R.J.'s first dance .Welcome to the 7th grade ! I wish for a lot more "FIRST 'S " ...:) His recovery is like a miracle . We are feeling so blessed ! It's amazing ...The power of hope and belief ,love, prayers, and support for all that you have done to make this journey of recovery possible!
I'm happy to report we are in -healing,holding,and loving mode ! Life is so good .R.J. Has been pain free,happy,chatty thankful and egar to live. He Wants to venture out and try new things .He been so chatty and just wants to talk ..LOL...!He told dad that he doesn't have to run from the pain anymore in his mind .And now he a lot of catching up to do...:) Going into the 7th grade this last week has been pretty overwhelming for all of us .R.J. Is still very confused about school but we're confident It will work out once he's settles in .I look forward to what's next as far as his recovery . He asked me the other day (mom why do you keep looking at me and smiling like that?) I didn't realize I was...I'm just so ,so HAPPY !
It is so nice to be home and be back to work !Been given hugs and watching my son show off his battle scar with pride:) R.J. is doing so well and has NOT had a headache and the double vison is gone! He's busying playing around and laughing at his own jokes ,like a boy his age ...(SHOULD DO:) We truly see a big difference already in him and it hasn't event been a month ...(WOW)...All that pain he's indured over the course of time ....Telling us something was wrong at 7 yrs old(When the headaches started)telling me there was a bug in his head.The Doctors claiming other reasons for head pain and behavior problems and not Beging able to learn ,getting bullied in school and not being able to keep up with a simple conversation or tell us about it because he could not remember what happened when he got home nor knew how to coupe with what was happening on the inside and his surroundings on the outside all at once (With a constant headache who could ?!) Yet having to try and try and try again...though of all this ..He's remanded positive ,loving ,careing,and hopeful..Never giving up and always believing that help would come and people are good . I can't thank Dr.Kim enough for what he's done for R.J. and this family .I can't thank you all enough for donating and believing in his cure and getting us right where we needed to be .You changed a course of life...R.J.'s life ! Thank you all ! I plan to keep you updated if that's O.K. :) P.S. This was at our door step today when we got home ! Had to share :)
Hi everyone ! Sorry for not checking in with you sooner.But am gland to report that R.J. is doing wonderful / Better than ever excepted ! I know he's still in recovery but (WOW!) And I do mean wow:) He did have some nausea and a little eye pain after we were released from the hospital and of course head pain ,but only from the stitches for about the first 3 days .We laid low resting him in a hotel room near the hospital until our follow up with daily phone call's with the Doctors assistant and a care nurse from California .On Tuesday he went to his follow up appt. With Doctor Kim and his team .He was so pleased with R.J.'s recovery and we could not have been happier ! .R.J. was signing and telling jokes ,laughing and smiling and told Dr.Kim thank you for helping him and how incredible he felt(as if he had taken a heavy hat off of his head ! ) R.J. Still had his stitches and the only thing left was to have them removed witch was in another week .But after talking with the doctor he told us anyone could remove his stitches and was happy to release us for travel back to California ! :) YES! YES ! YES! We couldn't have asked for more ! He's been so incredibly happy,chatty and pain free !! Did I say pain free! Yes I did ! PAIN FREE !YES ! We decided to jump in the car and drive go see R.J.'s grandma .(My mother) It was 7 hour drive from Houston .She has not been in good health and hasn't seen R.J. other than pic's since he was 3 years old .....What a surprise and a everlasting time (memory) for them to finally hug each other .... ! She lives pure country (I mean for real! No internet ,no service,no joke !)Fresh egg's in the morning while waking up to the rooster and the rest of bunch of critters who brings a warm welcome to a beautiful mountain sky. R.J.
really got rest there .....He slept...and slept....and slept some more ..I think this is what some would call...."Stop and smell the roses kind of a time ." After the big rest ,and well needed.We headed for home ! 7 hour drive back to Houston ,Car return,and a 7 hour flight back sacramento airport where Universal Limousine was waiting as promised (donated ! ) to R.J.'s safe journey home....:) And yes we're home safe and sound ! ....When the limo pulled into the drive the house had balloons and congrats and a stack of cards waiting on the kitchen counter for him ....:) Some from Cali .some from Texas ... R.J. Slept in his bed all night for the first time since he was 7 years old ! Were still in disbelief about his recovery and the rapid progress he's made .It just keeps getting better each day ! Today he said to me. Mom do you know why they call it the present ? I said yes because it's the "now"He said /No mom,Because each day is a gift And a present is something to be thankful for ,and I'm thankful for today :) I love presents and I love everyone ! And I love you ! P.S. I'll be happy to report that his tumor was benign ! YES! YES ! YES! ...But much larger than what was measured on MRI .And had to be scrapped off of his brain stem !
Getting prepared for the big day .Its not easy .I think I'm just trying to keep busy and keep moving forward for the best possible outcome ...R.J.'s spirit is good ! He can't wait to meet Dr.Kim . That's tomorrow . Thank you all for making this happen for him ! He told me he can't wait for this monster to come out and asked if It would make his head stop hurting ..I replied what do you think R.J. / with a big sigh he answered : (mom we just got told that answer together ,you heard it too didn't you ,then smiled and hugged me :) well then that's that !
Had a amazing time with a family from Canada that is getting the same procedure done for their sweet angel ! We have been reading and following each other's story on line for sometime now ....Funny that we finally got to meet today for the first time here in Houston ,Texas .I think we were met to be here .It was good for R.J. To know that he's not the only one with this condition .
We have had a grate time so far ,the people here are very nice and the staff at the hotel have really gone out of their way to make R.J.'s stay plesant . Today was his first apointment at the hospital and things went well .So far it's a go for July9 th. :) Yesterday we took him to NASA ...It was like a dream come true for him ,all he kept saying was (WOW )and telling me things I didn't event know about Mission Control !
Wow what a day ! Since the approval happened with AnthemBlueCross .I've been running none stop . Had his last Doctors appt. (Lung function test )And a heart felt talk with his Doctor (who rocks by the way!) Then off to grab some last minute things for R.J. Before we leave ! News socks ,lose pajamas ,a new backpack so he can fill it with things to do while we're in Houston .. I grabbed hand sanitizer ,rubber disposable gloves,a neck pillow among other things ...I'm so worried about infection and him catching something ! I got Lysol wipes to take with us for the plain ! LOL ! Crazy momma boarding ! (Right) :)
Thank you all for sharing and supporting our mission ! I got a call today from a lovely voice that told me we are back on track at Atnthem BlueCross and everything's been put back into motion !!Wow,this has been one crazy ride ..I know we have more turns in the road ahead of us and our journey's not over yet ,but today came with a sigh of relief ....! Thank you for the helpful e-mails and messages /words of encouragement /and caring thoughts ! There are angels all around us,some among us and some within us,not seen by the eye but felt by the heart.Never lose hope because miracles happen every day.....Thank you for being R.J.'s angels:)
After a long and emotional day and night of crying my eyes out .My husband got me up with coffee and said we need to rest ! We can't do anything until Monday so pack the kids up we're going for a drive! While we were driving R.J. Puts his hand on my shoulder from the back seat and says to me ...Don't worry mom GOD knows I'm worth it ...Well we ended up in Lake Tahoe today and walked the lake shore ,then walked on to a boat pier ..I noticed a women wearing a blue blouse (Angels for R.J. Color )walking behind us with a gentleman . R.J. Has been feeling tingling in his right hand and foot all day ...and we've been trying to walk it off ...Dad was taking photos when they caught up to us and we the gentleman looked at R.J. And said is that your mom? Yes R.J. said ,the man replied this is my mom and we all smiled ! I offered to take there photo .we got to talking and it turns out she from Sonora,ca .she has lived there all her life .R.J. Has been pin pen-paling to a couple that lives there .I had posted the letter from them and R.J. Message (video) on the page ....I asked her if she knew them and she was surprised that I asked!YES ! She dose and they are very nice . I just about fell over /what are the odds?? So I told her why we ended up here today and about Cherri and R.J.'s letters ! She said she would be attending Cherri's Church and tell her about how we met ...We both had this feeling that we were meant to be here and that GOD has a plan.We held hands and prayed , hugged ,and she gave me words of HOPE ! ...Another sign ....I'm not giving up ! But needed to share this with you all .
PLEASE HELP -Just got the worst news of my entire Life ! It's the one thing a that I can't comprehend...? I can't breathe ! I got a call from Houston today (Friday 6-20-2014) our financial worker who was on the phone with Anthem /Blue Cross for 2 hrs.! And was told whoever Authorized my sons surgery was misinformed ! It was a supervisor from their department /The Authorization department /my husband was on the phone with them on (6-18-2014) to find out what the hold up was? They said the request was put in under my sons old policy and it was just a simple mistake and fixed everything over the phone and even gave us the approval code. so we could call Houston our selfs and give them the news ! Everything was a GO ! I'm on count down mode ...Getting thing's ready and was on my way to the store to try and get R.J some hospital socks (the things moms think about....Right..?!) The phone rings -it's Houston . R.J.'s medical insurance is not covering a DIME! NOT ONE DIME ! They said they will not cover him because he needs to go to Houston to get the help and surgery he needs ...I'm fighting ! No child should be turned away from getting the best help no matter where you live in the United States . I don't understand what's going on ! I pleading to GOD for a miracle ,and begging as a mother.....Please ,Please ,Please help and share ! I won't give up BELIEVING and need to stay hopeful and positive for my beautiful son ...who believe's in faith and humanity .
WE GOT IT ! WE GOT IT ! WE GOT IT !!!!! YES !!! YES !!!...YES ! :) What a -Huge -relieve ! R.J. 's Insurance just gave us his Authorization code for surgery.Houston it's a GO ! We are on count down mode right now .....We fly out at the end of June .We don't know where we are staying yet ? But we have been offered a room by extended family .They said their about 40 min. Away from the Memorial Hermann Hospital .I think well stay there until he's released ,then we'll get a room close buy (In case we need to get him back there for any reason ) He will need to rest and we'll have to wait for his stitches to come out and cleared before we can bring him home. So we don't know when that will be ....But I'm praying and asking God for a successful recovery .Surgery is set for JULY 9 Th../If all goes well .He will have back to back appt.'s prior to that date . "OH" The day we fly out R.J. Will be picked up by UNIVERSAL - Limousine and Transportation company (Thank you so much for donating this ride to the airport and back ! )He's going to be so surprised :)Thank you all for supporting him and making everything as enjoyable as possible for him through his journey .If you would like to write to him before we leave or after you can send letters and cards to : Angels for R.J. @ 7044 Sunrise Blvd. #A-4 Citrus Heights Ca.95610 . Thank you...R.J.'s mom :)
Feeling thrown back ! Got a call from Houston / Wow! R.J 's insurance still hasn't approved his surgery !! So I have to wait to hear from Houston ,they're working hard on this for us ! Why would it event be a issue ? Is this not AMERICA ! R.J. Has double vision and is in constant headache along with a long list of symptom's right now that NO CHILD should have to endure if there is a treatment option and a doctor that is willing ....And knows what he's doing!! No matter where you live in the U.S.A ! My son has suffered long enough .I'm not taking NO any longer.Their is nothing stronger than / A parent's love for their child / Please comment if you agree !
If your around town tomorrow please come join us and meet R.J. And get that car washed! I know his page has been all around the world and we are thankful and know we are blessed with love and support ! Thank's and much love to you all !
Hi everyone ! There been so much going on lately we haven't had a chance to check in ! RJ was a trooper today .We spent to whole day at the dentist ,getting X-rays and 2 filling,and a teeth cleaning .The dentist was booked out for a while ,but fit us in to make sure we were good to go to Houston and RJ would be able to recover without any dental apt's after he gets home and has time to recover....Called Houston about our insurance and they said..IT'S A GO ! I'm so relieved ..(I didn't want to stop traffic ,but I would have,you know what I mean .)We have a car wash on Friday that the community is putting on for RJ and we will all be washing our harts out! I can't say thank you all enough for caring and the support we have received ! I think we our in Gods hands !
Submitted to Make A Wish Foundation after talking to a dear friend . We are waiting for a response back. Meanwhile ,I asked RJ ....RJ if you had one wish ...what would you wish for. He replied to get this tumor out! I said RJ that "is"going to happen .So I asked RJ is there anything else you can think of that you would like, his response to me was yes there is Mom I would like - World Peace! (So proud of my son.)
Explanation to RJ's page: I was told at first to set the limit low. At 10 thousand. Which would barely cover our traveling and lodging expenses once we get my son to Houston for surgery. On a payer ! Nick from news 10 came and did our story. He did his own research. He talked to our doctor.. The amount we were asking for was low. Barely asking for our cost of flight and lodging. But now we have to focus not only on our travel and lodging expenses, we were told that we have have to focus on surgery and recovery expenses. We are not asking for more than we need. We have a long journey. I at this point with everything going on right now thought it would not be a good idea not to keep upping his go fund me page. just throw it out there and stop taking advice from the page itself ! I am so thankful and so grateful for what has been given,you have no idea been crying my eyes out! I'm o.k. If his page stays where it is! I'm so thankful for the donations that has been given,hopefully ill be washing cars this weekend ! And will think of other things I can do /sell / or work for ! Any other help or idea's would be grateful ,people are telling me I will need to take time off work for his recovery ,their right I know ! This hope came so quick and the fight for hope was so long..I'm into the new chapter of (OH MY GOOSHHH!!) Thank you all for the support and positive thoughts ..My hart is open and willing!
Loomis boy with rare brain tumor needs help to get operation
A Loomis boy with a rare brain tumor needs the public's help to get the operation he needs. (Wednesday, May 14, 2014) News10
Nick Monacelli, News10 11:18 p.m. PDT May 16, 2014
(Photo: Courtesy of Janice Kahaunaele)
LOOMIS – R.J. Kahaunaele may be one of the most confident 12 year olds you'll ever meet, especially considering he has a brain tumor most surgeons won't touch.
The 6th grader has a pineal gland cyst, a growth, right in the middle of his brain. Surgeons all across California have been too afraid to remove it.
"(I get) headaches, double vision and stabbing pains in my eyes," R.J. said "Sometimes really bad pain starts to show up everywhere."
He was just 7 years old when those extremely painful headaches began. Double vision, uncontrollable twitching, muscle spasms and more followed. About two years later, a MRI found the pineal cyst.
"It makes it hard to move, and it makes me real dizzy," R.J. explained.
RJ's family, particularly his mom Janice Kahaunaele, have taken him to neurosurgeons across California. All said they couldn't, or wouldn't, operate.
"It's very frustrating, when your child is suffering, and you can't do a damn thing about it," Kahaunaele said through tears.
The only thing she could do, was not take "No" for an answer.
Through a support group, Kahaunaele found Dr. Dong Kim, director of the Mischer Neuroscience Institute with the University of Texas in Houston. He reviewed R.J.'s case, then called Kahaunaele and said R.J. is a perfect candidate for surgery.
A YouTube video posted by Kahaunaele shows how ecstatic R.J. was to hear the news, saying through a smile, "The doctor from Houston actually agreed to take my tumor!"
The Kahaunaele Family was on a high after finally finding someone that can do something. Then they realized, they can't afford it.
"At first, people would try to give us money, and I would say, 'No, no it's okay.' Then my husband said, 'You're not doing this for you or your pride, you're doing this for our son,' and I have to get passed that," Kahaunaele explained.
MRIs show RJ's cyst is growing, so they're worried how bad it will get if it's left and continues to grow.
To get to Houston, Kahaunaele has started a GoFundMe page in hopes to raise $10,000.
A Loomis boy in need of brain surgery met his first goal to raise $10,000 for medical expenses. Now, after getting overwhelming support from the public, the family has set a new goal of $20,000. (Thursday, May 15, 2014) News10
R.J. was able to raise more than $14,500 by Friday night thanks to support by the public. The Kahaunaele Family increased their GoFundMe goal to $20,000 due to the overwhelming support they received by donors and News10 viewers.
In reality, they'll need much, much more.
"Please, please help," Kahaunaele begged through tears. "He's the sweetest boy. He's honest, he's loving, he's my world."
Choking up himself, R.J. added, "If you can just help me get this thing out of my head, I'd be the happiest person ever. And you could not make anybody this happy."
Dr. Dong H. Kim, MD
Add to my saved list
As director of the Mischer Neuroscience Institute (MNI) since October 2007, Dr. Dong H. Kim leads the clinical neuroscience efforts for the Memorial Hermann Healthcare System as well as The University of Texas Health Science Center at Houston. Combining the strengths of an 11-campus hospital group with 3,600 patient care beds and the academic resources of the UT System, MNI provides the most specialized treatment available for diseases of the brain and is a national leader in research for new treatments.
Dr. Kim is noted for his research into the origin, development and treatment of brain aneurysms. He leads basic science efforts, such as identifying the genes that lead to an inherited risk for aneurysms and genetic changes in brain tumors, and translational projects that directly affect clinical practice. He has been honored with numerous awards and was named to America's Top Surgeons, Marquis Who's Who and Who's Who in America. He is the recipient of grants from the National Institutes of Health and the American Stroke Association and has authored studies published in journals such as Nature Genetics, Brain Research, International Journal of Cancer, Neurology, Neurosurgery, Journal of Neurosurgery and Genes, Chrom, Cancer.
Dr. Kim is a graduate of Stanford University and the University of California, San Francisco (UCSF) School of Medicine. After general surgery training at Harvard, he completed his neurosurgery training under Dr. Charles Wilson at UCSF. He went on to complete a fellowship in cerebrovascular surgery and skull base tumors with Dr. Arthur Day.
He has held faculty and hospital appointments at Harvard Medical School, Brigham and Women's Hospital, the Dana-Farber Cancer Institute, Cornell University Medical College, The New York Hospital and Memorial Sloan Kettering Cancer Center.
Dr. Kim specializes in the following diseases:
Intracranial aneurysmsBrain tumors, benign and malignantArteriovenous malformations (AVMs)Skull base tumors and meningiomasCarotid diseaseTrigeminal neuralgiaChiari malformations
Update this profile
This is RJ 's angel !
We are so thankful for all the positive support RJ has been receiving ! Thank you ,thank you ! Thank you ! RJ is so grateful and has a very positive attitude. He has learned to never give up and keep on believing in hope. There is always believers out their and sometimes it's hard to find them but trust me there their. The Kahaunaele's !
(Believers) Mom,Dad do you believe me ...? Yes son we believe you ....! Mom,Dad why won't the doctors believe me...? They're nonbelievers now son,but don't you worry...Mom and Dad will make them believe ...! Mom,Dad why are going to see that doctor when we already know he's not a believer...? Because son we have to step over him to find believers ...! Mom,Dad are their believers out there...? yes son and we will find them...! Mom,Dad when we find them will they help me...? Son don't ever stop believing that they will...! Some day they will reach out to you and help you O.K. Son...! O.K. Mom,Dad I do believe you...:)
Hello viewers. We are here because my son R.J has a rare brain tumor located in his pineal gland. We discovered this 2 years ago. Long before this he was displaying symptoms such as sleep apnea, numbness in his hands and feet, painful migraines that concluded in vomiting, confusion, and memory loss. After discovering my son was officially diagnosed with a brain tumor through an MRI our family has fought for help. We have fundraised for funds and have seen every doctor under the sun. All of which, said that they could not help my son. This brain tumor is just too rare and in the worst spot in the brain. This brain surgery seems to frighten most doctors, so they have made multiple excuses, false explanations, and seem to just want to manage/treat his symptoms instead of addressing his brain tumor that's causing his symptoms. After years of trying and failing, we finally came across Dr. Kim from Huston, Texas. We sent him our years of paper work, medical records, and R.Js MRI's and brain scans. After we thought all hope was lost, this surgeon called us on Wednesday May, 7th 2014. He had personally called us to say that R.J is a perfect candidate for tumor removal and that his symptoms have gone on for far too long. My son has suffered. Dr. Kim made our dreams come true when he said he wants to do surgery on my son. All our hard work and fighting to get my son help finally paid off. Dr. Kim would like to do my sons surgery in July 2014. We are overly greatful for this man. So we hope for help/ donations to make this surgery possible. Everything donated will go directly to R.Js medical, travel, and lodging expenses.
I have a cyst on my Pineal Gland too, and have had two brain surgeries over the years. I'm happy to be donating to a cause so close to my heart. I wish you strength, comfort, and support to get well quickly!
Campaign Not Ready
There's an issue with this Campaign Organizer's account.
Our team has contacted them with the solution, it's a simple fix!
Please ask them to sign in to GoFundMe and check their account.