Raven Phoenix Watson
January 7, 2004 - December 23, 2009
On December 23, 2009 Raven’s Journey began anew in Heaven. Surrounded by the light and love of her Father Cameron and Family, Our angel Raven Phoenix Watson transcended into the Eternal Light of Heaven. Her last days were spent in the loving care of the George Mark Children's House and the Angels who make the George Mark house possible. Her Passing was peaceful and she felt no pain. Cameron and Family are forever grateful to George Mark Children’s House for making such an unnatural experience a loving one.
Raven is survived by her loving Father Cameron, Mother Tabitha, her Grandparents Kathleen “Grammie” and William “Grampy” “Grandma” Gail and “Bobu” her "Sissy"Jacqueline, “ Bro” Sebastian ,and her little sister Kathleen “Katie” , Aunt Regina and Uncle Kenny , Aunt Shelly, Uncle Sean and Aunt Mandolin , her cousins Zoë Micah and Jerusha , and countless others whose hearts have been touched by Raven Phoenix.
The Butterfly
He had her there, resting on the palm of his hand for a while.
She was all he ever wanted.
Sometimes her wings were closed.
Motionless.
At other times, she spread her wings open in the bright sunshine,
displaying her colourful patterns.
He truly loved her.
She knew that.
He told her she was special and beautiful, he saw the beauty.
He appreciated her true colours.
But he couldn't keep her.
He knew that.
She was born to fly.
She had been beautifull in his hand, but in flight she soared.
In the garden amongst the colourful, sweet-fragranced flowers.
Her habitat.
Free.
In letting her go, he made her happy.
But she was always to remember his warmth and his love.
Always and forever.
For all of eternity.
Raven's gift to this world is a life changing love. I encourage all who have been touched by her gift to come and celebrate her life with Cameron and her Family.
A funeral service will be held Saturday January 9th at 1:00 pm
The service will be held at Lafferty Smith Colonial Chapel 4321 Sonoma Highway Santa Rosa Ca 95409
After the service there will be a celebration of her life at Sonoma Mountain Village, The Plaza Room, at
In Liu of flowers. Cameron encourages you to make a donation to George Mark Children’s House in memory of Raven. Raven and our family were able to stay at the House during Raven’s final days and we would like to help the House provide this support to other families in the future. Donations can be made on line through the website: www.georgemark.org. There is a link to the donation page and a place for you to specify that the donation is in Raven’s memory. Personal checks can also be sent to George Mark Children’s House,
There will soon be a link posted to a website that celebrates the life of Raven Phoenix Watson.
This site was created so that those of us who hold Raven Phoenix so dear to our hearts can follow her progress as she continues to fight!!!! Raven began her fight on August 28 2008 when she was rushed to Childrens Hospital Oakland. Four year old Raven was admitted to the Pediatric Intensive Care Unit in liver failure. She had high, unexplained fevers, low blood counts and labored breathing. After many tests, including bone marrow biopsy, we learned that Raven has a condition called HLH.
What is HLH ?
HLH, or HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS, is a rare, very serious disease that affects children. It starts when a virus, usually Epstein-Barr Virus invades the body and triggers the body to produce white blood cells that attack the functional cells of the of the blood and destroy a childs organs and Central Nervous System.
There are two types of HLH, a viral (secondary) type and the more serious (primary) genetic type. Raven has the secondary type.
The Treatment
The only hope of saving Raven is a bone marrow transplant. Until a suitable match can be found, Raven remains on a grueling regimen of super-high dose steroids, cytotoxic chemotherapy and immune suppressing drugs to keep the devastating effects of HLH at bay. The side effects of these medications are many, some serious. Daddy Cameron has become an awesome nurse, managing her complicated med routine and caring for a central venous catheter at home.
The Transplant
The hardest part of the journey lies ahead. A donor has been found, and once Raven returns from
DISNEYLAND
(courtesy of the MAKE A WISH FOUNDATION ~ Thank you!!!!!!!),
the process will begin. The marrow will be harvested from the donor and the stem cells exctracted. This will be processed and eventually infused directly into Raven's blood stream. The stem cells will lay down within the bone and mature into new marrow, resulting in essentially a brand new immune system.
Before this can happen, Raven's own bone marrow must first be destroyed completely. High dose chemotherapy and sometimes full body radiation are used. This process is called conditioning. It usually takes five to ten days for the conditioning process to complete, during that time Raven will be the sickest she has ever been. She will be unable to make new blood cells, clot her blood or fight infection. This phase of the transpant process is very, very scary. There are many potential complications, sometimes with terrible outcomes. Raven will undergo lots of testing to make sure each of her organs is strong enough withstand conditioning.
Once conditioning is complete and the stems cells from the donor have been infused, we will wait for signs of engraftment, which means the cells are becoming bone marrow and performing the functions of normal marrow (like make blood cells). If the transplant is successful, the HLH may go away and Raven with be cured!. If the disease comes back or the stem cells don't engraft, then she has one more try. The doctors plan to harvest extra marrow from the donor just in case.
Raven with be in the hospital for several months after the transplant. From there she and Cameron must relocate to Oakland, since she must be close to Childrens Hospital at all times per the Transplant Team. She can't go to school or be around other kids for a year after the transplant. She will need lots of support.
The Raven Watson Foundation
Raven's strong little personality is shining through all this darkness. Raven is doing her part fighting this awful ,often fatal disease.,fighting gracefully. This has already been and will most likely be a long and rough road for Raven and her family. PLEASE! anyone who can help Raven and Family, in anyway possible whether it be volunteering time, donating resources or financial donations. We need all the help we can get!!!! Raven will need in home supportive care upon leaving the hospital. Cameron (dad) must stay home with her - this will have a sizeable financial impact on the family. Hiring outside care will also be costly.
Pro Transport-1 , a Bay Area medical transportation company based in Cotati , along with family and friends are sponsoring a trust fund at Exchange Bank for Raven and Cameron during these intensely difficult times, in hopes of supporting her recovery. If you are interested in donating time, money, or materials, Please contact Liza at 707-304-4579 or Sean at 707-843-9801 . We ask anyone whos lives have been touched by Raven Phoenix Watson to surround her and her family in the light of love and the warm embrace of your hearts.
| Rohnert Park |  |
6290 Commerce Boulevard Rohnert Park, CA 94928 |
707–584–7300 |
The Raven Watson Foundation : Acount1080033697. If you have any problems with contacting the bank please do not get discouraged. Contact Liza at 707-304-4579 or Sean at 707-843-9801 and we will make sure your donation gets where it needs to go. Thank You to all of you who have donated thus far!!!!!!!!!!!!!!
If you can donate your time to help with events that we are planning to help raise money for Raven's care, if you have goods or services you can donate for a silent auction, or you just want to help in anyway possible please Contact Liza at 707-304-4579 or Sean at 707-843-9801 . Thanks everyone for keeping Raven and Family in your hearts!
UPDATE: November 7, 2008
Raven went home today. when I told her how excited I was for her she replied " Yeah you and me double" I just talked to Raven from home. She called to sing happy birthday to her Aunt. She was doing a puzzle with her sister . When I asked Raven what she liked best about being home she said "being with Sissy"
It will take 6 -8 weeks to find a donor who matches. At that time Raven will return to the hospital for a Bone Marrow Transplant. In the meantime family and friends are focusing on keeping Raven comfortable. Please keep thinking positive thoughts for Raven. Tell someone a funny story about her, if you know any. Send this website to someone. Raven and family can use all the positivity we can give them. There will be a Pasta Feed and Silent Auction to raise money for Raven's in home supportive care . Tentatively this will be just after Thanksgiving. I will post the info as soon as it is definite. If You are interested in selling tickets or helping in anyway please contact Sean at 707-843-9801 for more info.
Update November 11,2008
Daddy explained to Raven that she may be in the hospital for Christmas this year and she said that was so she could have lots more Christmas's to come. Isn't that something else? This little 4 year old has got to be hands down the strongest person I have ever known. Raven took it easy this weekend. She spent time with the family, and Taz. Satuurday she went to see Madagascar 2 with Mom and Sissy. Raven requested a fire so she spent some time in front of the fireplace. Raven also asked to go Xmas shopping so she could pick out gifts for the family. Wow!!!!!
Today November 11,2008 ,we received some good news ,the Make -A- Wish foundation will be sending a team out this week to grant Raven's wish. We are so grateful to them for giving such a wonderful gift to our Raven. They will interview Raven to find out what her wish is. Hmmmmmmm? what could it be ?Do I smell a Princess?Tommorrow Raven goes to the hospital for Chemo this usually leaves her pretty wiped out. Please keep thinking positive thoughts for Raven!!!!!!! I will update later . Love to all .
Cameron received a letter from the Natinal Marrow Registry today . They have found a number of possible matches for Raven and are sending a list to her doctors for further screening.
Thank you Childrens Hospital Oakland! Home of the BEST doctors and nurses in the world. Thanks for your dedicated care ~ we share our journey with all of you... thank you!
Thank you to all those who have contributed to Raven's Fund. In these tough times it really means so much that people are sharing what little they have to ease this little Family's burden. Thank you !!!!!!!!!!!
Update Dec 19, 2008
Raven has been very busy over the holidays thus far. She had her picture taken with Santa on a fire truck!!!!!(see pic below) Raven went to a X-mas party at Uncle Sean and Aunt Mandy's house with the whole family. Raven asked for a rattle for Katie and an "Ear pod" for herself. Katie got her rattle but we had a hard time finding an "Ear pod" so we found her an Ipod instead. Make-a- wish is taking Raven,Katie,Mom,and Dad to Disneyland. Ravens Doctors have decided to give her Cord Blood instead of Bone Marrow they believe that she will benefit more from this. Please keep Raven in your thought and prayers.
Cameron is still at home taking Care of Raven. This is very hard financially on the family . Raven has an insatiable appetite caused by the steroids that she is taking. Please if you can help with any donation during this time of giving please see the bank info above or contact sean at 707-843-9801or Liza at 707-304-4579 .Thanks to all who have reached out to this family in their time of need.
Please keep this family in your hearts and prayers!
_______________________________________________________________
Update: Jan 08, 2009
Raven turned 5 yesterday. She and Daddy spent the night together at childrens hospital. Raven had to have her pic line catheter (broviac} replaced. This Child is my Hero. I am in AWE!!! I am in awe of the strenghth and courage that Raven posesses.
Raven's Doctors have again decided to go with a bone marrow transplant. They have a very tentative match at this point. Cameron will meet again with the Transplant Team on January 22 to discuss plans for the transplant.
THE FAMILY WOULD LIKE TO THANK ALL WHO HAVE DONATED MONEY TO RAVEN'S FUND !!!! WE HAVE NO WAY OF TRACKING WHO SENDS WHAT TO THE BANK . SO WE THANK YOU ALL!!!!!!THANK YOU ALL FOR YOUR PRAYERS!!!!!!!!!! THANK YOU TO THE COTATI LION'S CLUB FOR SPONSORING THE PASTA FEED FOR RAVEN!!!!! INFO FOR THIS EVENT IS LISTED BELOW.
Even if you can't make it out you can still have a shot at the door prize. Raven will be in the hospital for 80- 100 days after the Transplant. Let's do what we can to ease the family's financial burden and share a meal together and celebrate the strenghth of this beautiful child!!!!!
UPDATE FEB. 8
The spaghetti dinner was a hit!!!!! Thank you to The Cotati Lions and the Cotati Fire dept. for making this all possible. A very special thank you to the Zimmer family for the support of our family for all these years. Words cannot express nor convey the gratitude we feel!
Thank you all for coming out to support our family!!!!!! The love and support from the community has been such an amazing gift.
Feb 10, 2009
Raven and Cameron were picked up in a limo and taken to the airport today.Disneyland here they come. Raven and her dad made a deal that when they hit the ground Raven was the BOSS! Sources say that she held him to this , and then some. Grandma Gail and Baboo met up with Raven and her dad in D-land to celebrate Grandma Gail's b-day. Happy b-day belated G-MA Gail. I wonder who had more fun Cameron or Raven ? Thank you so much Make -a-Wish for making Raven's wish come true!!!!!!!!!!! The trip was a much needed moral boost for everyone.
Feb 16
Raven was admitted today to begin the process of conditioning her body for the transplant. Her spirit is strong but she is a little cranky from being monitored poked and prodded. She is eating and playing still despite the meds being administered. She is receiving this week the first two of 3 drugs given during the conditioning process. Raven's Treatment team are amazed how well she is responding to the drugs.
Feb 24
Yesterday they began to administer the last and most powerful of the chemo meds. Raven's appetite has diminished and she is vomiting and weak. These were anticipated side effects of the drug melfan. Raven will be given IV nutrition until her appetite comes back. She wil have a couple of rest days before the infusion on the 26th.
PLEASE CONTINUE TO PRAY FOR RAVEN AND FAMILY AS THE JOURNEY CONTINUES.
LOVE TO ALL!!!!!!!!!!
Mar 16
Raven is officially considered engrafted!!!! This means thatt her body has accepted the transplanted cells and begun making cells of her own. She has had some complications like fever ,stomach pain,and difficulty breathing. The Doctors have seen and expected most of these side effects.Raven is fighting!!!!!! Dad is there Taking real good care of her.Raven is surrounded by all of her Family and Friends in person and in spirit. Raven sleeps alot and does not have much of an appetite yet.The morphine that she is on for pain makes her very tired and probably is affecting her appetite as well. I apologize for not updating more but things are very busy round here. Thank you all for continued support for this little family. If you can remember to bring Raven and her family to your thoughts and send them a mental hug!!!!!!
Love to all!!!!!!!!!
May 12th.
Great news Raven and Cameron got to move into a transplant apartment, its right around the corner from the hospital and is a very nice place and its QUIET.
July 2nd.
Bad news Raven is back in the hospital whith some type of infection. Raven's infection is GVHD which stands for Graft Verses Host Disease.This disease came on the day before they were sheduled to come home,and the doctors have had a very hard time diagnosing this because of all the medication that she is on, 21 pills a day and two IVs. The doctors feel it will take another 90 to120 days before they can come home.(This update was posted 7/24/09.)
Please pray for them they are at a point where they really need your prayers.
I waited until now hoping to have better news about Raven. She still is fighting her disease, but is having more complications.
She has been going on 5 weeks without food by mouth although they started giving her watered down juice, saltines and plain white rice in small doses this week.
She developed a staph infection in her new line and it seems to be responding to the anti biotic. Then her Epstein-Barr flared up again and her count has risen from the usual 500 to 1000 to over 6000.
When she first was admitted to the hospital a year ago it was at 10,000 and she developed the HLH. They have a powerful new drug which she gets this evening to knock it out. This is where all your prayers come in.
We are going to see her Sunday with Katie, her baby sister and bring her back her fixed up computer (thanks to David Frendo)
She does have an email account now thanks to her Grampy-it's ravenwatson5@gmail.com.
I have been sending her e cards and she has fun opening them.
She has a whole village of SpongeBob Lego sets that take up the whole window seat in her room. She and her Daddy work on them together. I will be taking pictures and having them available online of her and her room decorations.
Thank you for your caring words, thoughts and prayers.
Gail and Bob
Berlin-Grous (Ravens other Grandparents)08/28/09
The news is not good at this time. The fungal lung infection Raven has is called Aspergillosis. There are different kinds but because of her transplant this one is called aspergillosis and it has not been diagnosed yet they have to do a cat scan and a biopsy to be able to diagnose correctley. Right now they are looking at shadows around her heart from a chest x ray and doing a cat scan shortly to determine what is actually going on. She has had fluid around her heart in the recent cat scans.
We saw her Sunday and she was very tired and didn't want to do much, but she did do a hundred piece Spongebob puzzle with Bobu. She can't have very many choices of food, but she still watches the food network and tells us what she wants when she gets better. Her spirit is still there fighting.
I ask that you please surround our precious girl in white light and all the healing prayers you can invoke.
thank you all
Gail and Bob
It's all a miracle, but she needs you all to keep her in prayer and in your healing thoughts.
Bless you all and bless Raven.
Gail, Bob, Bill and Kathy
