intrusive, requiring Trever to undergo IV (intravenous) treatments. The main hesitation is that we cannot find statistics to support success rates above 15% for his type of cancer. It requires protocols much the same as for chemo and he would again have to get a central line of some sort which he clearly demonstrates is stressful to him and his positive attitude on life would likely decline.

We have made the decision that his attitude and quality of life needs to be the best that we can provide in order for any treatment to be successful and/or to hold quality of life at its highest for whatever time he is to remain with us in accordance with God’s will. That he will rebel against prolonged invasive procedures comes from our past experiences with him. A current example of this was shown by his reactions on just having the biopsy done. It has taken 3 needle sticks to get a vein for the last 3 CT’s/blood draws and thus Trever is quite traumatized by even the thought of another needle. The biopsy could have been done by IV sedation vs. general anesthesia and started out to be this procedure, but when the anesthesiologist missed the first stick and the screaming started, he opted for the more intrusive general anesthesia which required putting him out with gas first, then the IV, more invasive drugs, intubation, and longer recovery time. The biopsy procedure only took 15 minutes and then we had to spend 4 hours in recovery. Coming out of the biopsy process Trever is covered up with heart monitoring leads (sensors) stuck all over him. Realizing this, he throws a tirade, saying ‘adults are not suppose to hurt children’ and ‘why did you bring me here….I don’t want to be here…”I will never, never let you do this to me AGAIN” etc. He disrupted the entire recovery room but finally settled down, and agreed to let them remove the heart monitoring contact patches, which again causes him pain as the adhesive leads are pulled off, so are the tiny blond hairs that were under the leads…wailing and tirading again about ‘child abuse’, and we came home with one still on! It took a week before he removed the band aid over the biopsy site. We had arrived at 6am in the morning after driving up from Orange County to Los Angeles and wound up leaving the hospital after 3pm, with Trever crying or mad most of the time…except when he was under or asleep. It was clear from this ordeal that he has had enough of invasive procedures.

This investigation into alternative medicine has taught us about another world that exists and the one on alternative medicine is huge. We have found several informative sites and one is www.minwelldir.org.

In our 2 and half years of limited exposure around Trever’s cancer treatment program we did not come across any child that survived secondary cancer treatments—and as the old saying goes, ‘if the cancer doesn’t get you, the treatment will’.

We started this journey with Trever having cancer knowing that we had risks…..and a possible doubtful outcome. We hoped and prayed for this journey to be successful and are still praying and looking for that ‘miracle’ that will keep our precious and loving Trever with us. We know that his life is in God’s hands and we are grateful for the treasured gift he has been and for all the love and teaching he has given us. We are still continuing to explore other avenues and to obtain additional information and treatment alternatives while we do all we can to make Trever’s life comfortable, happy and rewarding. We know if it is God’s will for him to remain here with us, we will find the right path. So far he is not very symptomatic. He does cough some, gets an occasional fever and his appetite is way off, causing him to lose weight. It is easy to see how cancer gets missed until it reaches later stages and you get caught in end stages.

Trever has certainly shown us how to enjoy life and look adversity in the face with a positive attitude. He loves his family, friends and activities, especially at times when he can learn about and experience weapons. Ever since his fascination with Peter Pan, sword fighting with Captain Hook, the movie 'A Knights Tale' and any movie of the era of medieval weaponry and tournaments, pirates,Star Wars and especially swords, weapons of any kind are on top of his interest list. He also enjoys karate and attends ATA Karate for Kids where he respects and admires his teacher, Master Yi, and the staff and friends he has met there. Because of the spirit he has shown in facing life’s challenges, Master Yi awarded Trever with an official Black Belt. The surprise and smile on Trever’s face when Master Yi and Mr. Woody gave him this award are priceless. He was very proud…and we are so very grateful…

Trever is still the same loving, caring, articulate, and playful child we all know and love. We have been blessed to have him with us. He has forever changed our lives and the lives of those around him. Those who get to meet know, talk, and play with him have all enjoyed this precious gift from God--our Trever. In our lives, this has and will be our most trying time. We thank all for caring, praying and supporting us as we deal with the realities of what we all are facing. We know God never gives us more than we can handle. We hope you will join us in continued prayer for strength and guidance and may God bless us all.

Mike and Linda

Saturday, June 7, 2003 0:19 AM CDT

UPDATE SINCE MARCH 2003.
Here is what has happened since our last update. First and most important, his eyesight has improved, and it has the last two times we have gone for his eye review. We are putting in drops often to keep his eye lubricated, and it has been helping. Dr. Mehta, his eye doctor wants to put a plug into his tear ducts to stop them from draining down, and to keep more moisture in his eye. Unfortunately, Trever has had a relentless cough for the past 4 weeks and we have postponed this operation twice now, but hopefully it will be completed by the end of the month. Trever had his Make-A-Wish program with Steve from Blues Clues, and it was a great success. Then we capped that off with a night at Medieval Times here in Orange County with Make-A Wish as well, and it also was really a great time, since he is really into swords and jousting (which we do almost nightly in our front entryway into the house).
His favorite movie so far has transitioned from Peter Pan to Knights TaleÂ….remember him knighting the Princes and Princesses while he was doing radiation???(see our other stories).
The next item is both sad, and a positive consequence. Trever's father, Vince, is not the best of persons. Early in April, he came by on a Saturday to play with Trever, taking him with his Kawasaki Dirt Bike to the top of our hill. Several hours later, we looked for them and could not find them. In looking for them, we came across some trail bike riders who said that the police had come by looking for a man and a boy, both naked who had been reported to the police by someone who had seen them in a wilderness area up from the house. We called the Anaheim Police Department, explained what we thought had happened, and asked for any news. They had said that they had found them, but had not yet had custody of them, and told us to wait at our house. Around 5pm up comes a police car into the driveway, with a neat officer-'Officer Dan', who had Trever wrapped in a 'space blanket' made out of aluminum foil. Trever was very marked with bruises, cuts and lacerations because of his hitting trees, brush, bushes, etc. He looked terrible and said as he came up with Officer DanÂ…'Hey Pop I can't play swordfight with you cause I don't feel good." We went to the Emergency care at Kaiser in Anaheim, where he was looked at and tested and most of the damage was superficial and just needed time to heal.
His father is in jail with nine counts including, felony child endangerment, and resisting and assaulting a police officer (it took 3 of them to get him under control). We have a restraining order out against the father. Trever understands that his father did a bad thing and that he is going to get a long 'timeout' in jail.
TREVER comes through this with the best attitude and though he still has his moments with the experience, so far its been handled. He is still the same loving, caring, articulate(for a 4year old) and playful child that has and will continue to bless and change our lives and those around him who get to meet, know, talk, play, enjoy the company of Trever.
Thanks for Caring Â…Â…
The Kelly's, Mike and LindaÂ….

Thursday, March 13, 2003 10:01 PM CST

UPDATE SINCE DECEMBER.
Trever is both a joy and a comfort. He is still recovering from his win over Cancer, and continues to make improvements. However, it appears that the nerves in his right eye have been impacted by the after affects of radiation. Over the past several months, his eyesight in this eye has been deteriorating. Time will tell if this will be a more serious problem that will lead to loss of vision in this eye. He had a great 4th birthday (March 4th), and still is opening presents. We are still very grateful to have him in our life and to experience the joy and pleasure that he brings to not only his immediate family but to all he comes in contact with.

Saturday, December 21, 2002 at 02:07 PM (CST)

Passed the second CatScan in December.
Yup, and he has a lot of hair (see his pics). He is a typical 3 year-old boy (guns, swords, scooters, and of course his Harley Davidson Police Motorcycle, handing out "tickets" to Pop for speeding on the scooter) that needs a lot of attention and someone to really play with (Pop just doesn't get all of his rules for the games). Nana has been giving him timeouts for his needed behavior moments, and he has finally gotten where he understands that he has to make the right choice to avoid them. His moments of anger and his mischievous behavior (like getting nude and covering himself with blue toothpaste) are lessening. He has really learned how to turn on the charm and it melts ones heart to hear him say "Nana come here I want to give you a hug". He made the front page of the Orange County Make A Wish campaign brochure, and it came out great.
We go into these next years with getting Trever back to some normalcy, and our lives into the new Kelly retirement program. This year has been one of caring and sharing and learning about things in life that are really important, and of course helping and being there for Trever during his treatment program.
We have all of you to thank for your generous love, support and the outpouring of prayers. God has truly answered those prayers and blessed our family with Trever. Our wish for this season is that all of you and your families have a joyous Christmas and a blessed New Year.

Thursday, October 31, 2002 at 05:46 PM (CST)

Its Holoween, and Trever will be either Captain Hook, Ninja Man, or Skull man......he is now just a normal 3 and a half year old boy. He made the Orange County Make-A-Wish 2003 Calendar. We spent over an hour at his photoshoot for this calendar, and were lucky enough to capture some of it on videotape (luck would have it -- started out late and then ran out of tape). For us going in to do the shoot, we thought it would only be 5min..what do we know....He put on such a show, that they kept shooting.
The CALENDAR can be ordered for $12 as follows:
Make-A-Wish Foundation of Orange County
14232 Red Hill Avenue
Tustin CA 92780
email: orangeco@wish.org.email
He has HAIR, finally and its growing every day......as well as eyelashes and eyebrows on his left eye, and some small hair growth on his right eye. He still tires easily, but we can see his strength growing. He is eating a lot, but not gaining much weight. So far he is in remission, and things look good. We are optomistic and are working towards getting him to be normal, with swimming lessons, and school to begin soon. He is defintely bored when he is a home and relies hevily on all of us to keep him entertained (sword fighting, baseball, hockey, skooters, etc)
and is is draining for us "older people", and leaves little time for much else. But he is a joy, and really knows how to push buttons, and does so often, such as "Nana I really love you", and 'Here are some Jackhammer Kisses' (puts his hand up to his mouth and rapidly throws kisses to you).
Thanks again to all of you for your support and caring in this past year and for all of our prayers going forward for a better next year.

Friday, October 04, 2002 at 07:15 PM (CDT)

Our LAST major step………SUCCESSFUL.
At 6AM this morning, we took Trever to the hospital to have his Broviac Catheter (central line) removed. Needless to say it was very successful and he was up and about in an hour (they sedated him for this procedure). He went off of the Nightly TPN feeding a week ago, and has been building up his appetite, but has not yet begin to put on weight (still weighs 27lbs). Some very small and very white hairs are starting to appear on his head. He still has a too strong affinity for Linda (Nana), and does not do well when she leaves him for whatever reason. He soon gets over this, but in the meantime he cries, and pleads ex: “pretty please Pop lets go find Nana”, and he always is nice about the request either saying “please” or the “pretty please”. It’s a tough one to handle as he asks it so convincingly, but it still gets him upset and he is generally that way for at least 15 minutes, or until he can be distracted to do something else.

We are now on the quarterly ‘keep your fingers crossed and the keep on praying program", and hopefully Trever will have permanently kicked this adventure with cancer.

We want to thank all of his donors, prayer line, supporters, friends, family and of course his Kaiser Medical team(s). And as the Cartoon show ‘Dora the Explorer’, says and sings “we did it, we did it”…(yes we are cartoon experts)…
THANKS>>>>
And of course give all your kids big hugs and kisses…..they are a precious treasure…

Friday, September 13, 2002 at 06:25 PM (CDT)

This week Trever had both an MRI and CatScan , and we have the results…..
HE's WON!
Looks like he has beaten those big bad purple germs (in the booklet handed out by Kaiser, it showed these big, bad purple germs that were being attacked by soldiers (medicines) with swords…..this helped Trever with positive imaging).
We will call next week to schedule surgery to have his central line removed.
He now goes on a 4-6 week recovery program, that will be directed towards building up his body and getting it accustomed to being chemo free, getting him get back to eating, and getting his body to adjust to being without treatments. He is also scheduled for physical therapy for his ankles and legs which have been affected somewhat by the vincristine chemo.
He will be checked every 3 months by CT scans to watch for any re-growth of the cancer, and will be checked weekly by the oncologist. Now we just pray that the cancer will stay in remission and we survive any negative affects of the radiation/chemo therapy (he's being followed closely by an eye specialist). He still has low blood counts and low platelets, so his legs are a bruised from the knees to the ankles, but he is happy and excited about getting his central line out soon. Then he can go in the spa again and get back to his swimming lessons! He wants to go to school, so we may start him two half days/week in October. He really misses playing with kids and we visited a school a couple of weeks ago so he's got his mind set on going there.

Tuesday, September 10, 2002 at 12:18 AM (CDT)

Trever had his last chemo treatment on Monday the 26th of August. That Friday, Trever went in the Clinic to have his blood checked, and it looked like he needed to have a transfusion, and platelet's (this has been a standard procedure ever since he completed radiation and was back on for the remaining chemo treatments). This was done, and on Wednesday he was put into the hospital with a fever of over 102 degrees. They had not been able to isolate his infection, so he is getting Tylenol, which has been good at bringing his temperature down, but when it wears off, his temperature comes right back and had gotten as high as 104. After Saturday it looked like his temperature had come down without any specific treatment. Linda has been a champ, and spent all of her time with Trever, with a little relief from his Mom to let Linda get a shower or for her to catch up on some of her activities. When he was getting 'hooked up' in the clinic on Wednesday, this was the first time that he adamantly refused to have the line connected, and really threw a fit over same. We got him distracted, and since then, he has been a really good soldier at minding his lines and connections. He came out of the Hospital on Sunday evening, after getting some more blood and platelet's, and was up and ready to go at it again, with the first thing after getting home was his asking Mike to swordfight with him, which lasted a good half hour. On Monday (Sep 9) he went in for his MRI and CATSCAN, and by the end of the week we should know where he stands on his treatment for his cancer, and hopefully the prognosis will be 'looks good, lets get rid of the central line, and get back to being a normal boy'. Already he has "peach fuzz' growing on his head, and when Mike said, Hey Trever, I feel peach fuzz on top your head, to which Trever said, "silly POP, that's hair". Stay Tuned…

Monday, September 02, 2002 at 10:18 PM (CDT)

Please See his New Pictures….
Trever had his LAST chemo treatment (we hope) on Monday 8/26 and so far with the exception of not being able to keep food down (it happens for the first 2-3 days after he has a chemo treatment) he is doing very well, smiles a lot, and gives lots of hugs. Of course HE IS A BOY, so this week he fell down at his mother's school, banged his arm and leg, and then while running hit has head on an object sticking out and put in a little gash, no blood, but it did give us a scare. His blood counts were low on Friday, and he has to go in on Tues (9/3) to have them checked again. We go in the following week for MRI and CAT scans.
SOME PICK-UP. Make-A-Wish Foundation had Trever on their watch list, and finally asked Trever what he would like, if he had a wish. He asked if he could go to the 'BLUES CLUES Birthday party and meet Steve'. Well, this finally did get scheduled and as it would happen, Trever had an infection that put him into the hospital when he was scheduled to go to LA for the party. His Make-A-Wish sponsors, Kristen Blake and Quinton Jones were great, in that they had our own 'Blues Clues Party' in his hospital room. The Kids at the Fairmont School, rooms 6, 8, and 9 had made up folders with their drawings and letters to Trever as a part of their effort in raising funds for Trever's wish (we thank all of you, it was a great treat and very heart warming).
In addition, Trever was asked by Make-A-Wish to come in to take some pictures for their 2003 calendar, and he has been selected for same. Of course he left there with lots of hugs, well wishes and presents.
He has been feeling good, and had a great day at Legoland on Sunday, with no nap. Aunt Renee came in from Tucson, and they had a great time together.

Sunday, August 25, 2002 at 05:24 PM (CDT)

Its been three weeks since Trever has had his major chemo treatment, and this time he has handled it very well.
The good news is that he goes into the hospital tomorrow to get his LAST major chemo treatment. He may get two more treatments of just one of the chemo's, but they want to wait to see how he handles monday. He will be in there for at least 48 hours, so they can keep him under observation, and isolated until his blood can rebound.
We are all very hopeful that he has kicked this and we can then proceed on with a normal life (normal for him, for us its just another kind of retirement program). He did a first the other night, we had some friends in from Florida and they came by to see Trever and to say hello. Trever was in his high-chair and as they came over he said "I have cancer, you want to see my central line". This was his first indication that he knows he has cancer, which was a suprise for us, as we have not told him that this is what he has. We painted the perimeter fence yesterday and today. Today he got a little wild, and Mike had asked him to only paint the fence, whereby he painted Mikes leg. Mike took away the paint brush, and he made a fuss over same, laying down in the grass and crying. In the middle of which he says "I'm having a bad day", and pouted off into the house. Out of the mouths of Babes, so the saying goes.
Have a great day, and we will keep this updated with his progress.

Wednesday, August 07, 2002 at 02:30 PM (PDT)

Trever was in the Hospital this Monday and Tuesday getting his triple dose of chemo. Within 48 hours after his 2 previous triple dose chemos, Trever was hospitalized to fight infections he contracted , probably caused by extremely low blood counts caused by the chemo treatments. Most likely because of the cumulative affect of the chemo and radiation thrapy treatments, he just couldn't bounce back as quickly any more. When he gets a temperature greater that 101degrees, he immediately gets admitted to the hospital where he is isolated,and is given blood and platelet transfusions, and IV antibiotic treatments as needed to fight the infections. He stays in the hospital until his temperature becomes normal and then is allowed to come home after 24 more hours. On the first of these excursions, he was in the hospital for 5 days, and finally released, but had to have what is called a CADD pump, which is aportable IV infusion device that dispenses the antibiotic on schedule. It is connected to his central line and the pump is placed in a canvas bag with a shoulder strap which comes in only one size...ADULT. When told that he had to have this with him at all times, he said,'OK, now I have a pack just like the soldiers have, you know....the ones with the bullets that come across your chest!' and off he went with it slung over his shoulder. The second occurance was about 2 weeks later, and he was again in the hospital, this time his temperature reached 104 degrees, and it took some time to isolate the bugs. He was in for 6 days and released with TWO of the CADD pumps(for getomiacin and timemten) and an oral antibiotic(vancomiacin). He could manage one himself, but two of them was a bit much, so in order to partioally solve this, we went to TOYSRUS and picked up a kids shopping cart, so he could put the two CADD pumps into the cart and wheel it around himself, to which he smilingly said OK. He found that the 2 pumps also fit neatly into the saddle bags of his battery powered Harley Davidson police motorcycle! For those of you who haven't seen this, he is an expert rider, especially in power boost mode , and it has been a Godsend, especially since he has leg weakness and fatigues so quickly.
Where do these children get the courage, stamina, and tenderness? How do they find such a positive attitude to meet their never ending challenges??!! We come in contact with quite a few children afflicted with Cancer, and most of them have these characteristics. HA...if only the world could get these "kids' solution"....what a difference it would make....
Barring any further complications, Trever is scheduled for his final triple chemo on August 21 and we are due for final evaluation on August 29th to hear what we know will be a successful outcome for Trever.
We wish too thank all of you for your continued love, support and prayers. Special thanks also to the blood and platelet donors....Trever has used all of your doanations and then some. Keep it up....we are almost there!
We hope you enjoy this web site. We just found out about it from Taylor's dad...Tay is Trever's friend at the clinic who is conquering leukemia and doing well.
God bless us all!

Tuesday, November 27, 2001 at 10:19 AM (PDT)

The Kelly's new retirement program:

In January of this year, Linda's youngest daughter, Randee, was involved in an accident that totaled the truck that she was driving, and put her into the hospital with major injuries to her head, and broken pelvis, clavicle, facial bones and ruptured spleen (she was alone in the truck in a rainstorm at night, did not have her seat belt on and lost control of the truck on a small curve in a street not too far from our house). They repaired her spleen, fixed the bones, however, she suffered a frontal lobe brain injury, which has left her brain injured (she was unconscious for 3 weeks). Since that time we have been taking care of her son, Trever, and when she was released from the hospital in March, she has been living with us. She is not yet at the stage where she can assume responsibility for her own life, let alone that of her son's. She currently is undergoing therapy and attending a special school for acquired brain injury. Because of this circumstance we asked the courts for guardianship of Trever and were granted same. He is a smart, aggressive and really lovable child (we were riding razor scooters at age 2 - he was two years old in Mar of 2001). Of course both of us have fallen in love with him, and have really appreciated the opportunity to get to know him, teach him and have him be a part of our life (for most of us that was something that we could not or did not do with our own children-too busy working-etc, but with both of us having the luxury to be retired, it was not what our retirement program was about, but its one that we now have and are making the very best of a different kind of an opportunity)

On the 3rd of Nov. Linda and Mike arrived back from a weeks vacation in Sydney Australia (Mike had gone there the week before on business) and that was a good 'get away' vacation week. However, after arriving back from Australia, we noticed that Trever's right eye was drooping. At that time he also had a cold, so we thought it was related. On the 5th we took him in to Kaiser to be looked at since he had a just completed a workup for unexplained bouts of vomiting prior to our vacation and we were to get the results. All blood, stool and urine tests came back AOK except for a slightly elevated SED rate, which was explainable from the current cold he had. We were to continue with the "cold" medicine and otherwise he appeared to be fine. He had no other physical symptoms…played as hard and long as ever. On the 14th we became concerned since he had sort of kicked the cold, but his eye was not getting better and he could still not breathe thru his right nostril. We figured it may be a sinus infection and he probably needed antibiotics. We took him into Kaiser on Thursday, the 16th at 3PM, and the pediatrician at that time felt that there was something else to his puffed eye, and scheduled him the next morning at 9am for a CT scan (we had to wait and not feed him anything for eight hours so that they could sedate him and give contrast). On Friday, the radiologist decided to do an MRI first. Trever was sedated and scan showed a tumor in his sinus cavities on the right, which were pressing on his right orbit. Immediately after the MRI he was taken to CT for a scan to determine whether any of the bony structures in the orbit were involved. After review of both of the scans, he was immediately sent up to an ENT specialist who went into his nose and cut out a piece of the tissue that he could see, and personally took the specimen over to the Pathology Laboratory to have it looked at and waited thru his lunch for the results (he also did not go to a scheduled meeting for this as well). The preliminary results came back positive for Rhabdomyosarcoma, which is a fast growing cancer related to soft muscle tissue (and confirmed in later testing). This cancer is found among all ages, but more prevalent in children. Its incident rate is 2 out of every 1M. The tumor appeared localized and had not penetrated the cranium, but they needed to do more tests to rule out metastases to any other area. Trever was admitted to Kaiser Anaheim hospital on Friday (its only 7 minutes from our house). A CT of the chest, abdomen and pelvis and a Nuclear Medicine bone scan were scheduled for the following day (Sat), and surgery was scheduled for Sunday at 3Pm. On Sat they confirmed that the cancer had not spread-good news. On Sunday they did another cut of the cancer thru the nose (they needed more and bigger samples), took bone marrow from his pelvis area, and inserted a broviac catheter (central line) with double lumen (Splits to two lines) in his chest that will be used to give him the Chemo that he will need, and to give and draw blood as needed during his long treatment. Thru this Trever has been a real trooper and of course said, "I not sick", (how does one explain to a 2 ½ year old what he has and what it means---you don't and just pray that this will just be one of those "bumps" in the road).

The treatment plan for this cancer is 12 weeks of Chemo (he gets 3 kinds), followed by radiation therapy at Kaiser in Los Angeles, then more Chemo to clean things up. Because of its location, they cannot do surgery to remove the tumor, as it would cause severe disfigurement. The entire treatment will take approximately one year or more, depending on how Trever responds, complications, etc. He gets the chemo treatment once a week, currently on Wednesdays and we will soon see the pattern of good days and bad days for him, which is typical of chemotherapy. After this we know he will be one of those who kick this thing and will then just get monitored for the rest of his long and healthy life.

ON Wed Nov 21st he was given his first does of radiation, and on Thurs, at 3pm we brought him home. There are daily injections and stuff we have to do in support of his central line and treatment, and it is not all easy yet, but we will get the swing of it soon. In the meantime Trever caught a head cold, which has made him more uncomfortable, though by Monday, this seems to be receding. It is now Tuesday and he is feeling pretty good…still not much of an appetite, but we're trying everything (he had spaghetti for breakfast again today and his only beverage so far is Cactus Cooler!). Tomorrow he gets his second dose of chemo, so we anticipate the first 48 hours will be the roughest.

Trever will participate in a study sponsored by the National Cancer Institute on treatment for Rhabdomyosarcoma covering the drugs Vineristine, Actinomycin-D, Cyclophosphamide, and Topotecan. Kaiser sent all of the diagnoses to CHOC of Los Angeles, and they confirmed the Rhabdomyosarcoma.

We wish to thank all of our family and friends for the huge outpouring of love, prayers and support. Judy Gillon and Frieda Holman have graciously cross- trained to help with Trever's care in case we get sick. The Home Health nurses from Kaiser have been wonderful, as were all of the medical staff at the hospital. We could not have gotten faster or better care anywhere. We needed 4-5 consistent blood donors for Trever, and were blessed to havbe a number of our friends volunteer for this effort We thank all of you for same who particpated in this effort for Terver.

In summary, our plates only get as full as we can handle. All is in God's hands as He works through us and through the doctors. We are learning a lot from each other and will continue on our journey with complete faith and trust in God and love for each other. God bless you all.

Monday, March 25, 2002 at 12:12 PM (PDT)

We have not done an update since the 5th of December, and have been asked a number of times about how Trever is doing. So this is an update through his 28 sessions of radiation. The good news is that he has been mastering the treatment, although he tires easily, and gets the "I not feel good" often. The effect of the radiation is that he has a radiation burn and a right eye area that is smaller. So far he can still see out of it. The cancer was in the sinus area around the right eye. The radiation does not differentiate between good cells and the cancer cells, so that all the cells in the radiated area have been affected. How the body reacts to this invasion varies and only time will allow us to see the impact. It is clear that he may have some disfigurement as the left side will grow and the radiated side may not or not as fast as the "T" cells promoting growth have been impacted. He will continue to undergo Chemo treatments up through the middle of September, though at a much reduced pace. We are very optimistic that he will beat this cancer.

The radiation treatment was given at a centralized facility for Southern California at Kaiser Sunset, which is located in Hollywood (or Hollyweird) CA. Kaiser provided a one bedroom, kitchenette apartment for us to stay during his 6 weeks of radiation treatment (our 'vacation' house). We went up Sunday evening and left after the Friday morning session. Being up in LA gave us the opportunity to hit the high spots (huh??), Griffith Park and Observatory, the El Capitan theater to see Peter Pan's Neverland, Universal Studios, and Universal Citywalk, the movie Beauty and the Beast at Universal's IMAX theatre, and of course the Lion King play at the Pantages. In addition there is a new shopping center, The Grove, that opened next to LA's Farmers Market that we managed to spend a few days just touring, eating, and shopping.

Trever's radiation treatment started at 8am each morning, where he was sedated, given his radiation (approx 2min), and put into recovery until his vitals showed that he could be released.
He was 'wobbly' each morning until about noon. Trever won the hearts of the radiation treatment team, from the receptionist at the front desk, the Dr's, the Techs and other patients (as he does with all that come in contact with him). Here are some of the stories. In being sedated, there were 5 needles that had something that he had to be given, and these were color-coded (SOP). Trever looked forward to getting his 'colored medicine', and this is how it went…he would be asked which line did he want to use (he has a Boivac catheter with two lumens that are used for everything-a white one and a red one) and his job was to keep straight which one to use as we used the other one at night to give him TPN, a nutritional supplement fed intravenously. Then he was to call out which color syringe to use next. He then injected the medicine himself (a first for the anesthesia team), with some going slowly and others he just zapped through. When we got to the last one which was the Versed , we would ask him if he was sleepy yet, and he always would smile and say 'not yet', then as he pushed in the Versed, he got woozy and sleepy and we would all say goodnight and off he went for his treatment.

Trever saw the Movie A 'Knights Tale', and from then on he wanted to make people Knights and Princess's. He made up his own ceremony and what to say. We bought him a Knights costume, and off he went to make the ladies Princess's and the DR's Knights. Needless to say it became the Buzz that played extremely well, and those that did not get their knighting could not wait until it happened, including the receptionist at the front desk, who was made the Yellow Princess (each Princess has a color). To become a princess you had to kneel, bow your head and Trever would take his sword and touch the top of the heads with his sword (Knights did the normal shoulder to shoulder thing), Trever would say that he has made them the "color" Princess or Knight and they could rise after he gave them a big hug and a kiss (Trever is the "Silver Knight").

The radiation team celebrated Trever's third birthday on March 4th with a cake, balloons, and gifts. He really was surprised and of course elated. Other patients in for treatment would go out of there way to say hi to Trever, and a number of them gave him gifts, money and of course a lot of prayers and love, which he dutifully returned with hugs and kisses, and even made a couple of them Princess's.

So we are back to our 'new retirement program' and some normalcy. Trever has gained some weight since he is being fed at night. Since he has been off of radiation we have seen his appetite pick up. Hopefully this will continue and we can get off the nightly feeding routine. So far we have been very lucky with no infections or complications.

He is cheerful, active little boy and very loving. He has become more reserved in his activities and is no longer as aggressive in playing as he used to be and tires very quickly, but his mind wants him to go on. At times he becomes angry and lashes out because he does not understand what is happening, especially when he wakes up and has trouble with his eyes. We get the TV on with Blues Clues and it focuses his attention to that instead of his anger and it works.

We are very appreciative and thank all of you who have been providing the thoughts, prayers, and all of the other things that made his life a little more easier. A special thanks to those of you who were gracious and lucky enough to be close and qualify to be donors for blood and platelets. We feel the warmth from the tremendous outpouring of love and prayers and we know it is helping him win this war. God Bless all of you.

Here is also an update on Trever's mother, Ralyn. She has been attending a school for the adult brain injured. It is helping her to learn how to cope and live a better life with her disability. In addition she has been seeing a therapist and is taking some medication, which has greatly helped her with her progress and outlook on life. She has set some objectives for herself in various areas. Her first goal was to take and pass her California drivers license test. She studied and took the written exam, which she passed the first time. She has been driving with Linda to get reacquainted with actual driving experience. In addition she and Trever are spending a lot more time together and have lots of quality time. She wants to get back into the swing of teaching him again, and helps with clean up and playtime, which are constant chores. He has received so many toys from all of you! Randee( Ralyn) stayed at the hospital overnight with Trever this past week and Linda got some sleep!

Tuesday, August 06, 2002 at 01:49 PM (CDT)

Trever is the hospital again for his major shot of Chemo.

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