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Wednesday, September 6, 2006 5:51 PM CDT

Hey to all,

Wow, we already have started our new school year. The kids are all back to school. Summer is over and this means its back to the "ol grind stone". So this last weekend (labor day weekend)Kris, Bryan and I went white water rafting (along with the Cakebread/Purdy families) and oh how much fun that was. Bryan, Kris and I have decided we had so much fun we will make this a yearly trip we all do. Krissy was so "brave" she did what they call "bull riding" while rafting. This is going up to the front of the raft, sitting on the edge while riding through some rough water and held on pretty good. She can't stop talking about how much fun that part was. I went to my Def Leopard/Journey concert last week and had a good time. Krissy also had a great time at both of her camps "Camp Reach for the Sky" in California and "Camp Erin" here in Oregon. She just loves to be able to meet other children her age and I think the part of "relating" with others is what draws her to these camps. Any parent that has a child who is dealing with situations such as what Krissy has to go through I urge you to contact support groups, they REALLY help.

Krissy started 10th grade today. She only has 3 school years left and then she'll be off to college....scary stuff. Oh where do the years/days/minutes go? I was a bit sad today for not only that reason but because I again am missing out on what would have been Ray's 5th grade year. Just very upsetting. I miss her so much. What would she have wanted to wear today...on her first day of school? Would she want to wear her hair up or down? Would she have taken a pink back pack or a blue pack...or maybe even a purse to school? She would have met new friends and had a lot to talk to me about when she got home and even some homework to have had some help with....but instead I get to sit here and journal....I am just sad. Very SAD!

Speaking of a lot to talk about...or should I say... lack there of. Kris had a good first day. All she had to say was she so far likes her teachers and classes, I am sure that will change as time moves along. Her feet hurt her from "walking so much" since she hasn't walked so much since our Relay 4 Life walk and her and Craig (her boyfriend of 10 months)don't have lunch together so she isn't very happy about that however she likes the fact that they are only a few doors down from each other during most of the classes. Apparently there's a football game coming up this Friday that she'd like to attend and a dance too. This is all I have been informed of at this point.

Relay 4 Life.....Team Ray-Jay raised a total of $7026. 83. That is $2026.83 OVER our team goal of $5000. WAY TO GO TEAM RAY-JAY!!! YOU ROCK!!!The walk was interesting. The best part of the relay was the luminary ceremony. The whole track was lined with luminaries in remembrance or support of someone who has been diagnosed with the ugly monster called "cancer". Needless to say we walked for 24 hours...cancer doesn't sleep so neither will we. In the end we were all TIRED! But the relay raised ALOT of money to help support the fight against cancer. Thank you...to not only the team members and captains but to all you who helped support our team efforts we couldn't have done it without everyone's efforts.

I missed the DPG Conference in Las Vegas(I was in New York for business so I had to miss it). The DPG Conference is for parents, grandparents, and siblings of children that have fought the DPG monster. I can't wait for the event to happen again so I can attend. I have read Rob's (Melody's dad)update and it sound like a wonderful experience. Please visit www.ourmelody.net and read up and follow some of the links for some interesting information. The Jeffery Thomas Hayden Foundation (http://www.jthf.org) will be introducing TumorTracker in just a few months. TumorTracker will be a place for parents and caregivers to input information about their journey. It is a valuable resource for families to learn all of the things we had to find out on our own, things the doctor never told us, either because they didn’t know or didn’t want to tell us. All personal information such as names, address, phone numbers will be kept private, however the medical information such as treatments, effectiveness, and comfort level will be available for others to see. Caregivers will then be able to print out reports and see what is working and what is not (the part above regarding tumor tracker has been copied from Rob's entry on ourmelody.net). I thought this was AWESOME news and had to share it. This"tumortracker" is something my close friends/family and myself have always talked about and not understood why such a thing wasn't in place. Knowledge is key to finding a cure...this will be ONE step closer to finding a cure in my book. This is really exciting...Way to go JTF Foundation.

Well I think I have written a small novel at this point. I just had a lot to get caught up on...I guess?

TAKE CARE,
Crystal


To "the prettiest girl in the whole wide world" I love you and miss you sooo much. I am sure you know to what extremes. Life without you here with us has been very difficult and experiencing new things without you being here to experience with us is depressing at times, but I do know that you are watching over us and are here with us spiritually. Your light continues to shine "Sunshine". You continue to teach and just as you always have you always know how to make ALL of us smile. We love you sweetie. Continue to watch over us...we all need it. HUGS AND KISSES...MUAHHHH!INFINITY PLUS INFINITY!!! Love Mommy

Tuesday, June 6, 2006 6:05 PM CDT

Hello Everyone,

I hope you all are prepared for this upcoming summer. As I mentioned in the previous update Bryan and I were going to be pretty much “kid free” this summer and I was wondering how I was going to deal with it. Well we have started out plans and the calendar is getting full, so I am well on my way to getting prepared. Bryan has a surprise trip planned for me on the 22nd – 25th of June (he won’t tell me where he’s taking me but maybe if I bat my eyes a bit more he will—hehehe) I got my Journey/Def Leopard Tickets and I am WAY EXCITED about these tickets….they are 2 of my favorite bands. I also will be going to New York for about 10 days in August for work which should be an adventure since I have never been anywhere other than the West coast. And then let’s not forget the ACS-RELAY FOR LIFE WALK on August 5 & 6.

Krissy will be leaving to visit her Dad and The California Crew on June 20th. She will be attending the SIBS camp (Camp Reach For the Sky) for a week and when she returns she will have a 3 day camp to attend for children who have had a death in their family, this camp is called Camp Erin. Her cousin Amber will attend with her too.

Krissy’s birthday was a big hit. Here is what we did. A few lovely friends of mine kidnapped 10 of Kirssy’s friends at 8:00 in the morning. None of them had a clue what was happening as I planned this with the parent’s knowledge ONLY. We went into their rooms (Krissy too) told them to get up and that we were kidnapping them , we took their pillow cases off their beds and put them over their heads and escorted them to the b-day “get-a-way” vehicles which were totally decked out in balloons, ribbons, b-day graffiti on the windows…ect. Once all girls were kidnapped we took them to Krissy’s b-day breakfast were they were given a special “Krissy b-day menu” to order from and before we left we sung-“Happy B-day to Kris” before unleashing them to the bathroom where they had 15min to get ready for the next part of the day (because all of them had to go to a restaurant in their pj’s and no makeup and messy bed hair---are we evil or what!! HEHEHE. Once 15min were up the girls were piled back into the vehicles and taken to the mall where they were given clues and riddles to find the location of 10 stores where Krissy could find her gifts (various gift cards). Once done at the mall we had lunch and ended up at Oaks Park (one of Oregon’s theme parks) where they were given an all day pass to do what they wished. Once the park closed at 7:00pm, we then all headed into the skating rink where we skated until 10:00pm and finally headed home to end the day at our home for a slumber party. When Kris got home she was told to go out to the backyard to be given her last surprise of the day…her new trampoline that she wanted REALLY bad…believe it or not…she chose a trampoline over a 4-wheeler…weird huh? So anyhow the kids (and adults) needless to say CRASHED hard once our heads hit the pillows, but we sure had a blast and best of all Kris said it goes in her book as one of the best birthdays yet…..BUT what do I do next year???? Well I have 11 months to figure it out.
I bet you all are wondering how the last fundraiser went….The garage sale went AWESOME. Sunday ended with a total amount raised of $886. This not only got us to our team goal of $5000 but took us OVER our goal. How great is that!!!!

Here is a look into our fundraisers and totals:

$1917 for our Spaghetti Dinner
$471.90 for the Can Drive
$885.81 for the Garage Sale
$1925 has been donated on our on-line as of 6/5/06
$190 was in general cash/checks donations

A GRAND TOTAL of $5389.71 raised as of 6/5/06!!!!!!!! We did it….team Ray-Jay has made our goal. We still have our HOPE bracelets to sale and of course we are always accepting general donations if you want to help raise money for the American Cancer Society, I am sure they can use any money they can get to fight that nasty Cancer Beast. We have plenty of the HOPE bracelets available for purchase so if you’re interested please email me so I can get one (or more) out to you.

In closure, I want to say to My Ray-Ray… “We did it baby, and I know you had something to do with how successful we were. I love you with all my heart and miss you sooo much. Make sure you keep a close eye on Sissy during her travels and make sure she gets back to me safe”. Thank you for all the reminders that continue to make me smile, laugh and cry.

“Love you forever and forever--- love you with all my heart---love you whenever we’re together---love you when we’re apart.”

Hug your children and remember to “Live, Love, and Laugh”.

Smiles to you all,

Crystal

Wednesday, May 10, 2006 1:06 PM CDT

Hello Everyone,

Time for another update.

Everything is going, well…. alright. There are a few fires burning here in the house but hopefully nothing that can’t be fixed. We only have a couple more weeks left of school and then summer is here. Kris will be going to California to visit her dad and the family, and to attend the Sibs camp she just loves to attend every summer. Bryan’s son will be going to visit his mom too. So, the house is going to be quiet; I am not going to know what to do with myself. I am sure I will figure it out as I did last summer.

Krissy’s 15th Birthday is on the 23rd…urrrgghhh!!! FIFTEEN? Anyhow (you really don’t want to know what I think about this), she will be going in to take her written DMV test to try for her “provisional license”. My kid will be driving…..oh my goodness! She is already studying the book. I have also been given the task from her to surprise her with her birthday celebration. So that being said, we have some pretty cool stuff in store for her (because she reads the updates…I can’t tell you but next update I will). I think this kid is SPOILED…but of course she thinks she’s not, but that’s a whole other story in itself.

Here is our Relay for Life updates:

Our can drive went wonderfully and was really fun. Again, thanks go out to all the team members who participated. Very special thanks go out to Container Recovery who counted all the cans and bottles for free. We are ecstatic to present that we collected:

5,996 Aluminum Cans

1,152 Glass Bottles

1,592 Plastic Containers

For a grand total of: $437.00!!!!

But, that is not all. We need to add the store cans and bottles. This brings the total raised from the can drive up to…..drum roll, please…..


$471.90!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With two fundraisers down, there is only one to go—The Garage Sale. Team Ray-Jay will be hosting a garage sale the first weekend in June, in the Multnomah Village/Vermont Hills area of Southwest Portland.

We are asking everyone on the team and anyone else who is interested in helping to set aside the items they would like to donate for the garage sale. Sometimes neighbors, family and friends have items they would like to get rid of, so it’s a good idea to give them the low down and see if they want to help. Contact the team captain of your choice to find out how/when to drop items off.

So far Team Ray-Jay has raised $4228:

Spaghetti Dinner: $1750
Can Drive: $437.00
Online Donations: $1875
Miscellaneous Donations: $75
Bracelets: $91

Which means we are only $772 away from our goal of $5000, I am so proud of the team and all those people who have helped us with the donations so that we are able to get to our goal. This is absolutely awesome. THANK YOU!

I will end with saying that the weather has been beautiful for the last few days and I really love it. The sun, the birds, the flowers…the beauty of it all reminds me every day of my Beautiful Ray of Sunshine. I am able to step outside, close my eyes, take a big breath of air, feel the heat of the sun caress me with the sounds of the birds chirping and I feel her--- see her. I miss her sooo much. I miss everything about her. She is on my mind and in my heart all day, everyday and with that feeling I know she is and will continue to be with me today and always.

To My Sunshine….(our song)

You are my Sunshine, my only sunshine. You make me happy when skies are grey, you’ll never know dear, how much I love you….please don’t take my sunshine away..

The other night, dear, As I lay sleeping I dreamed I held you in my arms. When I awoke, dear, I was mistaken And I hung my head and cried.

You are my sunshine, My only sunshine. You make me happy
When skies are grey. You'll never know, dear, How much I love you. Please don't take my sunshine away.. “

I love you Ray!

Take care all of you,
Crystal

Tuesday, April 4, 2006 10:25 PM CDT

So I thought it was time for another update…once a month isn’t that bad, is it?

Kris and I are good. We have rejoined the weekly bereavement group for the next upcoming 8 weeks. Odd enough, after Kris originally fighting me “tooth and nail” to attend this group for those last 8 weeks, her and Amber were pretty much BEGGING to return. Funny part is, the group advisor pretty much assured me this would happen, and she was right. It ended up that I was the one not quite dealing with the class very well. Talking to others about your pain/loss/grief is hard enough, but having to see others deal with theirs is even harder Anyhow, Amy & I will return to the adult group and Amber & Kris will return to teen group. So hopefully we will all walk away with a bit of something learned this time around.

Kristina had a surprise visit from her dad this last weekend. She had a nice time with him. They spent the weekend in Medford where they went shopping, ate lots and watched movies. While she was visiting her dad, I decided to get a bit of much needed R&R by visiting the Salishan Spa & Golf Resort with Angie. Angie and I on Friday had the works done to us at the spa. Foot bath & massage, then a full body exfoliating body scrub, then an earth mud wrap, while wrapped a head massage and facial and then it ended with a massage. It was nice while it lasted.

Lets get you all caught up on the fundraiser. Team Ray-Jay’s Spaghetti dinner benefit was awesome. We had good food, a couple of wonderful speakers, some shared tears and laughs and we even had a magician who provided some really good entertainment. It turned out better than I had anticipated. We raised a total of $1760 toward our team goal. We have also had a pretty good response to the on-line donations page where we have to date raised a total of $1225. This month (APRIL) is our RECYCLE month. We are asking that all our friends and family collect your cans and bottles for the month and we will pick them up from you and exchange those unwanted recyclables in for cash which will be donated straight to our ACS team Ray-Jay’s Relay 4 Life goal. Our team will also be gathering together on April 22 to do a neighborhood walk to collect cans/bottles as well. Next month (MAY) is our Garage Sale month. Don’t throw those household items away during your Spring Cleaning; instead donate them to the team. We will be getting together a HUGE garage sale and need items to sale. We will pick up the items from you if you do not have storage for them. If you would like more info on how you can help the team, please email either Amy at cake4u@teleport.com or me at crystal2175@yahoo.com.

To my sunshine….I am still missing you with every inch of my being and loving you with all of my heart. Until we meet in heaven…

Hugs to you all,
Crystal

Friday, March 3, 2006

Well, I figure it's around the time for an update.

We are doing okay, I have been so busy getting our first ACS team fundraiser completed, and actually have had a blast coordinating the event. I think I may have found my new "passion", or shall we call it an "addiction"?

Kris has been so busy lately, between snowboarding, a snow mobile trip (courtesy of Candlelighters), school, helping me with the event, Winterhawk Hockey Games (courtesy of her cousins) and church she just has been booked. We have also started going to an 8 week course for group grief support. Although, I may think it’s a bit...lets just say...."WEIRD", I think Krissy is actually enjoying herself. She and her cousin Amber go to the "teen group" while Amy and I attend the "Adult Group".

Missing my Ray-Ray every single day and every minute/second of the day. I can't believe on March 8, it will be a whole year...365 days that she has physically not been here. I do feel her spirtually and I see things, hear things and remember LOTS of things that remind me of her all the time. Thinking of her puts a smile on my face and tears in my eyes. Participating in the Relay 4 Life has to be the best thing for me and couldn't have came at a better time.

To my sunshine-I love you infinity times infinity!(wink/wink).

My mom went in on Feb 27th to have a tumor removed from her adrenal gland, and seems to be recovering well except for signs of an infection on one of the incisions. Still waiting for final reports on what exactly it consisted of. Please make sure you pray for her.

Our 1st ACS team event---The Spaghetti Dinner Benefit is coming up on March 10 @6:30. We will be serving Spaghetti, Italian Salad, Garlic Bread and Beverages and have all kinds of neat Raffle Items that have been donated. To name just a few: Chartered Deep Sea Fishing Trip, Power Washers,DVD,Tool Kit,BBQ Sets, Blazer Tickets, Spa Gift Certificate,1 yr Banfield Wellness Plan for your Pet,Toys,Jewelery,and so MUCH more! An ACS representative will be coming in to speak as well. We are hoping for a great turnout...if you are interested in attending and need a ticket please email me so I can get you your ticket(s) at $5.00 each.

Our team website is up and running. If you are interested in donating to the team please visit the address below. You can from that page then find the team member you wish to donate towards and proceed from there. So far the team has received $750 in on-line donations. We are on our way to meeting our team goal of $5000...WOOOHOOOO!

(copy/paste the entire web address)
http://acs.kintera.org/faf/search/
searchTeamPart.asp?ievent=152516&lis
=0&kntae152516=72FCD2277D594183A3D558
0AFCAE3481&team=1230324

April's team event is "recycled can/bottle collection". So if you have any cans/bottles that you would like to donate to the team (and are local) please contact me and I will set up a time to pick them up from you. Or if your not local and want to help out, you can recycle your cans/bottles on your own and send a check payable to ACS (memo to read: 06 Relay 4 Life/Team Ray-Jay) to me. Again, email me for further directions, if needed.

Alright, I think this about covers it for now. Thank you for visiting the webpage and please remember to sign the guestbook so we know you came by.

Friday, December 16, 2005

Hi to all....

First I would like to wish you all a Happy New Year.

I write in efforts to recruit. Let me explain.

My mother A.K.A. "Nana" came to me a few weeks ago with a thought. She had heard from a co-worker about a relay which was put on by the American Cancer Society and insisted we needed to enter a team (OR MORE) into this walk. Without getting too far into her personal reasons as to why "WE HAVE TO DO THIS" she feels it will benefit ALL who knew Ray-Anne or even knew of her---who felt as helpless as we did in the fight to save her. Further, all money raised for this event will go to the American Cancer Society which is the world's largest & oldest voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer through research, education, advocacy, and service.

More money equals more research which could lead to more cures.

As you may already be aware, Cancer is not one disease. Cancer is over hundreds of different diseases, each with its own unique and complex characteristics. And while what makes news headlines are the many cases of cancer, or prominent people diagnosed with the disease, the fact is, today the survival rate for those diagnosed has risen to 62 percent. This is the result of sustained, comprehensive, multi-faced and well-funded public health programs done in conjunction with ACS, state and federally funded organizations like the National Cancer Institute, the National Institutes of Health & Centers for Disease Control & Prevention. Many breakthroughs have occurred at an accelerated pace recently. Childhood leukemia, for example, is now very curable, as are many forms of breast cancer. And the work of mapping the human genome, advances in biotechnology, and better detection techniques mean the future holds tremendous promise.

WE HAVE THE CHANCE TO HELP IN THIS PROGRESS. If we couldn't save Ray-Anne, we could be part of saving others in the future.

HERE IS WHERE YOU COME IN...WE NEED VOLUNTEER WALKERS, RUNNERS, SKIPPERS...OR EVEN FINANCIAL DONATIONS.

Event Information:

WHAT: Relay for life is the American Cancer Society's signature activity. It offers everyone in the community an opportunity to participate in the fight against cancer. Relay For Life represents the hope that those lost to cancer will never be forgotten, that those who face cancer will be supported and that one day cancer will be eliminated.

WHEN: Saturday, August 5th,10:00AM
through Sunday,August 6th,10:00AM

WHERE: Portland Christian School
12425 NE san Rafael Street
Portland, OR 97230-3960

HOW: Teams of 8-15 people camp out & take turns walking around the track overnight. Each team is asked to have a representative on the track at all times. Cancer survivors from the community are invited to participate in a very special victory lap on Saturday morning that will kick off the Relay For Life. The highlight of the evening is a candlelight luminaria ceremony to honor cancer survivors and remember those for whom the cure did not come soon enough. Participants will enjoy entertainment, food and cancer education throughout the Relay. Teams are also asked to raise $100-150 in personal sponsorship donation.

So you say well " I want to help, but I am not able to join you due to my geographical location" and I say to you, "Well my friend, you CAN help, you can help by sending a financial donation of any amount which will be used as a personal sponsorship donation that will help one of the team participants to get to their goal.

So then you may say, "but Crystal, I really do want to help but I currently am not in the financial position to send a donation nor am I able to be there because of my location” and my reply to you is "No fear my dear...you too can be involved in a relay with a team of your own, as the American Cancer Society holds relays across the USA and in 9 foreign countries. You can find more out by calling 1-800-ACS-2345 or visit them at www.cancer.org.".

If you would like to be part of the Relay for Ray-Anne team please send me an email or call me (for those who know my phone #) so I can add you to the list. Maybe we will get a big enough turnout so we can get 2 or even 3 teams going? Remember, the event is held in August so you have plenty of time to get yourself in shape or even schedule yourself to be in Portland for the event. I believe this event will be an unforgettable experience and hopefully it will be the first year of many that we build a team or even teams for that matter to walk this yearly relay.

If you are a business or know of a business who would be interested in a Sponsorship Opportunity please read info to follow:

Platinum Sponsor is $2000 and includes:
-Headlining logo with prominent placement on the event t-shirt
-Company rep speaks at opening or closing ceremony
- Large logo on event marketing material (brochure, poster, event program, etc.)
-Relay for Life “Proud Corporate Sponsor" banner provided by ACS
- 5 banners displayed on-site, day of event, provided by the company
- After 1st paid team registration, up to 3 registrations waived
- On-Site Thank You Plaque
- Opening/Closing ceremony recognition
- American Cancer Society rep will speak at company meeting about wellness programs and cancer prevention and awareness

GOLD SPONSOR IS $1000 AND INCLUDES:
-Large Logo on event T-shirt
- Medium logo on event marketing material (brochure, poster, event program, etc.)
-Relay for Life “Proud Corporate Sponsor" banner provided by ACS
- 3 banners displayed on-site, day of event, provided by the company
- After 1st paid team registration, up to 2 registrations waived
- On-Site Thank You certificate
- Opening/Closing ceremony recognition
- American Cancer Society rep will speak at company meeting about wellness programs and cancer prevention and awareness

SILVER SPONSOR IS $500 AND INCLUDES:
- Medium logo on event T-Shirt
- Small logo on event marketing material (brochure, poster, event program, etc.)
- 2 banners displayed on-site, day of event, provided by the company
- After 1st paid team registration, 1 team registrations waived
- On-Site Thank You Certificate
- Opening/Closing ceremony recognition

BRONZE SPONSOR IS $250 AND INCLUDES:
- Small logo on event T-Shirt
- Name Listed on event marketing material (brochure, poster, event program, etc.)
- 1 banner displayed on-site, day of event, provided by the company
- On-Site Thank You Certificate
- Opening/Closing ceremony recognition


To all of our family and friends. I thank you for your time and any and all help you can offer towards this event/cause. I hope to get a big response and will keep you all informed on the progress. I know Ray-Anne will be so happy to see us work towards getting a cure and saving a life. And not only will it put a smile on her face, but on all of us who will feel like we CAN help and there IS a reason.....LIFE!

Wishes for a great year to all,

Crystal

PS. Pass the information on to others. Word of mouth is the BEST form of advertisment. I want this to happen...in a big way!

Don't Forget To Sign The Guestbook TO Let Us Know You Came By!!!!!!!

Thursday, September 15, 2005 1:12 AM CDT

Hi All,

Another long break between entries.....but we are still here and doing okay. Times have been a bit hard lately...for me anyhow. Missing my baby fierce. I am having extreme problems dealing with not having her here. I want to hug her, kiss her, hold her, tuck her into bed, make her breakfast, pack her lunch, brush her hair....and the list will go on for days.

School time is pretty hard. I keep remembering our morning rituals during school time. Ray and I HATE mornings so Krissy would literally have to drag both of us from our beds EVERY morning. Ray would just FIGHT us every morning, no fail. I remember having to brush, braid or pig tail her hair in the morning as she always had her hair long and I hated it in her face. Ray could never keep her clothes clean because she was so active during school so any new school clothes would be ruined on the first time worn. I have to drive by the elementary school she would be attending every day and Krissy's soccer games are played on their soccer field and to be honest, it is just really hard to see all the little girls her age going to school- wearing their new backpacks, hair up in braids, playing on the playground and she is nowhere to be found.

I used to be able to get through each day remembering that Ray was ill and she is in a better place now. I used to always get memories of her during the time she was sick and almost forgot about Ray before the tumor. But lately, I can't remember her ill, I only get the memories of Ray before the tumor. This for some reason is making it alot harder for me to now deal with her being gone.

This last weekend, we went through Ray's room and packed it up. I had to make room for Bryan's son as he will be moving into the house here by month end. The process was difficult, the feeling that packing her stuff up was in a way packing her up was a HUGE issue for me. But, I overcame that by reminding myself over & over again that keeping everything will not bring her back. It gave me a false feeling to have her room in tact that one day she will return to her room and I realized this weekend she won't. That was a hard one for me to get through...but I did, am? I kept a few box full of her items and decided to give the other stuff to first the friends/cousins and any left over is being taken to Doernbecher's Hemog unit. By the way thank you GIRLS for all the help and support through that process.

Kris and I still visit Ray at her resting place, every Sunday. We continue to plant, plants in the area of the cemetery that we think should have foliage but that they (the keepers) feel that there shouldn't be any. So we took it upon ourselves to make sure it is done. We water them weekly which unfortunately isn't enough for this time of year, but never fear....the weather will be changing shortly. Her resting place is sooooo Ray-Anne. One day I will get the camera fixed and be able to post it so you can see the cute little items people have brought over the last few months for her. We still haven't done the landscaping I want to do....that will hopefully come shortly.

Krissy has started her 9th grade year. Already has a BOYFRIEND! She made it on to the Soccer team and the team is awesome. Krissy as always is a star....my star! She likes her classes so far. She got all the classes she was hoping for. With the combination of School & Soccer, she is keeping pretty busy. I drop her off at 7:00 in the morning and pick her up from practice at 6:00 p.m. So I am hoping that weekends will give us the time with each other we both need. But I also have to realize that her social life will be mixed into the weekends and I will have to share her time with her friends.

Ray has been posted on the Candle Lighters honor page. If you'd like to check it out or read up on other children listed on the honor page please go to:

http://www.4kidswithcancer.org/bereavement/bereavement.htm#article4


This weekend is the 9th annual "Cirque De Celebration" put on by Children's Cancer Association. I received a call from them today to see if I was planning on attending as they have a release of doves in honor of those children who have passed and they wanted Kristina to release a dove in honor of Ray-Anne. I am sure it will be a very emotional day. Krissy isn't sure he will be able to do it. Maybe by Saturday she will have it in her to do so?

Well its very late...or early (however you see it) and I need to try to get some shut eye. You all take care and I want to thank you all for the prayers and continued support.

One last thing....To Amber-Kaidrie's Mom (or whatever your real name is) if you are reading this....SHAME ON YOU! I just got word of your fake daughter, with her fake tumor and your fake emotions.The only thing good about this is there is one less child diagnosed with the tumor. You are a horrible person! It's one thing to take money/donations from others but to screw with peoples emotions who have unfortunate circumstances thrown in their life....DESPICABLE! You deserve everything coming your way.

Crystal

Friday, June 17, 2005 4:05 PM CDT

Hi to all,

Yes I know, it’s about time. Please understand that it is very difficult to update this page since our Ray of Sunshine has passed. June 9 marked 3 long months since I last was able to hold my daughter…it seems like eternity. I miss her so!

Kris and I are doing alright. Each day is a new day and is handled in its own way. We miss her every minute and it sure does not get better to handle with time. This feeling or shall I say THESE feelings or lack there of will never go away nor will it get better. So to those who told me it will get better, give it time…you are wrong!

Kris and I visit Ray’s burial spot every Sunday. We plan on making it a beautiful spot for us to visit and for Ray to rest. The headstone was just delivered a few weekends ago so know the master plan has to come to a head. With the help of Angie, Amy Kris and I, we plan to make Ray’s resting place a magnificent place to rest.

Ray’s last school she attended North Broadway Elementary made a Memorial in the schools garden for Ray-Anne. I unfortunately wasn’t able to attend, but Jason was and he said it was very nice. Jason is supposed to be sending me pictures so as soon as I get those I will post them on the website. “Thank you” to all at North Broadway Elementary, this means a lot to us and I am sure Ray is smiling down on you.

Kris graduated 8th grade on June 15th. I just can’t believe that my baby is moving into HIGHSCHOOL! URGH! So I have only a few more days with her, until she is gone for 8 weeks to California with her dad. I am having a hard time with this. But this is also something I will have to deal with. She will have a blast though. She will be going to Camp Reach for the Sky a SIBS camp put on by the American Cancer Society for siblings of siblings who have been affected by cancer for a week. She also will be attending a family reunion, and visiting family and friends whom she has been so excited about. If you’re in California and want to spend some time with Kris you better get a hold of Jason to get figured into her time out there. Time is precious.

Well that is all for now. Please remember ALL of our Caringbridge buddies. There are some buddies who need your prayers and others whose families need to be prayed for, as they really miss there little Angels.

To my Dear Ray,
Thank you for your frequent visits in my dreams and all the other ways too. I miss you Sunshine and I can not wait for the day I am able to hold you again and can feel your wonderful presence. Who’s the prettiest girl in the whole wide world? Mommy loves you!

The Copeland Girls

Saturday, March 26, 2005 2:39 AM CST

So I sit here trying to an update and have honestly been struggling. I don't know what to write. My updates before revolved around Ray and how she was doing, feeling...what she was eating, what her week was like, what things that horrible tumor was doing to her and taking from her. Now I have nothing to write about.

I know that my Sunshine is in a better place, tumor free and living life like she should have been for the past year. So now this page turns from being Ray's page to an update on how the tumor took one of the most precious things from our lives and the aftermath of it. This really sucks.

I never new how empty I could feel until the day I held my baby as she took her last breath. You have no idea how badly I wanted to start mouth to mouth on her. Watching her leave and feeling her leave was just very unexplainable. I knew it was the best for her and she looked so "At Peace" but the motherly instinct kicked in along with panic. frustration, sadness and countless other feelings and OOOHHH how bad I wanted to breath for her. But I had to let her go. So freaking unfair.

I miss Ray-Anne with ALL I have. I make it day to day knowing that she is not suffering anymore. There would be no other way to be able to get through this without feeling the actual comfort that she is now happy and that we will be together again when my time is done here. I can't wait to see her again though. I want to see that very contagious smile, those eyes that say it all, her perfect little nose, smell her hair, feel her skin, wrap my arms around her and never let go. I feel I have so much more to do as a mother and wasn't able to complete my tasks for her. I will never understand why she is physically no longer here with us. NEVER!

Life without her is odd.I leave the house and feel an urgent need to have to get back to the house to take care of her. So leaving the house has become a struggle that I deal with. Waking up in the morning and realizing I will have to face another day without my baby is a challenge, but I do it. Walking out into the living room where she spent 80f her time in the recliner and seeing her not in her recliner is a huge battle, but I make it. Going into the bathroom and not seeing her toilet seat supports or her sitting on the toilet (as she spent 10f her time there) is a challenge but I get through that. Not hearing her talk and even the repetitive "I'M Hungry" cry's are missed, but I make it. Walking into her bedroom and not seeing her lying on the bed or toys moved or clothes worn, shoes scattered, socks lingering, bed crumpled...ALL A CHALLENGE, but somehow I make it through another day. I figured it out, SHE is the one helping me make it through each and every minute, and I know she will continue to help me through each day to come.

To all who were unable to make it to the services, to follow is a poem I found that stood out to me when I read it and felt exactly what Ray would be saying to us. I had this poem read during the services:

A 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 on 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.
I need you here badly, you're part of my plan.
There's so much that we have to do, to help our mortal man."

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 all those loving years,
because you are 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, unless there was some rain.

I wish that I could tell you all that God has planned.
But if I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is o'er.
I'm closer to you now, than I ever was before.

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 pain,
then you can say to God at night... "My day was not in vain."
And now I am contented.... that my life has been wothwhile,
Knowing as I passed along the way, I made somebody smile.

So if you meet somebody who is sad and feeling 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 you 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.

Speaking of the services, it was beautiful. I want to Thank all of you who worked so hard on getting every thing just right for what we thought would best suit our Ray of Sunshine. You all did a wonderful job and from the bottom of my heart THANK YOU!

And to all of you friends, family and internet friends/family I just can't explain to all of you how wonderful it has been to get so much love ad support during this past year and even now. I never, EVER would have understood the power that comes from even just a small message from someone to let me know you care and are praying about us until I was able to experience it myself. How wonderful to have such an outpour of tremendous love and support. Thank you, just isn't enough and I have no idea on how I could ever express to you all how much EVERYTHING from the messages, cards, gifts, donations, fund raisers, dinners, lunches, groceries, car, flowers, hugs, an ear, a shoulder...a punching bag...EVERYTHING meant to us!

Kristina is doing what seem to me very well! She has handled this whole journey extremely well and continues to do so. She went back to school the 2nd day after Ray had earned her wings...at her own request. I gave her the option to stay home and she insisted on going back to school. Not sure if this is normal...I quess there is no text book way on how children should/will handle a siblings death but I am starting my search to set her up for counseling. Even if she is handling the situation fine and not holding anything back from me, I think it will be good for her to talk to someone about this whole experience anyhow. I went to her Choir recital on the 16th...she had a "SOLO" and it went very well. The choir sounds great and my daughter sounds WONDERFUL. She is currently on Spring Break this week. We didn't do anything special, hopefully this is something I can make up to her sometime soon. Kris and I started a new tradition for Easter. We both are going to make a basket and donate them to a charity..most likely Childrens Cancer Association. Kris said she is too old for basket's and suggested we just take Ray's basket to her site for her on Easter Morning and make baskets for children who are sick and are in need for some cheer. We will be hosting Easter dinner at my house this year. So to all who read this and want to join...the invitation is open just email or call me so I can make a setting for you and your crew... We will be doing an Easter Egg Hunt (which includes the hunt for the Money Egg) and will end the day with Ham and trimmings (and maybe we can get a pudding fight somewhere in the middle...JUST KIDDIN).

Well, I am extremely tired so i will end this entry and hopefully will have it in me to update within a week.

Hugs,
The Copeland Girls

Thursday, March 10, 2005 12:15 AM CST

***UPDATE***

Services for Ray-Anne will be held Monday March 14th 11:00am at Greater Portland Baptist Church. A reception will be held immediately after the service. Ray will be laid to rest at Lincoln Memorial Park at Mount Scott.

Crystal would really like to see people wearing pastel colors instead the traditional black in rememberance of Ray-Anne's favorite colors of purple and pink.

If you would like to send flowers, we are using Van Kirk's Florist (503) 761-2662, but feel free to use a florist of your choice. However, the church will only accept flowers from 8:00am - 10:30am Monday March 14th so please advise your florist for delivery.

Donations and remeberances would be appreciated and can be sent to Crystal Copeland at:
Greater Portland Baptist Church
c/o Steve Gary
17800 S.E. Main St.
Portland, Or 97233.

Thank you all for your continued love and support.



Tuesday, March 8, 2005 11:57 PM CST

Surrounded by the enormous love of family and friends, Ray-Anne Copeland earned her wings at 7:27pm tonight. She fought this beast for 13 months with a true warrior's spirit and defeated it tonight with the grace of an angel. There are not words to tell you how much she will be missed.

Amy Cakebread writing for Crystal Copeland

Wednesday, March 9, 2005 11:51 PM CST

***UPDATE***

Services for Ray-Anne will be held Monday March 14th 11:00am at Greater Portland Baptist Church. A reception will be held immediately after the service. Ray will be laid to rest at Lincoln Memorial Park at Mount Scott.

If you would like to send flowers, we are using Van Kirk's Florist (503) 761-2662, but feel free to use a florist of your choice. However, the church will only accept flowers from 8:00am - 10:30am Monday March 14th so please advise your florist for delivery.

Donations and remeberances would be appreciated and can be sent to Crystal Copeland at:
Greater Portland Baptist Church
c/o Steve Gary
17800 S.E. Main St.
Portland, Or 97233.

Thank you all for your continued love and support.



Tuesday, March 8, 2005 11:57 PM CST

Surrounded by the enormous love of family and friends, Ray-Anne Copeland earned her wings at 7:27pm tonight. She fought this beast for 13 months with a true warrior's spirit and defeated it tonight with the grace of an angel. There are not words to tell you how much she will be missed.

Amy Cakebread writing for Crystal Copeland

Tuesday, March 8, 2005 11:57 PM CST

Surrounded by the enormous love of family and friends, Ray-Anne Copeland earned her wings at 7:27pm tonight. She fought this beast for 13 months with a true warrior's spirit and defeated it tonight with the grace of an angel. There are not words to tell you how much she will be missed.

Amy Cakebread

Monday, March 7, 2005 5:20 PM CST

Hi All,

It's Amy again.

I would like to start by saying a great big THANK YOU to everyone out there who is thinking and praying for Ray-Anne and her family. Thank you for your continued support and guestbook entries. They help us more than you could ever know. So, keep them coming. A special thank you to all of our caringbridge friends who have mentioned us in their journals. Thank you.

Ray-Anne continues to fight this beast. Thursday night she gave us a scare. She vomited and choked. Hospice came by--at 10:30pm, no less--and told us that Ray-Anne's journey is about to begin. Since then she has developed seizures and tremors, which today, hospice informed us this is evidence of active tumor growth. Also, Ray has developed a fever. None of this is good news but not unexpected.

Ray has had some visitors that she is excited about. Her Dad flew in on Friday and has been at her side cheering her up ever since. Angie also drove up Thursday night and brightened up her days by making her laugh. Nanna and Papa have been by to visit and sing to her along with her cousins Breeanna, Amber and Jordan. Devin and Jason Gump came by to bring the baby and visit. That baby is cute!! And, today, Nawny and Aunt Pooh are here to spread some more love.

Kristina is loving having her dad here. She is having fun with him at his hotel. I bet she goes nuts when she sees her Nawny and Aunt Pooh.

Crystal is always by Ray's side. Something you don't see in the journal is Crystal's determination and selfless giving. She tirelessly takes care of Ray and everyone. There is no one I am more proud of and in tremendous awe of than Crystal. It is important that everyone know her strength, devotion and endless love. So, Crystal, I want you and everyone out there to know that you are my hero and I love you.

It was crushing to hear that Melody passed. Please extend your condolences to Melody's family. Rob, Deb and Devin are in our thoughts constantly.

Well, I am going to get back to being with Ray. I find I have a hard time tearing myself away.

Pray for us,

Amy Cakebread

Sunday, February 27, 2005 2:05 AM CST

Quick Update: March 1, 2005

After having a very close call last night, I have decided to go with the option of the feeding tube. Ray was eating her nightly pudding last night and stopped breathing on me, she turned blue and her eyes went behind her head and frankly it scared the crap out of me. I realized then, that I would not be able to deal with loosing my baby by choking and would forever blame myself if she would have passed by choking and not by tumor related matters. Hospice is coming tomorrow afternoon to insert it. I am hoping she will be able to deal with the tube and not take it out on her own.

Jason is coming up on Friday. The girls are very excited.

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

Hi to all,

Unfortunately no good news to report.

On thursday I was visited by hospice and was hit with the news that Ray is probably not going to be here with us within a month. I am again going through the emotions and trying to deal with the news. See, I thought I was ready for this, but figured I am just not prepared...I tried fooling myself and was doing a pretty good job of it but the reality is, there just is no way of preparing or excepting that I will have to bury my child.

I was also told that there is a very good chance of her choking to death as well as just falling to sleep and not waking up. I pray with all my being that she be spared her last breath choking...what a horrible way to go. I am now finding myself watching her sleep and whispering to her that she can just keep sleeping. Begging her to sleep so she isn't taken from this world gasping for air. I am freaking scared!

Her diet at this point only consist of smashed bananas, applesauce, pudding, yogurt, oatmeal, and boost. they offered the feeding tube, but I declined. I just don't see that Ray would like that at all or that it would be comfortable either.

I am now sending this message to all friends and relatives who wish to see Ray-Anne before she leaves to start making arrangements for your visit and remember time is precious.

I have talked to Kristina and she took it pretty hard. I only hope that I will be able to be strong for her when she needs me. She is loosing her baby sister...her VERY best friend. To see those beautiful blue eyes fill up with so much emotion and questions asked with no way to answer just kills me.

I HATE THIS! I HATE THIS! I HATE THIS!

Ray is still fighting. My CHAMP! She gets frustrated and I can see when she looks at me with those wonderful still full of life hazel eyes that she has so much to say but just can't communicate. I wish I could read her mind. She sits there and just stares at me all day long, like she wants to tell me something but has no way of doing so. THIS JUST ISN"T FAIR!

Pray for my baby!

Crystal

Friday, February 18, 2005 1:09 AM CST

Hi To All,

Again, I realize it has been too long to wait for an update. Sorry.

Ray's Birthday went great. Her dream and all of the planning she did came together and we all had a whole BUNCH of fun. Everyone showed that was able to geographically. Wow we had alot of people here and everything went as planned. We had the Tigger jumper (a big hit), 2 birthday cakes and as planned went all over Ray's face (she loved that), we had 10 large pizza's and a whole bunch of soda to wash it down with, balloons, presents, a pinata (which she was able to join in on...with assistance) and the best part of the day was the jello and pudding fight we had at the end of the day. All of the kids and us few adults who dared to brave the utterly sticky mess, armed ourselves with different colored pudding and jello bowls and went all out FOOD FIGHT in the back yard. Lots of fun...VERY Messy...good ol' times, seriously. I have a BUNCH of pictures, just figuring a way to post them for all of your enjoyment....But Ray did have a great time. Thank you to all of you!

Well, some of you may have noticed that as of Feb. 9th Ray has battled this damn tumor for a whole year. Back in February the Dr.'s gave her 6-9 month's to live and here we are 12 months later. Man, my baby is a fighter. I am so proud of her. Going through all she has gone through and keeping strong just makes me the proudest Mom you will ever meet.

As for Ray's health, well not really good news to report. She is still sleeping alot and feeding her has become a problem. She is now not able to eat solid foods. I am having to puree all her foods now. She isn't liking this very much, but at this point I just have no other choice. At the same point, she can't swallow anything that is too thin or in a liquid state without choking or what ends up sounding like she is drowning in her own fluids. So feeding her has become a HUGE battle and a constant science. She is unable to drink from a regular cup, so we have been buying her sippie cups which seem to help her. Her right arm is no longer working and her left arm seems to be causing her problems as well and her legs are still not showing any signs of activity either. She is experiencing a major problem with hearing, she just can't hear at this point from either ear. So with the combination of the hearing problem and the previous problem of not being able to talk, communication is a HUGE problem and EXTREMELY FRUSTRATING for all involved. She has started a bad "habit" of pulling out her hair and scratching her face (leaving nail marks and sores) because of frustration. She is always bored, because she just is unable to do anything. She try's but she just can't use those hands. We try to play games with her, currently we play connect four and guess who but these only last long enough for her to get frustrated or BORED with the game. I will add to that, she is the CHAMP at the connect four game she beats pretty much everyone. A new thing I am having to help Ray with is clearing her nose and throat of secretions. She doesn't have the power in her to blow her nose or cough to produce the secretions out of her body. And because of her swallowing issues her food tends to linger through her nose and stick to areas of her throat and mouth that causes breathing issues.

We are trying to keep ALL spirits up in the house but to be honest with all of you it is extremely hard. This MONSTER drains every inch of every feeling you could possibly have in your mind, body and soul. Watching this thing take my child through this slow horrible form of torture is just unexplainable. It is unbearable to me that at this point, I actually have the tenacity to think "Please, Lord just take my child and spare her from this damn thing". This makes me feel ill to my stomach to even know I think this, but at the same time I know that where she is going is such a wonderful place. She won't have to battle this beast anymore and she will be able to run, jump, skip, play, brush her teeth, her hair, hug, swallow, chew, hear, sit on her own...and whatever else this beast has taken from her that she cry's she can't do now. The only things I am grateful for at this point is that she is spared physical pain and that I get one more day with her each day she wakes. I pray she continues to feel no pain. Please DO NOT get me wrong, I LOVE MY CHILD WITH ALL MY HEART and I love each day I am given with her but my love is so strong for her that I want only the best for her and I want her HAPPY AGAIN. Unfortunately, we know this is not something that we are going to be able to see her have in her "earthly lifetime" but I know once she is in Heaven she will be able to live her life as a child again.

I want to take a moment to THANK YOU ALL for the continued love and support you have given to us. Please continue to keep Ray in your prayers and to write in the guest-book, the entries are awesome.

To all of our caringbridge friends, I am making my very overdue visits slowly but surely and continue to keep you all in my thoughts and prayers daily. Be strong!

Hugs & Kisses,
The Copeland Girls

Friday, January 28, 2005 4:34 PM CST

Ray-Anne has sent a letter to her brain tumor ( I of course typed it for her)...I thought I would share with you all. Her health and spirit remain the same, I will update next Thursday as I think all that needs to be said is right here in the words to follow:


Ray's Letter to The Brain Tumor
By: Ray-Anne Copeland
Typed By: Mommy
January 25, 2005


To My Brain Tumor;

I don't want you in my brain. You are weird, get out. I hate you, you bother me. You are extremely stupid. How come you make me pick my nose? This really is annoying to me and everyone who is around me.
Could you please tell me how to get rid of you. I want you to leave so I can hear again. I would like to be able to drink and eat normal again without choking. You have made it so I can't walk and that makes me very mad at you. You being there in MY brain makes my arms and hands weak too, I can't even write or color or do legos without struggling very hard. I am bored all the time because you have made it so I can't go to school or even play with the kids anymore. I miss doing homework and playing outside. I would like to ride my bike and my scooter, but I can't because you are BAD and took that all away from me. I would like to play with Sia, Sissy, Anna, Jordan, Devin, Baily, Colleen, Abby, Hunter, Alec, Amber, Bree,Tigger, Colleen Hensley, Adam, Kai, Kassandra, Kayleigh, Kameron, Anthony (let's color on walls again) Mckenzie and Ian like we all used to be able to do together.. I would like to hold babies again, but you are still there making this impossible for me. You have made me feel like I am not a normal kid, and I will not ever forgive you.

YOU HAVE TAKEN THIS ALL AWAY FROM ME AND BECAUSE OF YOU I CAN"T DO ANYTHING!!!!!

GET OUT NOW!!!!!

Ray-Anne Copeland

Friday, January 21, 2005 1:50 AM CST

Hi,

Time for a quick update.

Ray's condition is currently the same as last update. No new news to update. Her spirit hasn't altered although she is showing a bit of anger and sadness (which I believe is VERY normal and oddly enough healthy). She does a lot of yelling at her "dang/stupid tumor" and repeats many times that "she didn't ask for the tumor, so why does she have it" and "how come no one else she knows has got it yet"...I let her express herself, comfort her, cry together, give her explanations (if any) and then we move on...until the next outburst.

Birthday Update:

We are busy chugging away at birthday arrangements. Ray has shown her true "female" characteristics and has made a slight change of plans. Now for those of you who are freaking out because you have purchased those Tigger items, don't worry the theme is still Tigger. We are just changing the location. Instead of it being at Chuck E Cheeses we are having it at home. Where we will be having a surprise visit from Tigger, the kids (even the kids young at heart) can entertain themselves by entering the Tigger bouncer (Ray requested the bouncer, so she can lay in it and the older kids can bounce around her which would make her somewhat of a bouncing bean), there will be lots of pizza and soda, and plenty of games and a WHOLE LOT OF FUN!

Upon the request of a few people I wanted to update a list of things that have already been purchased for Ray and the birthday, as so they won't be duplicated.

Gifts:

Tigger Slippers
Tigger Quilt
Tigger Movie
Tigger Stuffed Animal

These items are being purchased for the party, and I would like to thank you all for your help in making Ray's dream birthday party come true:

Tigger Ice Cream Cake-The Gump's
Cake to Smash Face in-The May's
Tigger Pinata/Candy-The Cakebread's
Papers/Plastics- The Cakebread's
Video Camera Loan-The Cakebread's
Balloons & Misc Snacks-The Gary's
Tigger Bouncer- Children's Cancer Association
Pizza- Children's Cancer Association
Tigger Costume-Children's Cancer Association

Thank You, Thank You, Thank You, Thank You...I just can't express myself enough to ALL of you....so Thank You!

Krissy is doing AWESOME. Very good in school -- she brought home her progress reports and she is an A student STILL. I am so very proud of her. She loves her sister so much. You should see the two of them interact. When Kris is at school, Ray watches the clock and when the clock strikes 3:00, boy, you better bet that she let's me know that it's time to go get her from school. The two of them together is just a WONDERFUL thing to see. I don't EVER want to see that end, EVER!

I will end this with the reminder to give your kids an extra hug and kiss tonight while tucking them into bed and to remind you all to please put an extra prayer in for ALL who are sick.

I will update next week, so until then LIVE WELL & LOVE OFTEN!


Hugs & Kisses,
Crystal and The Girls

Wednesday, January 12, 2005 10:51 PM CST

Hello To All,

Update on 12/30/04

Well....Christmas has come and gone quicker than the anticipation of the day. We all had a very nice time. The Girls woke up at about 8:00am to pull me out of bed. They made out again this year in gifts. Papa, Nana, Aunt Kathy, and cousins came over to enjoy the rest of the Holiday with us. We cooked, exchanged gifts, played games, took pictures, danced and pretty much just had a really nice time...only to turn around and the day was over. By the way...MY DINNER (NOT TO BRAG NOR BOAST...HEHEHEHE) came out YUMMY! I think I have made my best Turkey yet....mmmm, mmmm, mmmm...good stuff!

This week the nurse came and made the comment that Ray seems to be doing better than she was 2 weeks ago. She isn't shaking as bad as she has in the past and she isn't as lethargic as she has ben in the past either. Ray continues to play her puzzles, string her noodles, play with lego's and even is feeding herself. This is all very exciting stuff for us. You know, the things all of us take for granted every day. Her spirit is also doing a lot better. I think maybe the Prozac she was prescribed is doing it's job. She hasn't made any negative comments about herself in a few weeks. This too is very exciting for us. Her weight seems to be climbing. Carrying her everyday, multiple times a day allows me to know her weight is climbing...wow my back definitely feels it.

OKAY...I originally started the update (see above) on 12/30/04 but somehow never finished it and decided with a bit of "persuasion" that I should finish the update for you all.

So lets see... where did I leave off and what has changed from the update in December to now?

Ray seems to be making slight changes "for the worse" symptoms include:

-Choking more frequent
-Problems with urinary/bowel movements...she feels she has to go but can't make the feeling become a fact most times
-Shaking more
-Eyes crossing more
-Naps (Dr. told us to watch for her becoming more sleepy, she hasn't been one for naps and all of a sudden is starting to nap DAILY)

The Hospice nurse came out today, all vitals are good but he also noticed the eye issue and the shaking.We are in the process of trying to get her on a liguid/pudding diet. I couldn't bare the thought of her choking on something and for some reason not being able to dislodge it as I have to do multiple times in a day currently. If you don't know, Boost (the food alternative) is VERY spendy. You get six bottle (each bottle is a meal supplement) for average of $9.00. If you do the math, you could see it could get QUITE spendy, so we are in the process of trying to get it covered by insurance....YEP THE FUN GAME OF APPROVAL WITH THE INSURANCE COMPANY ONCE AGAIN!!! Ray is still dependent on us for transportation from one spot to the other. The recliner is her favorite spot. She doesn't sleep well, because she can't turn herself, so I am up during all hours of the night with her to try and help her find comfortable positions to sleep in. Her speech seems to be the same... pretty much only Kristina (sissy) and I are the only ones who can understand her words...everyone else need us to translate. Good news though, her spirits remain HIGH. We haven't heard those negative words she used to have for herself in a long time now and her laughter fills the room daily.

Now for the FUN STUFF:

Ray wanted me to let EVERYONE know her plans for her birthday. She talks about and plans her b-day every hour of every day...pretty cute I think. So as I promised my Sunshine, here is the info she has planned SO FAR:

FIRST...EVERYONE is Invited

Theme: Tigger Party
Where: Chuck E Cheese's
When: Sunday the 30th of January

This is what she has requested:

-2 Cakes (one to SMASH her face in, and the other one an ice cream cake to EAT)
-She doesn't care if she can't play on the toys or the games, she just wants to be the one to count the coins for all of the kids who attend
-Lots of Balloons
-EVERYONE INCLUDING ADULTS MUST WHERE PARTY HATS...YES EVEN YOU....
-Lots of People
-She wants to give Tigger a Big Hug & Kiss (If anyone knows a where to find Tigger PLEASE let me know)
-She wants Tigger bed sheets, Tigger slippers, Tigger Jammies, Tigger clothes, Tigger lamp, Tigger watch, Tigger ring, Toys R US & Disney gift certficates...I THINK I NAMED IT ALL?????

Hopefully we will see some if not ALL of you there?

Oh, we went to The May's house this past weekend and it SNOWED. It snowed enough for us to get Ray out in her Wheelchair and allow her to do her favorite snow activity...CATCHING SNOW FLAKES IN HER MOUTH. It was so much fun to see her doing that and to see all the kids of the house having fun running around playing in it and having snow ball fights. What a nice time we had.

Rays fun she likes to do in a day continues to be playing with her bugs, puzzle's (she received as a gift from the Cakebreads), foam beading (she received as a Gift from the May's), Lego building, and making Birthday plans...LOL! We don't get out much as it is pretty difficult for me to transport Ray and Ray just doesn't enjoy it outside of the house anymore so we have to make the best of life in the house.

I love my bundle of Sunshine. I just want to let everyone know a few things. It never went through my mind that 8 days after my 29th birthday that I would have to deal with the thought of burying my own child...that is just not the way it is supposed to be, but the reality is, it happens more often than most of us want to realize. What I do realize is, that in my past I took my children's presence for granted. I have formed such a strong bond with my children (which i never had this strongly before February) and I am so thankful I was given the chance to form such a bond with the both of them. I am thankful that my child wasn't ripped out of my life without warning without the time I have been given with them with the knowledge that my beautiful Sunshine has taught me. Life has a new meaning now and I wanted to share that with you all. Yes, it is still hard and extremely painful and very scary to be dealing with what we have been dealing with BUT if I was given the choice of this journey or my child being ripped from my life without warning I would have to choose the "gift of time and quality".

Please ALL Parents reading this update remember life is short and it could be gone tomorrow. Enjoy your kids now! Come home on time tomorrow instead of working that extra overtime hour, play a game with your kids instead of watching that TV show, Read that bedtime story or sit on the bedside and ask how their day at school went NO MATTER HOW OLD/YOUNG they are, put down the dish rag and give your baby a hug or kiss....AND REALLY EMBRACE THE MOMENT AND DON'T POSTPONE IT UNTIL TOMORROW.

With all that said I will conclude this update with one last reminder to please continue to keep Ray and all of the children dealing with illness in your prayers. Please remember parents and family members that are living without their children tonight.

Thank you so much for your continued support, without support from you all this would be an impossible journey.

Hugs & Kisses,
Crystal

Saturday, December 18, 2004 6:01 PM CST

Hey All,

I know I have kept you all in an unfair suspense since the last update. Please know that I did not to this purposely. I just have been taking time out from the computer. I havebeen in my own little bubble and it just has just been way to hard to deal with so much emotion. Not only my own emotions but to read up on all the other families dealing with similar situations and the worst of it being that there are families having to be without their children during this time or for that matter, AT ALL. It just really hurts.

So, Ray is doing fine. She has not shown any deterioration (that I have noticed) . She wakes up some mornings and I even think to myself, "She is getting better". Her speech will improve some days, her overall body strength will seem better, her motor skills seem to improve...etc. So I just needed to remind myself after hearing what I heard from the Dr.'s a few weeks ago that the Dr.'s are just making å very VEIG projection. My daughter is alive now, and I need to not mourn her before she is gone. I need to remind myself to remember to appreciate each day we are all here.

I hope all of you are sitting down...Ray has put down the Gameboy. Yes, BELIEVE IT OR NOT! She has found a few new "fun" activities to enjoy. She is now beading colored noodles & cereal onto yarn to make jewelry (her Daddy was given the first finished masterpiece) and playing a "never ending puzzle" called beetle bugs. The name of the puzzle isn't that advertising...is it? The pieces are plastic bugs, 5 different styles and it takes patience to get these bugs to connect...but she does it and is enjoying them from sun up to sun down.

We have had a few visitors:

On December 3rd- Cousin Jeannie came up from California. We went to the movies and watched Polar Express, and stayed the whole day in the mall.
Our friend Mary and her lovely family also was able to swing in on the 3rd. We met them downtown and went to the Greek Cuisina...what great food.
On December 6th-Jason (Dad) and Marcie both made it up to Oregon from California. We all went to Kristina's Christmas Choir Recital. What a beautiful sound those kids can make. Kristina spent most of her non-school time with her Daddy. Marcie and I took Ray to the dentist on the 10th, where they PULLED her tooth that was bugging her. Wow, what a champ Ray was. She only had a few tears, I think Marcie and I had the most tears of all. Marcie left on the 11th and Jason decided to leave on the 14th. The girls are looking forward to his return for Ray's birthday...January 30th. My baby will be turning 9, where did all those years go?

One week left for Christmas, I hope all of you are ready. I will be hosting Christmas dinner at my house this year. Wish me luck.

Also, Ray-Anne had a gold ribbon in her honor put on the D.C. christmas tree by a very special friend of ours. I have attached the photo.

Tree DC 019


I have recently received an email from the American Brain Tumor Association that they have wristbands you can purchase to help spread awareness of Brain Tumors. Here is the caption from the website.

Brain Tumor Awareness Wristbands (Set of 5)
WE ARE TEMPORARILY SOLD OUT. YOUR WRISTBAND ORDER WILL BE SHIPPED BY MID-JANUARY. "Sharing Hope" is debossed on this handsome, soft silicone, light gray wristband. This color symbolizes gray matter of the brain. Raise awareness about brain tumors by wearing one. Minimum order is 5 wristbands/$10 (includes shipping and handling).

If you are interested in raising awareness about Brain Tumors please visit http://hope.abta.org/site/PageServer and click the Awareness Wristbands logo from the main page.


I again want to extend a HUGE THANK YOU to all of you for your continued support. Without support this horrible journey would be impossible.

Please keep Ray and all of the children in your prayers and thoughts. Please also remember those families that are dealing with lost family members and I would like to put a special request for prayers for my father whom was taken the the Emergency Room this morning due to diabetic sores on his feet that have infected.

Happy Holidays,
The Copeland Girls

Tuesday, December 14, 2004 0:59 AM CST

Quick Update

Sorry I haven't updated in awhile. Needed time to have a bit of headroom.

Ray is doing fine. No changes that I can notice.

Jason (Dad) is in town and our friend Marcie came to visit.

Since my visit to Doernbecher's we have seen a BIG change in Hospice, they even sent us a FEMALE nurse which made Ray's day.

Thank you all for your concerns and continued support. Ray and i also want to thank all of you for the wonderful gifts, cards and words of encouragement.

I will do another update on Friday.

Take Care,
The Copeland Girls

Wednesday, November 24, 2004 12:45 AM CST

Unfortunately I have bad news to report. The MRI scans came back and the tumor is growing in the right cerebellum. It has doubled in size since September. For a visual, it is now twice the size of a cherry. They also found on the scans a new area in the brain that can either be tumor growth or radiation effects (you mean to tell me they read brain scans on a daily basis for MANY years each and neither the radiologist nor the Dr. is able to tell the difference...go figure). They tell me that Ray's prognosis is not good at this point, they have given her anywhere from 2 weeks up to 3 months...really freakin shitty.

I don't feel like writing anymore today, I will try to update next week with hopefully a better attitude.

The Copeland Girls

Thursday, November 18, 2004 8:55 PM CST

Hi To All,

Things continue the same for Ray "health wise" currently. I am having a hard time keeping a positive outlook lately, but hopeful I will shake myself from the "funk" I am in. The "not knowing" weather or not Ray is having these effects due to radiation necrosis or if I am watching my child slowly leave me because the damn tumor may be growing is killing me, either way it seems to me both issues cause the same outlook. Would someone please wake me from this nightmare I have been in since February 9th!

We have the MRI scheduled for Friday the 19th @ 5:00 pm. Please keep Ray in your thoughts and prayers. I am so scared of the thought of hearing any bad news come from the scans. I will try to think positive but anyone that has unfortunately been in these UGLY shoes would hopefully understand the negativity. You can only pretend for so long that "EVERYTHING IS OKAY". We also have an appointment on Monday at 9:30-am at Doernbecher's to get checked.

Ray is currently signed up with Hospice and quite frankly, I am not thrilled with Hospice in Oregon. Once you have been spoiled from San Diego Hospice, i guess nothing will compare. Ray has been experiencing problems with pain in her chest, constant stomache pain and what Ray calls a "lion" in her chest (aka chest conjestion)as well. I have called Hospice on this 3 times. Each time instead of coming in a checking on her, they tell me to try some drug and call us if it gets worse. NO DAMN IT...I WANT SOMEONE HERE TO CHECK MY CHILD OUT BEFORE IT GETS WORSE, AND MAKE SURE SHE IS OKAY AND THAT IT DOESN'T GET WORSE! Is there a problem HERE? I never get a scheduled visit from them. They call when they will "BE IN THE AREA"...yeah like that works. They aren't the only people with things to do in a day, oh and the prescriptions used to be delivered to me ASAP from San Diego Hospice, out here, I wait for FEDEX to deliver which can take 3-5 days. I can go on about this but I am sure you all are tired of reading me Bitch about a service or what i feel is a lack of service. Anyways, when I called Doernbecher's they agreed I needed to bring Ray into the office (probably to make sure I don't pull a head off of the next person that walks in from hospice).

Another child has unfortunately been taken by a brain tumor. Olivia earned her "Angel Wings" this morning after putting up a good fight to the beast. Please stop by her website and show your support during her family's time of loss.

http://www2.caringbridge.org/mi/oliviasgrace/index.htm



***GOOD NEWS***

We had our visitors up from California this last week and we were sad to see them go. My, how my nieces and nephew have grown in just the few months I haven't seen them...not to mention they are all cuter than ever. The girls and I had a very nice time with the whole group of them. We can't wait till we can do it all over again. Thank you Wendy, Jackie and Kids! You are already missed. Oh and Wendy don't forget to send those pictures up to me, I would love to post them on the site for everyone to enjoy.

We have finally had the chance to meet Faith RayAnne Gump. What a little (and I mean little) precious peanut. Those Gumps really know how to put out cute kids, now we sit and wait for child number 2...hehehe...just kiddin Devin and Jason! All Ray did why we were visiting was giggle, she couldn't get over how little Faith is. She absolutely fell in love with her, so did Kris and I, how could you not fall in love with her, she is beautiful. We have posted a picture of Ray and Faith on the site so don't forget to check out the picture.

Amy came over as planned on Friday and the girls had a grand ol' time. I just got word last night that Amy plans to do it again this Friday. So once I let the kids know, it's going to be all smiles from that point until Amy shows.

Our buddy Marcie is coming up on the 27th of November to visit us. She unfortunately won't be bringing the boys with her, but we will be happy with the fact that we will be able to see her, it seems like it has been forever. The girls and I are excited for her arrival. Marcie remember to PACK WARM CLOTHES, IF YOU HAVE ANY...HEHE!

We hope all of you have an AMAZING Thanksgiving Holiday. Stuff you face with lots of Turkey and all the fixings. Just think, Christmas is just around the corner...

Please take a minute to sign Ray's guest-book we really love to read the messages.

I would also again like to THANK all of you, from the bottom of my heart for EVERY bit of support you all have and continue to show. Without support, I don't know how we could have made it this far. Please remember Ray and all other cancer patients in your thoughts and prayers.

Big Hugs,
The Copeland Girls

Monday, November 8, 2004 12:19 AM CST

Another week has already flew by. Where does time go?

Ray is still feeling the same. Even though she is pretty much "couch bound" she finds ways to keep herself entertained. THANK GOD for Gameboys, she is hooked on hers. So for those that have been asking if Ray needs anything or if they could send her anything... I have figured it out, Games for her Gameboy Advance would be much appreciated. She currently has the following games: Snood, Mario Bros, Shark Tales, and Barbie Games.

This week was a fun week for her. On Thursday Ray and I ran errands together...it was nice to have her out of the house and for her to be enjoying herself. Thursday evening The Cakebread Family came over and we had a "hands down" bellyaching good ol' time. Amy made about 10 bowls of pudding...each a different color. The objective of the pudding was to get into bathing suits and have the kids use their bodies as canvases to paint with pudding. BUT, that didn't happen. What ended up happening is a PUDDING FIGHT in the kitchen. Thank GOD for tarps. The tarps covered the floor, but the walls and ceiling weren't spared from the attack. I don't mind clean up, especially when you get to hear the laughs and see the HUGE smiles radiating from all the kids (The Pictures will be scanned soon for your enjoyment). Saturday we went to the mall. Ray had received a card with a gift inside which had direction on how the gift was supposed to used. So Kris, Ray and I went to the mall. The first stop was the "Build-a-bear" Workshop. That is a cool place. If you haven't been to one of these stores, you need to find one. The kids picked the "skin" of the type of animal they wanted to make. Ray chose a dog and Kris chose a monkey. Then they picked a heart for the animal, took the body and heart to the stuffing machine, where there they were able to help fill their animal with stuffing then were asked to make a wish while holding the heart they had picked and then placed the heart into the animal. The animal is then sewed up. Then they took their animals to the animal wash where it gets brushed and groomed. Next stop is the "accessories". Now let me tell you, these animals have a variety of very cool clothes, hats, shoes, purses, scarfs...the list goes on. But thank goodness for the sake of the pocket book, they both thought it was odd to have clothes on animals. The only accessory I ended up having to purchase was a Pink Collar and Pink leash for Ray's dog. Once, we made it through the maze of clothing we were then set up with a computer to scan the animals into the system and then a Birth Certificate was printed out for each animal. Once at the counter the animals were put into their own "Animal Condominium" and we were on our way back out into the mall.

On Sunday, Ray went to Nana & Papa's house to go to church. She had a good time, but ended up missing me REALLY bad. Kris and I joined a few friends for a drive out to the "BEACHES". We were asked along to go "four wheel-in". Kris had a BLAST! I wish we could have had Ray there but it would have just depressed her to have gone. Kris had so much fun though. I love to watch the "glow" of enjoyment on her face, she doesn't get out much to do the things she really enjoys so this was absolutely enjoyable for me to be a part of.

Friday, Ray was visited by both her PT (Larry) and her Social Worker (Doug). Larry brought Ray over her new exercise chair. Doug brought over his special game of Jenga. The game is pretty cool because every time Ray pulls a tile from the tower she has to read the caption on the tile and answer the question. The questions will hopefully allow her to express her feelings. Some of the questions are: I feel sad when..., I feel happy when..., I am most comfortable when..., When someone asks me about my tumor I feel..., etc. So hopefully he will be able to get her to open up? He had a problem with understanding her this week, so next week I will sit in on the visit.

I have more unfortunate news to have to write down. Not only did we loose Cheyenne to this disease last week, but we also lost friends: Troy and Conner. Again, I am heart broken and have no words to express my feelings at this point. Please visit their websites and let their families know that we are all out here supporting them through this time.

http://www.caringbridge.org/ny/troy

http://www.caringbridge.org/tn/connorhunley

http://www.caringbridge.org/tx/cheyenne5

**** GOOD NEWS FLASH****
Our very dear friends Jason & Devin Gump have a new addition to their family. On Friday at 9:12 a.m., they welcomed Faith Ray-Anne Gump into the world. Weighing only 5lbs 10oz, 18 1/2 inches long. I unfortunately haven't seen her yet but we are probably going over there tonight. CONGRATULATIONS JASON AND DEVIN, AND WELCOME TO THE WORLD BABY FAITH!!!

Aunt Wendy (Pooh), Aunt Jackie and the Berkes cousins are driving up from California this Thursday to come visit the girls. They will be in town until Wednesday the 17th. I can't wait to see my nieces and nephew and the girls are excited too.

Amy will be over Friday night for a "Sleep Over Movie Night" with the girls. She plans on ordering in Chinese Food, Renting Movies and making sure all the "necessities" for a movie night are in place. The girls are looking forward to this..including me.

We send a HUGE THANK YOU, to all of you for all of the wonderful support, gifts and cards. I am trying to get a moment to start sending out our "Thank You" cards but finding that time is far, few and in between at the moment. Hopefully time will soon allow.

Please continue to keep Ray and all the other Children and adults dealing with life threatening diseases in your thoughts and prayers.

Hugs,
The Copeland Girls

Monday, November 1, 2004 11:55 PM CST

I am saddened to have to write that our friend Cheyenne Fiveash (Link to her website is above) has earned her angel wings as of Saturday the 30th of October. Sweet Cheyenne, Thank you for being so strong, fighting so hard, and giving us all faith and hope. You have left an everlasting mark in our lives, and I am sure many other lives as well. You are a hero, mascot and teacher to us all.

Excuse me if I am at a loss for words this weeks update. I am just absolutely overwhelmed with this news. How can a child have to go through this? This damned MONSTER can just eat away at our innocent children and it seems NO MATTER how good of a fight they fight...it keeps winning. To be honest, I am losing faith with each and every child being taken by this disease. This just isn't fair. I am absolutely TERRIFIED for my baby.

Ray-Anne seems to be on a plateau . She continues to have very slurred and hard to understand vocabulary. She is wheelchair bound and has to be transported by the help of others to anywhere she wants/needs to go. She can't sit up on her own. It is getting harder for her to eat, I have had to dislodge food from her throat 3 times this week. Her breathing is sometimes "odd"and she continues to drool and of course her eyes are still crossed.

Her spirit seems to be the same as last week as well. She continues multiple times a day to express how frustrated she is that she can't walk, run,talk, eat...etc . Halloween night was a tough one for her ( and I) she was so looking forward to being able to get her own candy and was exercising her legs daily to make sure she was going to be able to, but unfortunately her legs just weren't ready. Although on a positive note, she hasn't made any comments about how she thinks she is ugly or stupid. We actually have made a song together which I sing to her every time I see the "depression" start to kick in. It goes WHO"S THE PRETTIEST PRINCESS IN THE WHOLE WIDE WORLD...and she answers "I AM", Then I sing "WHO HAS THE PRETTIEST SMILE IN THE WHOLE WIDE WORLD...and see answers " I DO", Then I sing WHO HAS THE PRETTIEST EYES IN THE WHOLE WIDE WORLD...she answer, "I DO" and then I sing WHO LOVES MOMMY MORE THAN THE WHOLE WIDE WORLD...and she says, "I DO". I know very amateur and rough but it seems to work and I always get that beautiful smile that I love to see so much of.

The kids enjoyed their visit with Jason and Nawny. They wish it was a longer visit, but they took what they got and enjoyed it. The weekend involved taking the girls to watch Shark Tales and did some shopping, eating and relaxation. The girls look forward to the next visit.

After the kids visited with their dad and Nawney, they were greeted by Angie, Cory and Bailey. The May's came out to Portland for the Halloween holiday and we all enjoyed ourselves trick or treating with the kids.

I want to thank every involved in AUDREY'S UMBRELLA for all of the wonderful cards being sent in for Ray-Anne. She is loving all of the mail coming in for her. It definitely puts a smile on her face.

I want to thank all of you for all of the continued support and prayers. Please remember to visit our friends websites and sign the guest-books to show your support during these troubled times.

Hugs,
The Copeland Girls

Thursday, October 21, 2004 10:30 PM CDT

Hi All,

Another emotional week for Ray (and mommy too). Ray is really down on herself, and unfortunately, I can't fix this either. She is constantly putting herself down, making comments like: "I hate myself, I hate my brain, I have a stupid brain, I'm ugly, My smile is ugly, my eyes are ugly, I am stupid, I can't do nothing for myself...and the list goes on. I try many different "uneducated" ways of dealing with this type of thing, and it seems to put a temporary band-aid on the moment but like I said, it is only temporary. WHAT DO I DO? Only if parenting...parenting an ill child for that matter, came with a book of directions.

On a positive note, Ray still hasn't had to take the Zofran to keep her from vomiting. That makes about 3 1/2 weeks of her doing it all on her own. She also has made a change this week in showing interest in having her homeschool teacher come visit (that puts a smile on my face).

She continues to take her Mannatech alternative 3 times a day and does it like a champ. She is so cute, she will remind me of when I need to give her her pudding. The Mannatech product and all other meds are mixed into chocolate pudding and she yums it up, sometimes I can't shovel it in fast enough. I wish you could see the aftermath of the "pudding feed" it is hysterical... Where is the camera when you need it? I really need to invest into a digital camera, the one we had is in California so I can't snap shots and download anymore. Hopefully you all are good with making your own visuals.

We will be headed to the pumpkin patch this Saturday. I figure this would be a fun excursion and a great chance to get Ray away from the house without her fighting me. Ray has decided on her Halloween costume, and believe it or not, she doesn't want to be a princess (Cinderella). She wants to be a black cat. Krissy STILL doesn't know what she wants to be. I guess at 13, you have to take a LOT of time to figure out if the costume you choose is going to be "COOL" or not. I have a feeling she will end up being a Punk Rock Chick or some type of dead prom queen or dead cheerleader...you know something that is not "girlish".

We had some visitors this week. My life long friend Jennifer and her two precious kids came in to town on Tuesday. It was a VERY short visit due to her having other family/friends to visit but I will take what I was given. As short as the visit was, the girls and I enjoyed the company and loved seeing them. Thanks Jen for stopping in and for all you do and have done. You are a sweetheart. Marcie was supposed to come visit this next week, but her trip will be postponed due to life and life's unexpected "pop-ups". Hopefully we will see her shortly. Jason and Nawnie (maybe Aunt Pooh too) will be her on the 27th til the 30th. the girls are looking forward to this visit. Ray mentions to me multiple times in a day "MY DADDY WILL BE HERE AT THE END OF THE MONTH". The May family will be coming up from Dorena on the 30th, to spend a few days and hopefully be able to "trick or treat" with us. Ray and Bailey are missing each other so much, Angie and I decided that we will TRY to get the girls together every other weekend. I love to let her know when people will be over to visit that she enjoys because not only do I get to see that beautiful smile of hers, but I also get to hear her talk about something she is anticipating and looking forward to.

Kristina had her progress report come in, and she is all A's and B's. She is doing AWESOME in school. I am going to try to get her into Basketball this season through the YMCA. I just received a flyer from the school, so I will call o see if I still have time to sign her up. She LOVES soccer and basketball and she definitely deserves to be able to do what she enjoys. She is always so worried about Ray and helps out so much, meanwhile keeps a smile on her face and doesn't ever ask for anything for herself . I want to be able to allow her to have that something for herself. So my next goal is to find something for Kris.

Well I am going to end this weeks update now, the girls should be home soon. They went to the Cakebread's house for a fun filled night. Amy came out and picked up Ray and then went to Krissy's school to pick her up. Amy has arranged for a weekly play date with the kids. Boy is she one determined woman. When she wants something she gets it. I LOVE YOU AMY (SMILES)!

I want to thank all of you for your continued support and prayers. Please remember to keep Ray and all of our Caringbridge friends in your thoughts and if you would, stop by their sites and make sure to sign the guest books to let them know your thinking about them .


Big hugs,
The Copeland Girls

Sunday, October 10, 2004 11:40 PM CDT

Hi All,

Well, this week will be 2 weeks of Ray keeping all foods and liquids down. I am slowly weaning her off of the Zofran (which was the drug that was keeping her from vomiting) because I want to see if she will be able to do this without the drug. If she can, then my assumption would be that the brain swelling has gone down a bit?

As far as her "motor skills" are concerned, she still is having difficulty talking, she has to be assisted on walking, eating, drinking, holding her head up, sitting, standing and her drive to do anything other than watch movies and play her game boy is gone...hopefully temporary? Honestly it's like she is an infant again.

She is still attending home school. The schedule pretty much consist of art and some math. Because she has trouble holding a pencil (or anything for that matter) the school thing seems to be a challenge for her. She used to look forward to school, but this past week she has started to show signs that we might have to cancel home school...?????? To be determined.

She also is showing signs of what "I" think are depression. She is making very harsh judgements on herself and just has no wants to do anyting out of the house. She even makes comments about not wanting visitors (which she adores to death) to come visit. I will talk to hospice this week and see what the social worker suggest that I do about this.

Kristina went to her very first HIGH SCHOOL football game on Thursday. She had a blast. It took A LOT for me to drop her and her cousins off that night, but I also have to realize that these are things I need to start getting used to. I remember games being a very important social event when we were in school. Kris is really enjoying the school and especially is excited about the Choir class she made it in to. Her first Concert is on December 8th...mark your calendars.

We are pretty much settled here in the new house. I love the neighborhood. Very quiet.

I must go to put the kids to bed but please keep my sunshine and all of the sick children in your constant thoughts and prayers.


With Love,
The Copeland Crew

Friday, October 1, 2004 7:07 PM CDT

Hello Everyone,

This week has been yet another frusterating week. Necriosis is still effecting Ray's daily functions. Same side effects as last journal update had noted.

We visited Dr. Nicholson on Wednesday the 29th. Dr. Nicolson pulled me into another room with the Pediactric Dr. on duty, to let me know that they were unfortunately unable to tell weather or not the tumor was growing or if the issues Ray is facing daily is from Necrosis. The reason for the "unknowing" is because I wasn't able to make the decadron (steroid) to stay down in Ray so I stopped giving it to her. So they said the next thing to do was to put a "Pick Line" (aka a permanant I.V.)in her arm so we could administer medication to her that she needed. I asked the Dr. to please give me one more week to try mastering a way to keep her from vomiting up everything I gave her, so he agreed. PHEW! I had promised Ray before the appointment that she wasn't going to get "poked", I would have hated to have had to break that promise to her.

I was instructed to double up on her Decadron, she was prescribed Zantac (to help with the Decadron side effects) and an antifungal (to help with the Decadron side effects). She will also be scheduled for an MRI in 21/2 months. I wish they were able to do it sooner.

Hospice has been set up. We will meet with the team on Tuesday the October 5th. The good thing about that is they not only come to the house for medical visits, but they will also set up physical therapy and speech therapy for home visits as well. This is good since "SOMEHOW" the bank (whom I owe back payments to for car payments) has been informed of my address, so I don't know how long I will have vehicle to transport Ray back and forth to Dr. appointments for. So much for trusting people, you really thought you could trust! HMMMMM????

I started Ray on the Mannatech product today, and so far she has taken it like a CHAMP! By the way, I forgot to mention earlier in the update, but as of today, Ray has NOT vomited, it has been 2 days. I think I mastered the "ART" of keeping her from getting sick...keeping my fingers crossed! And we did it without the suppositories! Whohooo!!!!

UPDATE:

KRISTINA MADE THE CHOIR!!!!!!!!!!!!!!!!!!!!
I am still working on getting her "team" traded. But one thing at a time...right?

Marcie will be coming up to Oregon to visit us this next week. I am excited to see her. Marcie and I decided to keep this as a surprise from the girls. They are going to be so happy to see her.

Jason and Nawnie are going to be making arrangements to come visit for sometime at the end of this month. The girls are aware, and are awaiting patiently for a date to be marked on the calendar. They will hopefully be staying up here for 4 days and will keep the girls for the 4 days with them. The girls really need that time with their daddy and grandma.

We have another appointment scheduled to see Dr. Nicholson for Wednesday the 6th of October. Hopefully I will get more information at that point?????

Our buddy Jason had a "stable" MRI...good news! Thank you all for your thoughts and prayers for him.

Well, I need to start packing up a few things around the house. Tomorrow is our move-in date and well you ALL know what "FUN" goes into moving.

Please remember to sign the guest book!

Thank you for your continued support and prayers,
The Copeland Crew

Sunday, September 26, 2004 2:21 AM CDT

Hello Everyone,

Okay so I am 2 days late...oops. Sorry, very very BUSY! So much to do, so little time to do it. (I am sure we all know how that goes).

Update on Ray's health:

Unfortunately this damn Radiation Necrosis is currently a HUGE battle. It is very hard to sit here and watch my baby slowly deteriorate in front of me and have NO way to help her. The Necrosis involves effects such as: Vomiting, drooling, fatique, partial facial paralysis, weakness, slurred speech and the worst of all is her lack of spirit. She cries every day, ,multiple times a day because in her words " I HATE THIS TUMOR, I WANT TO BE MYSELF AGAIN, AND I HATE MY WALKER". How do you comfort your child when she is voicing the same feelings you deal with and you have ABSOLUTELY no answers or comforting things to tell her? SO FREAKIN FRUSTERATING! WHY, WHY, WHY...WHY MY CHILD? I will be perfectly honest, I am scared out of my mind watching this crap happen and feeling helpless. Being a parent, you put on that happy face for your child and the others around and tell yourself "You can do this", "We will beat this", "One day at a time"...etc. Then you get a moment by yourself and you start questioning...EVERYTHING that you have tried to convince yourself (and others) of on a daily basis.

She continues to be on the same medications as the previous journal had stated. But...we had to stop giving her Protocel. She just can not keep it down. We have however, found another alternative product to give her. The product is through a company called Mannatech and she actually will be taking the following products from the company:

2 teaspoon bulk Ambrotose THREE times a day in juice or food mixed 1:1 with granular soy lecithin*
1/3  tsp Phytaloe Bulk THREE times a day in juice or food (tip: mix in tomato juice or soup, cottage cheese, salsa, hummus, pizza, or spaghetti sauce)
1 Sport THREE times a day
1 Glycobears THREE times a day
*The product is for 1:1.  That means use the1 tsp Ambrotose bulk to1 tsp granular soy lecithin for a total of 2 teaspoons altogether.
IF NOT IMPROVED IN A MONTH WE Will NEED TO INCREASE AMBROTOSE BULK TO 2 tsp FOUR TIMES A DAY. 

It was also suggested we do gamma ray or protien beam, but I remember talking to a the Dr.'s at Children's San Diego about the Gamma Knife and was told that that option wasn't an option with her type of tumor. So I will wait for Wednesday to talk to Dr. Nicholson about that option along with getting Ray set back up with Speech Therapy and Physical Therapy, she is need of those 2 programs.

Ray's school is doing good, she still is looking forward to her teachers daily visits, she watches the clock like a hawk and if the teacher isn't to the house by 3:30, we are ALL aware of this. Kris is loving school and is going to try out for competition choir on Monday...keep those fingers crossed for her to make it. She is really excited about this activity and I sooo want her to get this, she really deserves it. She is trying to get me to convince her school that she needs to switch teams. All of her old friends are on "the other team of classes" so she doesn't get lunch or any classes with them. I will see what I can do for her. I think friends for her right now are very important, now if only I can convince the school of the same thing.

We will be moving to our house on October 2nd...YIPPEE! The kids are so STOKED! I am too! We will now get that bit of "normal life" back. You know, our beds, their toys, not living out of boxes in mom and dad's garage...etc. I love mom and dad dearly, but when you have been on your own for so long...you learn your OWN ways of things. As an adult A LOT has changed. I appreciate my parents opening their home to me and the girls and giving us that extra love and comfort we have been needing. I love you guys!

To all our family and friends in California Big Hugs and Kisses! You all are missed! Hopefully, "health permitting" and "money permitting" we will be able to come visit soon.

Please everyone keep all cancer patients in your prayers and keep our bud Jason in your thoughts as he goes in for his MRI on Monday.

Thank you all for your continued support,
The Copeland Crew

Thursday, September 16, 2004 10:23 PM CDT

Well again I need to apologize for the long pause in the journal update. I have now hopefully fixed all of my computer issues which have hindered my efforts to update.
Thank you all so much for your patience.

Alot has happened in the time since the last update.

I had noted that Ray was feeling great but unfortunately she started to feel bad over the Labor Day weekend. As of Monday September 6th (Labor Day) we had to rush Ray into the Emergency Room at Dorenbecher's because she started to vomit, was very lathargic (sp?), and VERY unsteady to walk on her own. At the ER they performed a CT scan and came back to tell me that they didn't use contrast which unfortunately made it impossible to give us any more information than that of what we already new..."There is a tumor mass in her cerebellum" REALLY IS THAT WHAT YOU FOUND...HMMM WE HAD NO CLUE. So we were given a script for Zofran (an anti-nausea tablet to keep her from the vomiting) , told to see her Primary in 3 days...so we waited. Once we made it to her Primary (whom we absolutely are impressed with already) her situation was accessed and she was given... a script for...Dexamethasone (Steriods) which would hopefully help her from vomiting. This time she was put on a very low dose. Dr. Calcagno (the primary) referred us to an MRI schedule for that upcoming Monday and reffered us to Dr. Stacy Nicholson (Head, Pediactric Hematolgy/oncolgy (Division Chief) and Director of the Kenneth W. Ford NW Children's Cancer Center at Doernbecher Children's Hospital). Monday's MRI went VERY well, except for the fact that I wasn't given any information...and we play the wait game, until we were able to see Dr. Nicholson on Wednesday the 15th. Once we made it to Doernbecher's we were joined by Dr. Nicholson and were told that they wouldn't have the "comparison" of the MRI scans until later that night or even into the next morning. Again...WE WAIT.

Finally at 4:50pm on Thursday the 16th we were given the results. THE TUMOR HAS NOT GROWN (Big Sigh of releif, followed by a river of tears). It is still the same size it was after radiaition ( the size of a cherry). What she is experiencing is Radiation Necrosis. Dr. Nicholson is hopeful that with the combination of steriods and time Ray should start to feel more like herself in time.

I to be honest with you was going to take her off of Protocel (because I thought it was groweing back and I was being negetive towards the product) but I will continue to keep her on Protocel as long as it keeps on working for my sunshine. We have had to reorder Ray her walker and wheelchair due to the unsteady and weak legs she is experiencing. But Miss Independent, is constantly refusing these options she is given for assistance. Ray's weight has dropped dramatically in the past few months she is now 59lbs and back to wearing her normal clothes (which for some reason are swimming on her).

We will hopefully be moving into a house in October (currently we are living at my mom and dads). Kristina is loving her new school and has met a lot of new friends. Ray will not be going to school as we had originally planned, instead she is doing homeschool and starts Monday. We met the teacher today and she is a very nice lady.

The girls had a Wonderful time this past weekend with Jason when he came up to visit. Jason plans on coming back to visit in a few weeks so the girls are really excited for his return.

Well my eyes are starting to get tired and I need to go spend some TLC time with the girls before bed so i will end this journal but I will be back next week to update the "Friday Informer".

Please continue to keep Ray and all other cancer patients in your prayers!

Big hugs,
The Copeland Crew

Saturday, August 28, 2004 6:21 PM CDT

What a difference a month makes...EVERYONE BARE WITH ME!

This may come as a surprise for some of you but, the girls and I have decided to stay in Oregon. We couldn't leave the wonderful weather. No, seriously, Ray wants to be here where she considers her home. If she considered Iraq her home, I would be there. I'm sure all of you can understand the sentiment.

Please don't abandon us because of the move. We are still the same people--just in a different place. We could not have gone this far without all of your support and we still need that.

Currently we are living with my mom and dad until I am able to get on my feet and on my own. A special thanks to my parents for all of your help and guidance.

The list of things you have to deal with when you do something like this is overwhelming (especially when you have a sick child). I am doing the best I can with: Social Security, Unemployment, Insurance [WOW], doctors, hospitals, transferring documentation and records, schools, transferring of possessions from one state to another, bill collectors, rent collectors(we just signed a 1 yr lease in April) and all of this with NO FUNDS! YOU GET THE PICTURE...FUN STUFF!!!!!

I can't wait to get Ray set up with Doernbecher's Children's Hospital so I can get her in for a follow up MRI and I need to get her started back with Hospice, I now realize how much help Hospice is and how much easier life has been having Sherice (our Social Worker from Children's Hospital in San Diego). It's that old saying "You don't know what you got until it's gone".

Ray is doing pretty good. I have been noticing a bit of staggering when she walks and some weakness on her left side. I am not sure if this is something to be too concerned about, but I of course am VERY concerned. Besides the staggering and weakness Ray is in GREAT spirits and is having a wonderful time. She is eating "normal" again and is full of energy. Ray is continuing to lose more weight; the clothes we brought up to Oregon are all too BIG for her.

I have enrolled both girls into school. Yep, Ray has decided to go back to school this year and is VERY excited about it. Kristina is stoked to go to her school and can't wait to see all of her "old" friends again. We are lucky enough to be in the same school district as we were in when we lived here 3 years ago. Both girls of course are missing all of our friends and family in California (especially Daddy), but are aware that they will be able to visit shortly.

My apologies for the lack of updates lately. I will try to keep the site updated weekly again. I also will try to get caught up on the guestbook signatures to our caringbridge friends and reply to some emails that I have neglected. I have had a lot on my plate lately so time is currently an issue and I have computer issues until Jason mails me my computer up here. If you are having problems getting ahold of me,Amy Cakebread has volunteered to give her email address out as a point of contact for messages. She checks her email pretty much daily and won't mind contacting me and letting me know your looking for me. Sorry for any confusion, this is the best I can do for now.

Her email address is:cake4u@teleport.com

Please continue to keep Ray in your thoughts and prayers. If you are interested in the phone number please email me direct and I will reply with a phone number. My cell phone has been disconnected, so you will have a hard time getting me on that number. I have updated our address on site for anyone who is in need of it.

One last thing, if anyone has or knows anyone that has access to a moving vehicle...van, truck, long distance truck driver..etc that would be willing to help out please let me know. I was given a quote to rent a 17ft truck from Uhaul at.....$6000.00....WOW! Their excuse was "Supply and Demand"...whatever, I call it highway robbery!

Hugs,
The Copeland Crew

Monday, July 26, 2004 9:49 PM CDT

Hello All,

Made it to Portland on the 14th. The train ride pretty much sucked. But it was pretty. The saying about a silver lining rings true again.

Been busy visiting everyone from up here. We were with my parents up until the 21st. The girls and I had a great time there. It is great to see Ray's face as she sees everybody she has been missing. She is so happy.

We went to the May family house on the 21st. We visited the river, got ate by some major mosquitos on steriods. They ate us up like desert. But I would not have traded any
bite for the world. The girls and I had a great time there.

Saturday we met the Cakebread's at the beach. Where we spent 3 lovely, very relaxing days. It was a whole bunch of fun. We sat on the sand and played in the ocean. Except for the 7 hours of driving in traffic, it was perfect.

Tomorrow we are headed back to the May's for 5 days. Angie is planning a poker party on the 31st. If you want more information on the event, please contact Amy Cakebread at cake4u@teleport.com.

After the poker party we will head back (the three hour tour) to Portland. We plan on visiting the Gary's, the Cakebread's, and the Gumps. I really don't think I will make it back to California....Just joking.

Ray's health is doing great. We have an ophthalmologist appointment on Aug. 20. Cross your fingers that they can make some positive change.

I was so touched to meet Isaac and his family. What a strong family they are. However, I was so very sad to hear that he got his wings and went to heaven on Friday, the 23rd. I was very glad to meet and spend some time with Isaac before he passed. It meant a lot to me. If you have a chance, please visit his site and extend your condolences to his family.

Please remember to keep Emerald, Cheyenne, and Kaidrie in your thoughts and prayers. Please send a special prayer in the names of Melanie, Gary and Lucas as the say good-bye to Isaac.

Don't forget to drop a line or 12 in the guest book...

Happy trails,

Team Copeland...aka The Copeland Crew

Thursday, July 8, 2004 10:40 PM CDT

Ray-Anne is still feeling very good. We pray she stays feeling that way. We are continuing to give her Protocel (the alternative we have chosen) as directed and she is now showing no problems when taking the product, such as vomiting.etc. Her appetite continues each day to get a "wee bit" better.

Ray just walked in and would like you all to know that she is doing great, she doesn't use a wheelchair or walker anymore, she is loosing her steroid weight and she is doing alot of swimming. She also is very excited about going to Oregon, and would like Nana & Papa to know that she wants to sleep in their bed with them...like she used to do when she was a "small kid"...like when she was 3 or 4 years old. She says goodnight to everyone...love Ray-Anne.

Okay, I have put the girls to bed. I love them both so much. I love putting them to bed...HUGS & KISSES and good night talks (I just can't get enough of them). Krissy is back from camp and had a BLAST! She wants to go every year and then by the time she is 16 wants to become a counselor for the camp. She met a lot of new friends and will keep in contact with many of them.

We are getting closer to the 13th. This is the day we will be getting on the train for our trip to Oregon. The girls are counting down the days...Ray's counting down the hours, I think I am counting down the minutes..LOL!

We had a wonderful time on the 4th at Shelley's house. We all went swimming, ate really good food and enjoyed great company and of course some fireworks to end the evening. Thank you Shelley and Don for the invite, we all had a terrific time.

Tuesday we all were invited over to Marcy's house for dinner, the kids had a great time and so did the "big girls". Wednesday we hung out all day with Marcie and the boys, and then Austin stayed the night with Ray and I took the kids Thursday morning to pool. The pool is the place the girls like to hang out at because it has a water-slide, that they can't get enough of.

Ray had a visit this week from Hulia (her hospice playmate) on Tuesday which went well (she asked her to stay longer...it was so cute), and I unfortunately missed her weekly visit from Michelle (her nurse) on Wednesday... I guess I will have to reschedule it for Monday, before we leave for Oregon.

I would like for you all to please take a moment to visit Isaac and Emerald (links are above) they both need all the prayers and support we can give them, as they are not doing to well right now.

Please continue to pray for our Ray and we thank all of you for everything you all have done for Ray and the family.

God Bless,
The Copeland Family

****Update for July 10th****

R.I.P. Joshua Zellin, you will be missed!

I think I may have jinxed my Sunshine from Thursday's update. At 1:00am Friday morning I was woke up by Ray crying uncontrollably saying that her ear was hurting her. This went on for a while and then at 6:00am I finally called Hospice to ask if there was anything I could do. Michelle (ray's nurse) had me give Ray some Benedryl (to reduce swelling) and Tylenol (for pain) which I did only to have Ray vomit it all up. So I called Michelle back to tell her what had happened, Michelle decided she needed to come for a visit. Michelle got to the house at about 10:00am, looked at Ray's ear and as we had thought Ray's drum was very "bulged". Vomiting was probably from the pain. Ray vomited a few more times during the day and after the medicines were delivered and administered slept pretty much the whole day...and night. Today she is feeling GREAT! She was up before me, dressed, Jay had already given her, her meds and she had ate breakfast. She is fine now.

Also, you probably have already noticed but we have some really special people doing some upgrades to Ray's site. Doesn't it look good so far!

Friday, July 2, 2004 11:22 AM CDT

Hi All,

We have had a pretty nice week (with the exception of missing our Krissy). Ray's health and spirit seem to be as it was pre diagnosis. She is having such a cool summer so far, and it has only just begun.

I received a phone call last week, Ray has been approved for her Opthemologist Appointment. We will be going on August 20th to consult with the doctor. So let's pray good things will be able to happen from this visit.

Last Friday we went to watch Harry Potter (which they really liked) and now they are trying to get me to take them to watch "White Chicks", this is a PG13 Comedy so it is a movie I can take Kris to see but I am still debating on taking them to see it, because I don't know if Ray is able to watch it? So if anyone has seen it, please let me know if you think Ray should be able to watch it or not.

BIG NEWS FLASH....

We took Ray to the San Diego County Fair last night because Joan Jett and the Blackhearts were playing (WHO OF COURSE IS HER FAVORITE SINGER). When we got there the concert seating was free w/admission to the fair so the seats were first come first serve...we ended up getting front row seats. So as we are sitting there waiting for the concert to start, Jason decides to start talking to the security...soon enough we are BACKSTAGE. Ray got to meet Joan Jett! You should have seen the look on her face (where is the video camera when you need it). She got autographs, pictures, hugs, a signed CD and Ian (who joined us to the Fair) got a guitar pic that was used by the band, both her and Ian were allowed to go on stage (before the show) and were shown the sound booth. What a good time we all had. Ray was ABSOLUTELY CRAZY. She is definitely a "ROCKER". Our girl rocked her heart out, singing, screaming, dancing, having a great time. We brought the camera and Geannie brought hers too, so we will be posting a bunch of pictures soon. This is one of those memories you wish you could bottle up and keep forever. I loved just sitting there taking it all in, watching Jason and her have a good ol' time. After the concert we took Ray and Ian on some rides and then decided to go home...THEY WERE BOTH EXHAUSTED!

We pick up Kristina tomorrow.. YIPPEE! I am so excited. I can't wait to hear all about her camping adventure. I bet she had a great time.

For the 4th we will be hanging out at Shelly's house. She has a pool the kids could enjoy themselves in, while the adults BBQ and have a good time. Shelley's house is a prime spot where you can see the fireworks that are being let off at the park from. We will have a great time. Sia will be there so the girls will be happy.

I want to take a moment to thank a few people. I am not sure if they would approve of me typing their names so I will just say a huge..THANK YOU! For your very generous gifts. You have no idea how thankful we are for your kind gestures. Thank you sooo much. Kaidrie, Ray-Anne received a very nice package from you yesterday. She loved the barbie and really liked the picture you colored for her. How did you know she loves those hair accessories? Perfect color choices too. You are so sweet, Ray and I want to thank you for your presents.

TO ALL OF OUR FRIENDS AND FAMILY...THANK YOU ALL FOR EVERYTHING. NOTHING...I MEAN NOTHING GOES UNNOTICED. WE APPRECIATE EVERY SINGLE ONE OF YOU AND LOVE ALL OF YOU VERY MUCH! KEEP CALLING, SENDING LETTERS. EMAILS, TIME, PRAYERS AND MOST OF ALL LOVE OUR SUNSHINES WAY AND I KNOW WITH PRAYERS AND LOVE SHE WILL CONTINUE TO GET BETTER!

Hugs and Kisses,
The Copeland Crew

Monday, June 28, 2004 7:39 PM CDT

Okay so I again didn't get a chance to do the "Friday Informer". Maybe at this point I should call it the "Weekly Informer".

To be completely honest, I went on a "Me Vacation". I decided on Wednesday that I needed to get out of the house before I went completely crazy. SO I DID! I know that may sound a bit selfish but I had too. If I had to clean one more dish, do one more load of laundry, play one more board game...etc I was going to go "A-Wall".So before I did, I rescued myself. Jason agreed and sent me to visit Marcie...Girls night out! Don't get me wrong, I lLOVE being a housewife/mom now, but this job can get difficult. I have been working full time since I was 15 years old so I never had a chance to experience this at home thing, I am sure it's something that I will grow in to.

Enough about me!

Ray is doing WONDERFUL. Her Physical Therapist has given us the okay to reduce the amount of appointments Ray is authorized for. Kasey (the PT) says that Ray is too independent right now to need the therapy. AWESOME HUH! The food intake continues to be about the same. Although she is putting in extra efforts to add things to her daily diet.

Protocel lysing seems to now be in the form of oily hair and oddly enough, her ears have a strange odor coming from them. I will attempt to take the smell away by using ear drops prescribed by hospice to clean the ears. Hopefully this will do the trick.

Kristina is off to camp "Reach for the Sky", courtesy of the American Cancer Association. She was so excited this morning, but nervous too. First time to a camp, I can't blame her. She is such a likeable person, she is going to be fine. Ray however was in tears the minute Kris stepped onto the bus. She was so cute. Tears falling down her face, looks at me a say's "Who's going to play with me?", so I replied "What am I, chopped liver?"...that broke the tears and brought on the smiles.

It is official we are heading to Oregon via the Coastal Train on the 13th of July. So Oregon, Ready or not here we come....The girls are both so excited to be able to ride the train. We are taking the most beautiful route (so I am told). We are bummed that Jason won't be coming with us. We will be apart on the 17th...our 12th Wedding Anniversary, but as Jason put it, we can celebrate it before/after we leave.

Please continue to pray for our Sunshine. The prayers are working.

Thank you so much for you continued support. We love all of you.

Big Hugs,
The Copeland Crew

Monday, June 21, 2004 4:16 PM CDT

Sorry I didn't get the update done Friday...I was a bit busy last week getting ready for our Father's Day camping trip. Late is better than never...right?

Last week was a pretty eventful week. Saturday we had Marcie, Steve and the kids over for a BBQ, along with Ray's cousins and Yvette and Ian. We had a blast playing in the pool, having water gun fights and playing games. The funniest part of the evening was when we put the kids in the house for the night. They all had flash lights turned out all the lights and would chase the adults out of the house like a small town running an out of towner out of their village. If an adult would come in the house they would literally "attack" us and push us out of the doors. We had a great time.

Ray went back to school starting on Monday. This week was the last week of school, so we gave it a try. She went to school Wednesday and then on Friday too. She really did good. The kids in school/class did great too. Kids at that age are so completely caring. You could see in their eyes the concern they had for Ray and that they were so happy to see her back to school. The teachers and the staff were also very caring.

Thursday we packed and shopped for our 3 day camping adventure to Julian (William Hiese) with the Apfelbaum family. We had a great time. All of us went on a 0.5 mile hike (including Ray) . I was so proud of her for making it through the hike..I barely made it myself. They had water balloon fights, played hide in seek, did rock beauty contest (don't ask...just a game I came up with to keep the kids busy and entertained and was completely successful at) played at the park, scavenger hunts and just plain had a good time. Jason had a great Father's Day weekend and thanked the girls for a wonderful time on the way home.

I have to mention that on Thursday we also went to PT. Marcie and Dylan came with us so they got a chance to see Ray in action. Ray's PT was a total shock to us all. Kasey (her Therapist) asked Ray what she wanted to do and Ray ran with it. By the end of the hour, Kasey was out of breath. Ray drag her from activity to activity not taking any breaks for the full hour. She had sooo much energy I was even shocked. Marcie plans on going with us this Thursday for PT again, she said it is really interesting to watch.

Ray's health and spirit are in great condition. We have only had a few things that went "sour" this week. Due to us being about a month into Protocel, I think we are noticing a type of lysing happening to Ray. About 10 minutes after taking her dose of Protocel, she gets nauseous and on 2 occasions actually vomited. After having an email conversation with another parent who has his child on Protocel and even takes the product himself, I am at ease with the occurrences and feel that it is a part of "lysing". The other issue that happened this week is that when we returned home yesterday from camping Ray complained of a headache and a backache. I was a bit concerned but when it went away after eating something I was able to disregard the anxiety I received and figure it was due to hunger. The backache was probably associated with sleeping on the dirt for 2 nights straight. She is feeling great today.

SCHOOL IS OUT! Krissy is getting ready for her camping trip to "Camp reach for the sky". She is really excited. I am too, I as a child never went to summer camp, and I think this will be something she deserves, enjoys and really needs. Have I ever mentioned what a wonderful child I have? How proud I am of Kristina in so many avenues? She is definitely an inspiration too me and I love her dearly.

I am still trying to gather financial information to set a day to go on our Oregon trip (Oregon...please be patient with me while I figure it all out, we will be there even if I have to hitch hike..hehe). Plans have kind of changed (as most of you may already know). Looks like the girls and I will be the only ones who visit this summer. Due to the "turn of financial events" Jason is going to have to stay behind. He really wanted to come but he said "someone has to make the ends meet". But he really wants us to go so we will get there one way or the other. Hopefully I will know something very soon.

Michelle (Ray's Nurse) came in today for her weekly visit. She weighed Ray and she is down to 70lbs. She also will be checking on the status of the opthemologist visit to see if we can be approved to get surgery on Ray's eyes. One of the Dr.'s at Children's Hospital said that the crossed eyes and double vision is probably correctable but since we are on Hospice, they make the calls. If i have to, I might have to drop Hospice to get this taken care of and then resign after I get the appointments approved for the opthemologist visit. Hopefully I won't have to go that route, but I might be forced to do it. We will see come Monday. Michelle and i also talked about getting a follow up MRI done soon and we agreed that we will let Ray have a fun summer and then will get the MRI done in October. I was informed that Radiation works for up to 6 moths after it is complete, so unless there is reason to have to take the MRI, we wont take it until October.

Hulia from Hospice will be coming in tomorrow. So I will update on Friday how that visit goes.

I want to thank all of you for they nice comments in Ray's guest book and also for the wonderfully sweet emails that I am receiving in my personal email. You all are just wonderful and we are so thankful to have you all in our lives.

Keep the prayers going for Ray-Anne and please don't forget to pray for our Caringbridge friends. I would also ask that you please keep our very good friend Jason Gump in your prayers as he will be going in for a follow up MRI this week. I would also like to publicly CONGRATULATE Jason and Devin Gump on their pregnancy. Devin please call us when you find out the sex of the baby.

That will conclude this weeks entry and I will update again come this Friday.

Big Hugs,
The Copeland Crew

Thursday, June 10, 2004 11:26 PM CDT

Hello Everyone,

Today I am writing for Ray-Anne. She is currently sitting next to me helping me type.

Ray says she was sick today. She vomited at her 7:00am Protocel intake. But after a bath and a long 3 hr nap, she says she felt better. We think the reason she vomited is because she had an empty tummy when she took it. Otherwise than the vomiting today, Ray had a great week.

Ray is now going to bed...she says "Good Night Everyone".

Alright, I put my Sunshine to bed. She is sleeping in Krissy's bed tonight.

Let's see, this week was another great week. I picked Ray up from Aunt Pooh's house on Friday and was greeted by my niece Kayliegh who wanted to spend the night with us but we ended up asking if we could keep her for the WHOLE weekend. So I took her and we all had a great time with her. Friday afternoon we all went to North Broadway Elementary (Ray's School) where we had a wonderful time at the "Kids Day" event. Ray's best friend from school, Yvette, came home with us and stayed the night. Lion King the movie was the night cap.

Saturday was so warm we decided to go to Toys R Us to pick up a pool. WHAT A GREAT GIFT TO BUY KIDS! Kris had her best friend Lizelle over and Lizelle's sister too, we invited Ian (our friend and x-neighbor) and the kids ALL had a blast. Ray looks forward to the pool EVERY DAY now.

Michelle, Ray's Nurse, came by on Monday and everything is great with Ray. We were also visited during the week by Hulia (Ray's Play Friend from hospice) . Ray FINALLY opened up to her. They played games and Ray is looking forward to Hulia's return visit. Janine (the Spiritual Counselor) came by to check up on Ray as well. Ray was a complete chatter box with her...I think she is starting to get used to her "new friends" from hospice.

On Tuesday we went and picked up our new family addition. Yep, Ray finally got her dog. What a cutie. She looks a lot like Xena and is very well tempered like Xena too. She fit right in to our home. Ray named her Cindy, which is short for Cinderella. If you know Ray...that name was coming a mile away.(hehehe). We got the dog from a sweet couple who fosters dogs. What great people, they gave the dog to us as a gift for Ray-Anne. (Picture's to follow).

Mrs. Holland (One of Ray's teachers) put on a Tea Party for Ray at 150 Grand, in downtown Escondido. Oh my goodness, how cute was that. Ray's friends (Girls Only of course) all dressed in their nice dresses, threw on boas, wore feather hats and masks to Tea. They served Raspberry tea, finger sandwiches, fruits and cookies. The girls ALL had a WONDERFUL time. Thank you so much to Mrs. Holland, Mrs. Parvis, Mrs. Campbell, Mrs. Houston, Mrs.Tabin and all the girls who attended. You really made Ray's day. There is nothing better for Ray, than being able to dress up and act like a princess.

Kristina got her birthday hair from us finally. I told the hair dresser to give her highlights but by the time Kris came out to the lobby, SHE WAS ALMOST BLONDE. I about freaked, but it turned out nice and she likes it. It is a good look for summer.

We unfortunately didn't make it to Physical Therapy, School or her hair appointment today. like we noted earlier she was feeling yucky this morning so I decided to cancel ALL appointments. She did however take her nap and by 3:30 was feeling great. She asked for her friend Ian to come over so they could go in the pool. They had a great time this evening together. Ian can put a smile on Ray's face pretty much ANYDAY. Thank You Ian.

Speaking of Ian. Ian went on the boat trip Monday and brought in the "JACK POT FISH". I believe I was told it was a Barracuda. Good Job Ian!!!! Jason and Kris had a good time on the boat and they want to do it again. Thank you to ALL who went on the trip for Ray-Anne, I hope you all had just as good of a time as Jason & Kris did. And thanks again to Shelly for your dedication to this trip.

Ray's health, spirit, and attitude are great currently. She is enjoying herself as are we.

Please continue to pray for Ray-Anne as they prayers seem to be working. Also please keep in mind all of the other kids when praying, as there are a lot of children who can use your prayers.


God Bless you all and thank you for everything,
THE COPELAND CREW

Friday, June 4, 2004 0:08 AM CDT

Hi all,

Hope your week was as great as our week has gone?

Ray-Anne is doing very well currently. She continues to progress with every waking morning. She is completely off all "Medically Approved Medicine" and is solely just taking Protocel. The tummy aches still come and go, but are getting less frequent now. Her eating (or what she likes to call eating) is still less than a bird would eat. I think everything she has ate this whole week can fill the palms of both of my hands. I was worried, but the nurses have reassured me that as long as she is keeping hydrated, she should be fine, and she ALWAYS has a bottle of water in her hands...to the point where she won't even go to bed without her water bottle next to her. The product indicates that we should most likely notice "lyesing". This is a process that happens when the body is basically cleansing itself of dead cells...which is a good thing. Lysing can be noticed in many ways, for each person it is different. I think I found Ray's lysing...I won't discuss where her lysing is coming from...let's just say the Protocel is most likely causing the "frequent visits to the bathroom".

We had a very fun Memorial weekend. We BBQ'd with the Apfelbaum Family on Saturday and then had another BBQ on Sunday with a few friends and neighbors. You should have seen the water fight that lasted for what seemed like forever. All the kids (yes including the "BIG" kids) got involved. Ray was running around, laughing, squirting, playing, doing what kids should be doing. The weekend was a complete success. Ray now wants to have water fights DAILY. Get the water balloons and squirt guns ready for any trips to the Copeland house, you NEVER know when you'll be ambushed.

We went to Physical Therapy today. Oh, how Kasey (Ray's Therapist) was amazed at the 2 week progress Ray had made. She had to move Ray to a completely new routine of exercises today. Her mouth about dropped to the ground when Ray told her to watch her skip, jump and run. She looked at me and said..."When did this happen, How long has she been doing this?" See the last time we were there (and all others before) Ray was VERY limited to certain what you would call "simple" exercise routines. We are almost done with PT. Kasey said she will try to get more appointments approved...and we can use them if we need to...and if not, then we won't have to.

Her home schooling is going very well. I was just given the news last Friday (I believe) that Ray will be allowed to pass to the 3rd grade. Cool Huh? Now we pray she'll want to go back to school after the summer is over. I would LOVE to see her back to her "normal" routine again. Although I will admit, I have gotten very used to the idea of being with her all day long. A strong friendship/bond has developed between me and both of my girls, which I horrifyingly admit, I never had with my girls. I was always too busy working, cleaning, taking care of the "IMPORTANT STUFF". That unfortunately is ONE of the MANY lessons I have learned through this whole thing.

EVERY DAY IS PRECIOUS, NO ONE IS GUARANTEED TOMORROW.

So Ray went over to Aunt Pooh's to stay the night tonight. She heard Jason was going over to their house and made it a "POINT" that she wanted to go see all of them. So we called Pooh (Aunt Wendy) and made sure it would be okay and of couse it was.I did not now what to do with myself tonight, I felt a bit weird without her here. Kris and I did however get to spend "one on one" time with each other. This is a very big treat for us to get. After our little outing, we came back and watched "Matchstick Men"...I like that movie. But she of course, couldn't watch all of it because CSI was on at 9:00. SHE HAS TO WATCH CSI. For those who don't know already Krissy want's to be a CSI Agent, so this show is a MUST see each week.

Kris and Jason went to her field trip to San Diego Zoo today. Kris couldn't stop talking about it tonight when she got home. She said all of her friends think that her dad is "COOL". School will be out n the 18th. I want to get both girls into swim lessons this summer. There is a pool right around the corner from us and daily free swim is only $1.00 a day. We might be there alot this summer...it gets freakin hot out here.Kris will be going to summer camp on the 27th (hopefully I got the paperwork in on time????). Then we plan on making a trip to Oregon. Ray REALLY wants to go see everyone. Nana, Papa, Aunt Kat, Bree, Amber, Jo, The May Family, The Cakebreads, The Gumps. She asks me EVERY day when we can go visit. I MUST make this trip happen for her.

Oh, the fishing trip is this Monday the 7th. Jason, and Kris will be the only ones going. Ray has decided to stay on shore. She is afraid she will get motion sickness from the boat. So to all going, BE SAFE and HAVE A WONDERFUL TIME.

Well I think that should wrap it up. Thank you everyone for the cards, gifts, guest book greatings, the fundraising, prayers and thoughts. You all are held dear to our hearts.

Please continue to pray for our Sunshine, I would also like for everyone to please pray for Jason Gump (a close friend of ours) who also was diagnosed with a Brain Tumor, and all of the children/families dealing with cancer.

God Bless you all,
The Copeland Crew

Thursday, May 27, 2004 10:08 PM CDT

Hi Everyone,

I will be quick this week. Nothing much to update.

We have continued Ray on Protocel. So far, so good. Praying EVERY day this is going to react the way it has for others on the product. Ray isn't really eating much lately. A few bites from each meal. I am not sure if this is because she is coming off the steroid, or if this is because of the Protocel.

I also wanted to clear up a small misunderstanding. Some people are under the impression that hospice is with us 24/7. While yes, we signed up with hospice we only signed to get to know the care givers (if for whatever reason we needed them) and to make sure we were able to get all the medications and supplies Ray needs (since we were having some difficulty). Hospice does make a 15min visit once or twice a week, but this is just standard, AND I am given the option to NOT have them visit if I so choose.

For those who may be concerned about the product we have chose to give Ray-Anne. Well, to be frank, and all do respect.... THIS IS OUR CHILD. THANKS FOR YOUR CONCERN BUT WE HAVE DONE A MASS AMOUNT OF RESEARCH DAY IN AND DAY OUT. PROTOCEL IS THE ONLY PRODUCT THAT HAS ANY POSITIVE FEEDBACK. WE HAVE AND CONTINUE TO KEEP UP ON ALL THE OTHER BT PATIENTS ON THIS PRODUCT AND THIS IS THE BEST THING OUT THERE FOR THIS TYPE OF BT. As always, I will always respect your opinions and even look into ANY input that is so graciously given to us, but in the end WE are Ray's parents and WE ARE AND CONTINUE TO do the BEST we can for her and ANY decision we choose for her WE ARE CONFIDENT that those choices are correct. Please have faith in us and don't doubt us, there is NOT many choices out there.

Everyday continues to be a visual progression with Ray. She is so much more energetic and laughs a lot now. Her day doesn't revolve around the bed or couch. She likes getting out to go shopping, on walks, or just hanging out with us. On Monday night we had our "princess party" and she was just as enthused as all of us were. She joined in the fun, was dancing, singing, smiling, was acting like my Sunshine again. I cherish these days.

Tuesday however we did have a "down" day. Ray woke up with horrible stomach pains. This lasted over an hour when I finally called Hospice and asked what we should do. They instucted me to give her some oral pain medication which seemed to help. Wednesday was followed by the same pains, but she made it through them without the medication. We aren't sure what the pains are from. It could be either the withdrawal from the steriods or the introduction to Protocel (as the instructions say to take with food, but she isn't eating much). Again, time will tell...I guess???

We had a wonderful time with Angie, Bailey, and Amy. Thank you guys for the wonderfully fun packed week. We are planning our visit to Oregon, so watch for us. Bailey, you are absolutely BEAUTIFUL!

Ray wants to read me a story (Dr. Suess...Are you my mother) so I should end. Please keep Ray in your thoughts and prayers and we can't thank all of you enough for your continued support.

***Don't forget to sign the guest book, so Ray can read your thoughts***

Please have a safe but fun Memorial Weekend!!!


Love you all,

The Copeland Crew

Saturday, May 22, 2004 0:41 AM CDT

Greetings to all out there,

Amy's Diatribe:

We are having such a good time here in California and Crystal gave me one of my fondest wishes--she is letting me type the journal entry for this week. As was posted last week, Angie, Bailey, and myself (Amy) are out visiting for Kristina's birthday. She is turning.....no, I can't type it, that would make it too real.

As for the week, the Celebration of Champions last saturday was "awesome". One of the most touching events for Crystal was the walk in memory of lost loved ones. Tissues were in great demand. Visually you saw family members and friends holding hands, carrying pictures and balloons. They walked the entire track and met up in the center to release the balloons. I am crying just thinking about it. Then came torch relay with the children currently in treatment for cancer. Crystal was surprised at the number of children in the relay. Ray-Anne was accompanied by a news anchor from a local news station. She was also accompanied by her sponsors from Medline. Ray was a bit tired from all the waiting for her turn, so Jason was the wagon horse. The cheering from the sidelines as she was carrying the torch was staggering. This was followed by staff running the track. It ended with a very emotional run by the long-term survivors of cancer. To sum it up, Crystal and family are anxiously waiting to do it again next year.

As if Saturday was not exciting enough, the walk was followed by a Padres game at the new Petco Park. Ray-Anne and fellow children were allowed on the field for a pre-game ceremony where they were recognized for being such wonderfully courageous kids.

RAY-ANNE STARTED PROTOCEL ON WEDNESDAY (the 19th). Currently, there are no obvious side effects. The taste doesn't seem to be too terrible. We try to mix it with a real strong juice to mask the 'medicinal' taste like cranberry/strawberry, apple, or grape juice. The hope is that this alternative supplement will do more than the medical community expects of it. She takes this every four hours--7,11,3,7,11...you get the picture.

Michelle, the hospice nurse, came Monday (the 17th), and today. Ang and I had the pleasure of getting to meet her. She is a very nice lady and I am very glad she is here to help. Although Ray-Anne was a little shy with her today, you could tell she likes Michelle. I think Ray was worried about getting a shot. But that didn't happen today. Michelle came and took Ray's vitals only. She also took Bailey's and Angie's as well. I really like her.

That leads us to Thursday, which so happens to be the day I arrived. We have been jam-packing our days with laughter, hugs, kisses, and lots of love. Ray and Crystal picked us up after PT. When we saw the truck with them in it, we let out a huge whoop. I think we scared some people. After much hugs and a long awaited reunion for Bailey and Ray, we tried to find the beach. We were unsuccessful (I am beginning to think there is no beach here for as many times as we have tried to get there and not actually arrived) but we decided we were going to the house to love all over Kristina and Jason. Poor Jason. He is in a house full of women. I would like to make a special thank you to him for simply and graciously putting up with us.

Today we woke up and got ready to have our spa pedicures. The whole group--Crystal, Angie, Kristina, Sia, Ray-Anne, Bailey, and I--sat in these amazing chairs which vibrate and massage and had our toenails painted. That was a blast.

We followed this up by taking Kristina to the movies with her friends for her birthday gift from them. For the first time, she was allowed to go to the movies without an adults prying eyes. Good for her, really bad on my nerves. Like many of you, I have a really hard time thinking of Kristina as a....a....a......teenager. Okay, I wrote it. Where did the time go? I mean, it was just yesterday I was taking Krissy to her Tai Kwon Do lessons, wasn't it?

While Krissy went to see Shrek 2, the rest of the girls came home. What followed was fun like you can't imagine. We stripped down to our swim suits and painted with finger paint using our bodies as a canvas. We called this an Indian party (or, for those more politically correct, a Native American party) and we are all now honored with an Indian name. Fun, fun, fun. I recommend this activity for everyone.

Tomorrow we are on our way to--drum roll, please--Six Flags Magic Mountain. Gonna have some real good fun. Pictures to follow.

The Oregon irritants (which are us) leave Tuesday, but I am not even thinking about leaving. Doesn't cross my mind until the minute I am on the plane going home to Devan, Abby, Colleen and my wonderful husband Kerry.

Medical Update:

The change in Ray-Anne from this visit to the last is astounding. She is up and ready to go. I love it. She jumps, skips, hops, runs, and smiles. I missed those things when I was here last. Did I mention that I love it? It is like she bloomed. Great to see. She hops in and out of the truck, in and out of the shower, all on her own. What a great thing to see.

Nothing much to report from the doctor's. But as they say, no news is good news, yes?

To Do's:

Kristin's Birthday, which I still think we should take away from her, is the 23rd of May.

Monday the 24th Jason, Alan, Liz and Yvonne will attend the Conner's Cause golf tournament.

If you haven't got ahold of Shelley to reserve your place on the boat, please make haste and do so. The event is coming up and we would really like to see you there. For those who may have misplaced it, Shelley's email is: shelley@shelleytheshark.com.

In closing, I would like to wish all of you the best. Crystal would like to say a great big thank you to you all.

Kisses, love and more,

Amy Cakebread

PS: Thanks for letting me do this, Crystal. Although I have had the most pure fun writing this entry, rest assured, next week Crystal will be back at it. Thanks again.

Friday, May 14, 2004 12:08 AM CDT

Hi Everyone,

It's FRIDAY already. I can't stand for time to go by so fast. Someone make it slow down...PLEASE!

So let's see, this week was pretty much full. Last Friday I met with Hospice. NOW...HOLD ON A MINUTE, RAY is FINE so before you get too excited let me explain why hospice is involved. My wonderful insurance company decided for some UNKNOWN reason to deny us to have Ray's lab work done at Children's and go to a different lab. At the same time our Social Worker from Children's (who by the way is a complete Angel) was encouraging us to at least get familiar with the hospice professionals then informed us that they would do labs at the house...how could we go wrong. So I met Michelle (our nurse...awesome lady too) Friday and at that time signed the paperwork to join. By Saturday she already had a wheelchair delivered and all the other things that are standard to have in a house when signed up with hospice.

I decided I would be "frank" on these journals so excuse me while I express...

I was expecting a wheelchair, some "standard equipment", and a few medications to be delivered. What I got was a wheelchair (which has an oxygen tank holder on it), an oxygen tank , 2 oxygen bottles, a nebulizer, a suction instrument and a bag of HEAVY DUTY MEDS. THIS FREAKED THE HECK OUT OF ME. I WASN'T READY FOR THAT YET. Needless to say, my Saturday was icky.

But when Michelle returned on Monday, she reassured me (multiple times) that these items are standard to have in the house once you sign up. So I think I am over my SHOCK. Michelle's visit also included us requesting a child walker and a bed for Ray. See Ray has a bunk bed. The bottom bunk is too low to the ground currently for her to be able to get up/down from and of course the top bunk is off limits. So, Michelle ordered the bed and walker and viola...Tuesday they delivered them. Ray loved BOTH the walker and bed.
We met with Michelle again on Wednesday to try to get the labs done for Thursday's appointment with Dr. Kerlin (oncologist) but unfortunately none of Ray's veins were cooperating again. So after multiple pokes, Michelle said "enough of this" (she felt so bad) and called to arrange for Children's to be able to take labs Thursday morning. Thankfully, for Ray-Anne's sake, I received a call from Michelle Wednesday evening stating that she had talked to Kerlin, and Ray didn't need labs...since she is done with radiation and we opted NOT to use chemotherapy either. We met Kerlin Thursday and he let us know that because we weren't using chemo, that he wouldn't need to see us anymore...But also reassured us that we are welcome to call him anytime for anything and we also could schedule appointments to see him for any reason. I asked when Ray's next MRI would be and he said probably (3-4 months). I asked why so long...he said because if they tell us it is growing (if it grows) we have already told them we don't plan on using the chemo (the only method left that may/may not help shrink it). Physical therapy went wonderfully.


Update on Ray:

SHE'S BACK. Full of energy. Walking, running, laughing, playing interacting with others. OH, HOW I MISSED THAT! It brings a smile to my face every minute of the day she is around.

She started her 1mg of decadron on Monday and will go down to .5mg this upcoming Monday. WOOHOOOOOOOO!!!!! As of the 24th she will be STEROID FREE!

She was weighed Thursday 13th and has already lost 4lbs since last visit so she is down to 80lbs. Her face is noticeably not AS puffy as well. Her legs don't hurt as much and her "NOSE PICKING"(side effect of radiation) is starting to subside. WOOHOOOO!!!

Other news:

Kris brought home her progress report, she is all B's. She said she is going to bring some of those back up to A's again. Have I mentioned to all of you how awesome my daughter is? She is dealing with just as much as we are and continues to be a loving and compassionate sister/daughter/friend. Stays strong (which sometimes worries me), upbeat, and keeps a smile the whole way through it. I love my girls. I am a VERY proud mommy!

Sunday (MOTHER"S DAY) we went to Seaworld. Had a very NICE time. The American Cancer Society was out there so we joined in the festivities. Great People.

I am currently playing phone tag with Protocel, so that hasn't been delivered yet. Hopefully I will get ahold of a "PERSON" today.

Ray is still doing well in her home school and still looks forward to both Mrs. Holland and Mrs. Houston to visit. She absolutely LOVES her teachers. The school is so wonderful, they have been extremely helpful and they are full of love to Ray and the family.

To Do:

We have the Celebration of Champions on Saturday the 15th. If you are interested in attending, I was told today to bring LOTS OF TISSUE. Let me know if you are coming so I can plan to meet up with you. marathon starts at 9:30...followed by Carnival and Lunch....ends with Padres game.

Shelly needs to know of all who are planning to attend the next fishing trip. She may need to make reservations on a larger boat. Please email Shelly if you need more info or want to sign up for the trip at

www.shelly@shellytheshark.com.

Jason will be attending a fundraiser Monday the 24th to golf and say a speech for "Conner's Cause". Conner's Cause has been extremely resourceful for us. They are an Organization who has helped us be reimbursed for any out of pocket medical expenses incurred and gas/mileage as well. I have gotten to be pretty friendly with an individual there that has been so helpful. She is there to answer all of my questions, as she to has gone through this herself as a mother 10 years ago.

I wanted to send A special thank you to my family....Mom, Dad, Kathy, Bree, Amber, JoJo for all you guys have done. I know it's hard being so far away. I wish circumstances were different. Please know that we think of you everyday and we will be out to visit soon. We love you all and miss you terribly. Keep strong.

And to Everyone, I can't express our gratitude for your support. I know now, that we have incredible people in our lives. We have truly been blessed.


If you scroll down further, you can hit the link to go to the mac page for the updated Disney World pics and I have also added a link to more info on Protocel if you'd like to read on the product.


Please continue to pray for or Ray of Sunshine,
The Copeland Crew

Thursday, May 6, 2004 10:07 PM CDT

We made it back, and we all had a WONDERFUL time. Mission:FIND CINDERELLA...COMPLETE! We found Cinderella within the first 1/2 hour we were in the park. We have Cinderella's autograph and pictures with Cinderella too! (Pictures of the trip will be posted shortly). Disney World is HUGE! There is no way you can see it all without having a months pass. We did manage to make it to The Magic Kingdom (which is pretty much identical to Disneyland), Epcot had us to travel the globe in 1 day (Pretty Cool Place), dinner by request of Ray-Anne at Medieval Times tickets complementary from Give Kids the World ( both girls received a flower from the Green Knight and they are very proud of that), Animal Kingdom (very humid), MGM Studios (Aunt Wendy went on the set of Indiana Jones as an extra...she received her 15 seconds of fame and mom and Kris dared to ride the Tower of Terror), Universal Studios (Ray had a blast at this park...she liked both the Jimmy Neutron ride/movie and a roller coaster...OH yeah,she really liked the water park too.) All in all the week was a total blast. Ray is already asking us if we can go back there for her birthday. We are so thankful to both Make-A-Wish and Give Kids the World we have memories which will last us a life time.

As for the Medical updates:

We met with Dr. Kerlin (her Oncologist) on Tuesday the 4th. He confirmed what Dr. Smith said and that the tumor did shrink 80hich he thought wouldn't shrink smaller than 50 He said the tumor started the size of a baseball and is now the size of a cherry. We were also given the option to start Ray on an oral chemotherapy (Temador). After a family discussion, we will not be going the route of chemotherapy. We don't want to do that to our child-especially with no guarantee that the chemo would be of any help. At least with the Radiation we were given the guarantee of some help. We are however going to start her on a product called Protocel. This is not a medical drug, but an alternative. I have found this by reading other sites of children with brain tumors stories. It sounds like maybe...just maybe...it could be what we need. A child was diagnosed with the same brain tumor and given the same prognosis, and 2 1/2 years later...he is doing GREAT along with many other stories I have read! So how can we not give it a chance?

We visited Dr. Smith today and he has given us the go ahead to bring Ray's Decadron (steriod) down on Monday. So starting 5/10 she will be down to 1mg every other day. Then the next monday she will go to .05mg every other day and that will HOPEFULLY be her last week of decadron!!!!! We weighed her today at Dr. Smith's office. Little 48lb Ray-Anne (as of 2/9/04) is now.....84lbs (in 3 months she has gained 36lbs). I CAN"T WAIT TO GET HER OFF OF THOSE DARN STERIODS!!!! The good news about the weight is, according to Dr. Kerlin within weeks she will loose most of the weight and the "BLOAT" will go away too. We are excited.

Physical Therapy...didn't go so well this week. She was tired and her "belly hurt"...so there were tears and fits. But we soon got over all that when she was told all she had to do was lay on the mat and work her legs. We learned some excercises to do daily at home.

TO DO:


I heard the fishing trip was a blast. Sia came over and was sooo excited about it. She even caught fish of her own. Thanks so much to all that attended and to all involved in making the event happen. If you are interested in going on the next trip (Jason and Kris will be going...hopefully Ray too?) it is scheduled for June 7th in San Diego. I will get more info to post, cause I know there are a few people needing more information.

We will be going to Helendale Friday night, where we will be entertained by Nawnie and her fellow Helendale Actors/Actresses in a play. Good luck Nawnie..."BREAK A LEG". I am sure we will have a great time.

We have been invited to Seaworld on May 9th (mothers day) so we will be joining other pediatric cancer patients/families from Childrens Hemotology/Oncology at Seaworld on the 9th. That should be nice.

On the 15th of May we will be joining the 9th annual "Celebration of Champions" presented by the La Playa Unit of the Children's Hospital Auxiliary. This is an event where children who have had or are in treatment will carry a "torch of life" along with immediate family members, someone famous and a sponsor will run, walk, or be pushed along an aprox. 1/8 mile lap of a relay course then pass it to the next child. They then will be escorted to the winners circle to receive a medal and picture with those who ran with them. This will be followed by a lunch and a carnival. The day will end at the Padres Stadium where all the children will be invited to home base to line up for recognition before the game begins. I am told by the Liaison, that this event will blow anyone who attends mind. So we invite ALL to come join us May 15th from 9:00am-2:00pm at the San Diego Embarcadaro to cheer all the children on. If your interested in going to the game...make sure to get tickets for that night.

Angie, Amy and Bailey will be joining us on the 20th of May. We are excited to see all of them. Ray was talking non-stop about their visit today. She is ready for the "Princess Party"...I hope Bailey is? Ray already has the WHOLE party planned out. So make sure you bring a dress Bailey.

Well, I think this will end my entry for this week. I will send out another notice when the pictures are available.

Thank you all for everything and please continue to pray for Ray and all of the children dealing with cancer.

Be sure to sign Ray's guest book (she loves to read them) and I have added a few links at the bottom of the page too.

Much Love,
The Copeland Crew

Friday, April 23, 2004 5:46 PM CDT

What a wonderful week this has been. We have just been given great news all around. First on the 21st, when we were told the tumor had shrank 80then today we went in for the swallow study....AND SHE PASSED!!!!!! Ray can drink anything she darn well wants to (with the exception of alcohol...of course). GOODBYE THICKIT!!! HIT THE ROAD AND DO NOT COME BACK! I wish everyone could have seen her when she was told she can drink normal liquids again. I havn't seen a smile that big from her in a VERY LONG TIME! The first thing she grabbed to drink was an orange soda...then a bottle of Dasani Water...then she had me stop into Taco Bell to get her a "fountain Pepsi". All of this was drank within one hours time....she is paying for it now though. She is laying on the couch holding her tummy. I am sure it was well worth the tummy aches though.

We are going to be blessed with Amy's presence again. She is coming in Saturday and will be departing Tuesday. We are all excited to see her. I was also told of another date to look forward to, we are going to be getting a special visitor in May. Baily (Angies daughter) Angie and Amy will be coming in on May 20. They wanted to fly down for Kristina's....I can't believe I am having to write this...but...Kristina's 13th Bday. Lord help me. I am now becoming a parent of a TEENAGE DAUGHTER!!!!!!!! Where did the years go?

Baily and Ray are VERY close, Ray has pretty much been "Big Sister" to Bailey and Baily a"lil sister" to Ray. The move from each other when we left Oregon to venture down to California, was devistating for the both of them, to be honest I don't think they have yet recovered. So we all are very excited to see the REUNION.


We are all counting down the days til the Disney World trip. For those who havn't been informed I will tell you what the make-A-Wish Foundations did for Ray-Anne. Ray's biggest dream is to go to Disney World to meet Cinderella. So they made it possible for her to do so. Monday we were givin the "Send Off Party" and this is what we were told:

April 27, a limo (provided by 1st class limousine) will pick us up at 4:00am to drive us to the Airport. We will then get on the plane for our cross country flight. Once we land we will then be greeted by a representative from Give Kids the World who will escort us to Avis Car Rental, where they have reserved /prepaid for the rental vehicle. We then will drive ourselves to our living quarters for the next week..."Give Kids The World". Once we get settled we are requested to attend an orientation where we will be presented with tickets to Disney, Universal, and Sea World (we have been given park hopper passes which covers all 4 parks at Disney). Our villa is 2 bed/2ba and has many accomodations. Please visit their website if you are interested in more information on Give Kids the World. Such an amazing place. We will then have the time of our lives and FIND CINDERELLA before Monday, May 3rd as we will need to leave our villa by 1:00pm to make it in time to depart at 4:50.
We will have so much fun, and we will be sure to take alot of photo's and video of the trip. If you are interested in more info on Make-A-Wish please visit their site www.makeawish-sd.org

The Poker Fundraiser in Oregon I was told was a lot fun. Thanks to all those who volunteered your Saturday for us. And to the people who came in to play, I want to Thank You as well. I hope you all had a great time.To those who put in your every spare momment (tears and all..hehe) to make sure the event happened...Thank You...I love you guys!!!!

There is still time to get your seat on one of the fishing events. If you or anyone you know is interested in looking up more info on these events please either email me or go to www.bloodydecks.com or www.senortuna.com. I want to thank Shelly (aka shellytheshark) again for her willingness to put these events together. Jason and Kristina will be joining the crew the second boat that goes out.

Girls, thanks for kidnapping me last night. I had an awesome time. We definately have to do that again. It felt really good to get out of the house, other than going to appointments.

I will not be able to send an Informer out on next Friday, but I am sure I will have plenty to write about when we return.

Thank you all for your continued prayers and support, we love you!
The Copeland Crew

Wednesday, April 21, 2004 3:41 PM CDT

Well we have received great news today. Dr. Smith (Rays Radiologist) just called to let us know that the results came back from Radiation and Friday's MRI. The tumor has SHRANK 80%!!! According to him, "the results show significant improvement, substancial decrease in size, and what adds to the size difference is that the TEXTURE even looks normal". We are sooo excited to hear this news. Radiation did a great job of trying to clear that monster out of there. What a WONDERFUL DAY!!!!

Other good news is I received a call from the secretary at the department which does the Swallow Studies, and they are going to make Ray the appointment...hopefully we can get the appointment done BEFORE the 27th. Ray is excited to hear back from them. She wants to be able to drink unthickened liquids in Florida". Wouldn't that complete her wish?

The send off party last night was nice. I can not express how thankful we are to Yolanda (Ray's Fairygodmother)and for everyone at Make-A-Wish, including all of the donators of Make-A-Wish for making Ray-Anne's wish come true. We will have a lot of fun and we will make sure we not only take pictures but be given memories that will last us all a life time.

Please continue to keep Ray in your prayers and we want all of you to know we appreciate EVERYTHING you all have done for her. The gifts,cards, prayers, visits, wishes of being well, the stregnth, hope, love... ALL OF IT! Just when you think that the world is an ugly place, you find out that there ARE beautiful people out there. WE ARE TRUELY BLESSED WITH OUR SUPPORT GROUP. YOU ALL ARE WONDERFUL!!!!

Love Always,
The Copeland Crew

Friday, April 16, 2004 7:07 PM CDT

Well today was the day, we went in for her MRI scans. I have to admit, I was really nervous all the way up to the appointment, but for some reason while the tests were happening a calmness came over me. This was a positive momment.

Ray did great today, even though they had to keep sticking her multiple times with the needles because her vein's in her arms aren't being very cooperative. (Informative Note:The needles are used because they have to inject her with "contrast". Contrast is used to allow them to "highlight" areas of the brain that are to be scanned). They finally found one vein on her hand that decided to be helpful. Ray voiced her opinion as normal to the tech's at the Imaging Center that were sticking her, but I think they took it well. We picked up the scans afterwards, but unfortunately we will have to wait for a Dr's opinion on the scans until we see the radiologist on the 19th. These Dr's really like to keep us on our toes. The 19th is a long time to wait to see the outcome of the 27 days of radiation. Dr. Jason Copeland (hehe...that doesn't even sound right)...aka Dad has done his assessment on the scans and he has determined that the area of the Pons that was of large size in the original scans on February 9th, is much larger than the scans taken today. We will definately update all of you on our findings when we get the "real" medical opinion of the scans.

This week was pretty relaxing. We did a few errands and on Thursday the 15th we went to our Hemotology/Oncology appointment. That of course started at 9:30 and we didn't get out of there until 12:00...yes it is a very long time to wait to see a Dr., especially when you have a kid that is being weened from Decadron...and still is worn out from the radiation treatment. We also attended her weekly Physical Therapy session. Kristina came with us to this visit and made sure that Ray had a good time at physical therapy. The physical therapy went fine this week...no tears.

I recieved a call from Ray-Anne's "Fairy Godmother" at Make a Wish...we have been invited to Chuck E Cheeses, Escondido to do the "Send off Party". All of you are invited to come. If you'd like to join let me know ASAP...so I can make sure we have them reserve enough space. This is tentatively set for Tuesday the 20th at 6:00ish. The 27th is coming up here too fast. Disney World here we come. Ray is going to be on mission: FIND CINDERELLA!!!!

If anyone is interested on going on the Deep Seafishing fundraiser for Ray-Anne please let me know or go to www.bloodydecks.com to email Shelly. There are actually 2 dates now. I want to thank Shelly again for all she is doing. You are wonderful.

Goodluck to my girlies in Oregon (Amy & Angie) with their FIRST try at a fundraising event. I know you guys will do great. Remember..."it's just a bunch of friends getting together for a friendly game of poker"...so DON"T STRESS. I love you guys!Call me for anything I can help with.

Well, I think this sums up this weeks informer. Please sign the guestbook, she loves to read her messages. You can sign any amount of times you like. The more notes, the more smiles we get. We have also added the photo's to her photo page (it only allows 3 photos, so we will update with other photo's later).


We love you all and thank all of you for EVERYTHING,
The Copeland Crew

Tuesday, April 13, 2004 8:34 PM CDT

Hi Everyone this is Ray-Anne. My mom is showing me my new website and how to write into here if I feel like writing to you guys. It is hard to have a brain tumor because you don't get to have what you want some times. Like soda and water. I miss you. I want to thank you for all of the cool gifts you have given to me and I want to thank you for your prayers to wish me well. i like home school because its fun. I miss school because I miss playing with my friends. I am so happy I am done with radiation. I feel different sometimes. I feel different because my eyes see double and that I cant walk up and down the stairs by myself. I am excited to go to Disney world and we are wondering when my swallow test is. I want to drink regular liquids again. I am trying to be a strong girl and not cry. Mommy says its ok to cry though. I am going to go drink my lemonade with the thick it in it and I want to play on computer games now. I love you. bye bye, RayRay!!!!

Tuesday, April 13, 2004 11:50 AM CDT

Well we have finally got a webpage set up to allow us to keep all informed on our "Ray of Sunshines" health. I will continue with the "Friday Informer" by using this site but email a reminder with the page linked to the email. We will do our best to keep all important information posted along with pictures in the album for you to enjoy. More information to follow shortly.

Thank all of you for your continued support and prayers,
The Copeland Crew

Tuesday, April 13, 2004 11:34 AM CDT

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