January has always been a difficult month for me. Cristian was diagnosed in January, on the 21st or 22nd of 2007, and Cristian passed away on January 25th, 2009. Plus there have been other personal traumatic events that occurred in January over the years, but already January 2012 is looking to be different. Yesterday, January 17, we held the private opening of Babalu and the night went really well. I felt Cristian there with me and I know that he had something to do with our success that night. It's just one of the many ways Cristian continues to bless me and let me know he's still looking out for me from Heaven. I hope that he is as proud as I am of all the changes we've made recently at the Cristian Rivera Foundation. We've revamped our website and added new tabs, informative medical content and lots of news from the DIPG community. The Cristian Rivera Foundation website is going to be a destination for all DIPG families looking for information and support. I'm so excited by the possibilities that come with being a trusted resource for the community, and I'm looking forward to this year because something tells me 2012 is going to be a year of progress. We're going to take a big step toward a cure this year; a bigger step than we've ever taken before. I feel confident now that we will see a cure for DIPG in my lifetime.

John “Gungie” Rivera
Forever Cristian's Daddy

The holidays are a very difficult time of year for me because Cristian isn't here to celebrate them. It's hard to believe sometimes that he's really gone. This week I received an email from DIPG parents who is going through their first holiday season without their son. They asked how can they go on and celebrate Christmas with their daughter now that their son has passed away. Their daughter even showed them her Christmas wish list, and the number one thing she asked from Santa is to bring her brother back.

It's heartbreaking to watch these families go through this, and it made me even sadder because of a conversation I had with Dr. Mark Souweidane. He hasn't gotten the definitive approval yet on his trial. I have become very close to Valentina Bravin's parents since I met them before the gala and I was hoping she would get a spot on the trial, but in order to be eligible, you have to be 2-14 weeks past your last treatment of radiation. For Valentina, that cutoff date is somewhere around January 6. Even if Dr. Souweidane got approval today, he would need 3-4 weeks to prepare for the trial, which cuts it very close for Valentina. I had the terrible job of calling her father, Eric, and breaking the news. It was such a difficult conversation and one I wish I never had to have.

It's my Christmas wish that we find a cure for DIPG so I don't have to receive any more of these emails or make any more of these heartbreaking phone calls. I just wish that one had come sooner so that Cristian could still be with me. I still keep Cristian's room for him and it's usually nice and neat, but with taking things in and out for the gala it has gotten messy. But lately I just can't bring myself to go in there and straighten up. I've tried over the past three weeks but it's so hard, especially at this time of year. I miss him so much. I went shopping for him the other day. It was the first time I'd been in the Thomas the Tank Engine section of the Times Square Toys R Us since I went there with Cristian, and that was three years ago. I got so emotional looking at all the new trains that have come out. I knew Cristian would appreciate them. I bought him lots of gifts, a few movies, and I'll place them under the tree for him before moving them into his room. I also bought some Thomas ornaments this year and this weekend, I'm going to buy a beautiful bow and angel to put on top of the tree.

John “Gungie” Rivera
Forever Cristian's Daddy

Gloria Garcia Castellvi, a friend of Juan Manuel who lost her little girl Alicia to DIPG, came all the way from Spain to see me on Tuesday, December 6. Gloria is very involved in the DIPG community in Spain and hosts a DIPG symposium there every February. We had a very emotional conversation. She told me stories about Alicia's journey and they brought me back to my own experience when Cristian was sick. We also talked about curedipg.org, a new platform I am forming that will have 30 DIPG foundations and families participating, pooling our resources to eventually open a cli nic where leading doctors in the DIPG community can work toward a cure. I'm excited about this new idea, which Juan Manuel will run, and I was happy to discuss it with Gloria. She and I plan to have dinner together in Spain when I go in February for the next DIPG symposium.

John “Gungie” Rivera
Forever Cristian's Daddy

Yesterday, Saturday December 3, was the first ever Cristian Rivera Foundation Paintball Tournament at NYC Paintball in Long Island City . Committee Member Robert Vazquez organized the event, which was not only a big success but also a lot of fun. Team AVS, which just happened to be Robert's team, won it all but I was on one of the teams playing that day and I could barely even get a shot loose. Each time I went to play, they got me instantly! Fulvia Lora and Ralph Mercado's wife Cristina were gunning for me. I made a few shots, but not many before I got eliminated by two very crafty women. That about sums up my career as a paintball player. I should probably stick to baseball.

John “Gungie” Rivera
Forever Cristian's Daddy

With great sadness, I announce that Heaven gained another DIPG Angel on Thursday November 17. Jordan Malave passed away at 6:30 on Thursday morning, bringing to an end his three-year battle with DIPG. He fought for an exceptionally long time and showed incredible bravery and strength in the face of this terrible disease. I had become close to Jordan and his parents, Leeana Castro and Jayson Malave, and even saw Jordan after his kindergarten graduation this past June. Jordan reminded me very much of Cristian, and watching him suffer was like living through Cristian's illness all over again. I and the entire Cristian Rivera Foundation extend our sincerest condolences to Jordan's family as we are once again reminded how horrible DIPG is and why it needs to be cured within our lifetime.

John “Gungie” Rivera
Forever Cristian's Daddy

My heart is heavy with news that two DIPG angels earned their wings, not only in the same week but on the exact same day. Octavio and Madi lost their brave battles with DIPG, leaving their parents with indescribable pain and anguish. It's so frustrating for me to read those emails. It's as if I'm reliving Cristian's battle all over again. But that's what DIPG does. It takes beautiful, amazing children away from this Earth long before their time. Heaven is filled with too many DIPG angels. I want to help the families whose children have passed away, as well as those who are still fighting, like Jordan Malave, whose health continues to deteriorate. That's why it's so important that we all work together to find a cure. Cristian's tumor tissue, which we donated after he passed away, has proved to be so helpful in DIPG research. Dr. Oren Becher from the Duke Department of Pediatrics, who has been doing mouse model work, has been studying Cristian's tumor. He saw me at the DIPG symposium earlier this year and let me know how valuable Cristian's tumor tissue has been. So after consulting with Loice Swisher, Cristian's Mommy and Juan Manuel, Lucia's father from Spain, I am glad to say that the Cristian Rivera Foundation will begin supporting not only Dr. Souweidane's research but, at a smaller level, Dr. Becher's work as well. I want to do everything I can so that children like Octavio, Madi, Cristian and so many others will no longer have to die from DIPG.

John “Gungie” Rivera
Forever Cristian's Daddy

Whispers to Heaven

Call me crazy, but I truly believe my son is my Guardian Angel. I speak to Cristian often. I speak to him when I need courage, when I feel sad, when I miss him. I ask Cris to help others all the time too. Like for my best friend, Jackie. Cris knew and loved Jackie very much, he also loved her son Lucas. Lucas was Jackie's Angel baby that passed on. I know our boys are in heaven, and I called on them to watch over Jackie's sensitive pregnancy. With the help of many prayers, Jackie gave birth to a healthy, beautiful, baby girl. I know this little princess has some of the most special angels in heaven protecting her.

I also know that I am not the only one who speaks to Cris, I know my family and friends do too, and even some of you whom I have never met. I sometimes sit back in amazement of my son. How did such a little boy, touch so many? Thank you Cris, for choosing me out of all the Mommies in the world. Thank you God, for sending us an Angel.

God promised his children eternal life. For anyone who has ever lost someone, you are not alone.
"For God commands the angels to guard you in all your ways.
With their hands they shall support you,
lest you strike your foot against a stone."
Psalms 91:11-12

The word angel comes from the Greek word, angelos; which means messenger. God is always speaking to us, only when our hearts are open are we able to hear him. I will leave you all with a poem I dedicated to Jackie on the loss of her son long before my Angel left me. Today I would like to dedicate it to Juju's Mom, Francesca.

The Cord
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Author Unknown

Love & Blessings,
Cristian's Mommy
Jenelle Asencio

This weekend I received devastating news from Puerto Rico. My 17-year-old godson, and JC and Cristian's godbrother, Joshua Melendez had his life taken much too soon. He was such a great kid with so much talent. He was very special and my heart goes out to him. I love him and I will miss him very much.

Every day I am reminded that young lives can be cut short so senselessly for all sorts of reasons. I've been getting calls from DIPG parents all over the country who heard about the Cristian Rivera Foundation and are impressed by the work we do. I talk to them and give them advice, but it breaks my heart to know that these young children have received the same death sentence as Cristian and will not get the chance to grow up. I can't wait for the day when the calls I get are not about children dying from DIPG but about children whose lives we saved through the work of Dr. Mark Souweidane.

John “Gungie” Rivera
Forever Cristian's Daddy

The past week has had a lot of ups and downs, but one thing has remained constant—my quest to cure DIPG. Everything that has happened this week has reminded me of what I'm fighting for and how important it is that I never waiver in my quest. A little boy in Massachusetts died on Friday. His name was JuJu and his mother had only recently reached out to me, so sadly I never got to meet either of them while JuJu was alive. On Tuesday I went to the wake and the funeral. It was so incredibly sad because JuJu was only three years old and yet he had suffered so much. I also got to meet another DIPG parent named Juan Manuel. He is from Spain and his daughter Lucia had been operated on by Dr. Mark Souweidane abroad. Juan and I were both at the DIPG Symposium earlier this year but our paths didn't cross. He and Dr. Souweidane had spoken about me and Juan wanted to meet me. That finally came to be on Thursday when we talked on Skype—the first time I had every Skyped in my life!—and then on Monday when he flew in from Spain to meet with me. He came by my office for an hour and then we went to eat at Il Molino. We shared stories about Cristian and Lucia. We embraced each other and cried together. We had an amazing connection even though we'd only just met and we plan to work together. Between JuJu's passing, meeting Juan for the first time and having felt that amazing spiritual encounter with Cristian on his birthday, I am reminded over and over again what this fight is all about. I'm glad the gala was so successful because it means I can be a part of something so great that touches so many lives, and even saves some too.

John “Gungie” Rivera
Forever Cristian's Daddy

The morning of Saturday September 17th, I drove for three hours to Scranton, Pennsylvania for Aimee Dickey Childhood Cancer Walk/Fun Day put on by Aimee's Army. It was a great event. After I left, I went home and changed and then drove an hour away from my home to Long Island, where Valentina Bravin's friends held a benefit in her honor. Valentina is currently battling DIPG and she is such a beautiful girl with an amazing family. I did a lot of traveling that day, but it was absolutely worth it because I got the chance to support two DIPG families in their quest for a cure. Cristian was with me that day too and he sent me so many signs—too many to name—that showed me why I was supposed to be at both events. It felt good to donate to both events, as well as give Valentina's family sports memorabilia to be auctioned off. I'm glad I was able to be there with so many other parents, families and friends of DIPG kids and angels. Once again they reminded me how important it is to be in this fight.

John “Gungie” Rivera
Forever Cristian's Daddy

Last night was the Third Annual Cristian Rivera Foundation Gala, where so many family members, close friends, committee members, supporters and DIPG families came together to remember and honor Cristian on the day before what would have been his 9th birthday. In the months leading up to this event, I had felt Cristian's presence more and more in my life. I felt him guiding me and looking out for me. I felt him alongside me, helping solve problems that would arise and show me the right path to follow. But I never before felt Cristian's presence like I did last night. When I got home from the gala, I was sitting in Cristian's room when I felt the most powerful feeling. Cristian's heart and soul merged with mine. He entered my heart so slowly that it almost hurt. I felt an amazing warmth and force of love, like nothing I've ever experienced before. It lasted 10 minutes and then he left. Rholand had told me Cristian was going to visit me on his birthday and I am so grateful he did because it was an experience I will treasure always. Cristian, I love you 10 and I am in this fight until the end. Once again you have shown me that curing DIPG in your memory is my true calling in life and I know that you are as proud of the work your foundation has done as I am of you every day. Happy birthday.

John “Gungie” Rivera
Forever Cristian's Daddy

The Third Annual Gala is less than a week away. I have been working so hard to make it a success. Each year so far has been an improvement on the last and I want this year to be the best one yet. I've been in the office seven days a week to make sure we reach our goal to not only make a great event in honor of Cristian but to raise enough money that we can give Dr. Souweidane a much bigger donation than last year.

I know Cristian supports the hard work I've been putting into this gala. He showed me with two blessings this week. One happened this morning as I was driving to NBC studios to appear on NBC's Visiones with Lynda Baquero with committee member Kenan Thompson to talk about the gala and about DIPG. The traffic was horrendous. I got on the highway and there were wall to wall cars as far as the eyes could see. So I said, "Cristian, I need you to look out for me or else I won't make it to the interview." Within a few minutes, the roads cleared up. The disabled car moved over to the side. Even though it was rush hour, there was no more traffic all the way to the front of NBC.

The second blessing happened in my office yesterday. Cristian loved Thomas the Train so much. All I wanted was to have Sir Topham Hatt at my son's gala. I tried to contact Hit Entertainment, who owns the rights to all the Thomas the Train characters, but they never got back to me. I was worried we weren't going to be able to make it happen, but then who should walk into my office but Jonathan Doucet. He was dressed in a black suit and black hat, and he was bald. He looked almost exactly like Sir Topham Hatt! I was so excited, and Jonathan has agreed to be Sir Topham Hatt at the gala. He had come to meet with someone else in the office but clearly it was fate…and by fate I mean Cristian once again guiding me and helping me. I know he will be smiling down on us on Monday and saying "All Aboard" right along with Sir Topham Hatt.

John “Gungie” Rivera
Forever Cristian's Daddy

Please take a moment today to say a prayer for young Jordan Malave.

Jordan will undergo a shunt surgery, performed by the doctor supported by the Cristian Rivera Foundation, Dr. Mark Souweidane. Diagnosed approximately 3 years ago, Jordan is one of the longest survivors of DIPG. I hope and pray that little Jordan comes out of this surgery with success and that he is able to attend the Cristian Rivera Foundation's upcoming 3rd Annual Gala, Monday, Sept. 12th, as well as the 75th Annual Gala!

Jordan's struggle with DIPG is just one example of the countless families who battle this disease every day. I ask that you support the Cristian Rivera Foundation in finding a cure for DIPG so that one day we may be able to stop DIPG in its Tracks. Soon, DIPG will no longer be allowed to ride on any children's train tracks and they can live their lives to the fullest.

John “Gungie” Rivera
Forever Cristian's Daddy

On Broken Wings to Soaring High

I may be a stranger to some of you, or some of you may have wondered where I have been? My name is Jenelle, I am Cristian's Mommy. I never left, I have always been in "my space" mourning the loss of my son and continuing his legacy in the way I deemed best. I decided that the way I wanted to help people was by becoming a nurse, so that I could be hands on with children like Cristian and families like our own. That is the way I wanted to "pay it forward", I am currently in college working towards that goal (wish me luck). Every semester when I begin a new course, the professor usually has us write a short bio about who we are, goals, etc. and I always have to re-tell my story of my life with Cristian and how he is my inspiration. I usually get looks of shock, sympathy and pity when I tell our story, and I always tell people it’s ok, don’t feel sorry for me. I will say the same to all of you who are reading this. Don’t feel sorry for us, help us. Help us help other children like Cristian and other families like our own.

John, with the help of many wonderful people as many of you well know, has created this amazing foundation. John has been "paying it forward" for the last three years, and I must congratulate him on all his accomplishments and success.

Something unexplainable happens to families when you are living with a terrible illness as well as the loss of a child. It is sad but common. Grief takes you on a rollercoaster of emotions, and once you are on that ride, reality is blurry at times. I remember sitting in the hospital, unable to control my emotions; thinking that my son had the most dysfunctional family on the planet. The doctors or nurses would reassure me that we were most definitely NOT. Most families go through a wide range of emotions when dealing with grief. According to Dr. Elisabeth Kübler-Ross (a world reknown psychiatrist) there are five stages of grief: Denial, Anger, Bargaining, Depression and Acceptance. I can honestly say I experienced each emotion and I’m sure John would agree.

John and I may not have always seen eye to eye on certain things, we may have hurt each other in the midst of our grief, but we have two very big things in common. We ADORE our son and we want to make sure we put an END TO THIS TERRIBLE DISEASE, so that no child or family has to endure what we have. Sometimes you have to put egos aside, leave the past where it belongs, FORGIVE and start anew.

John has asked me to take my rightful place in our son’s foundation and I proudly accept. Nobody can continue to live Cristian’s legacy better than us, and all of you who loved our son.

“We are like children, who stand in need of masters to enlighten us and direct us; and God has provided for this, by appointing his angels to be our teacher and guides”
-St. Thomas Aquinas

Your prayers and thoughts have lifted us up and carried us in times of despair. I thank you all from the bottom of my heart for supporting us from Day 1 and continuing to do so.

Love & Blessings,
Jenelle

Today Cristian has blessed me once again. A dream that I’ve had for a long time has come to fruition. It’s been a long time coming and when it finally launches, I will use this venture as an instrument to help our cause of curing DIPG for good. I have to thank Cristian because I know he played a big part in making this amazing opportunity happen.

John “Gungie” Rivera
Forever Cristian's Daddy

Monday, July 25 marked two and a half years since Cristian earned his wings and left this world for Heaven. He has been an amazing presence in my life, more so in the last few months than ever before. Every time a problem comes up, before I know it things are better and the issue has been resolved. That’s Cristian letting me know he’s there and everything is going to be ok. I really feel he is looking out for me and guiding me through this life until we are together again in the eternal. I miss him and love him very much, but I feel good knowing that my guardian angel Cristian is always there with me.

John “Gungie” Rivera
Forever Cristian's Daddy

On Tuesday, June 21st, I was reminded all too well that just when you think a child with DIPG is doing good, the disease gives you an unpleasant surprise. Jordan Malave, who has now had DIPG for almost three years, is starting to decline. I have been in touch with Steve Czech and I’ve asked him to contact Dr. Mark Kieran who is the doctor the Mikey Czech Foundation works with. I’ve also reached out to Dr. Mark Souweidane, who is the doctor the Cristian Rivera Foundation works with. I am determined to do everything I can to save Jordan. Each time I go through a child regressing from DIPG I live the nightmare I experienced with Cristian all over again.

Yesterday, Thursday June 23rd, I had the pleasure of seeing Jordan after he graduated from Kindergarten. Jordan is such a wonderful boy with loving parents. I will do everything to get through this temporary bump in the road. I can’t wait until the day that the only things I write in this journal are the sweet messages to Cristian and updates on how great it is that yet another child is still doing well after ten years.

John “Gungie” Rivera
Forever Cristian's Daddy

This weekend was rough for me since Sunday was Father's Day—my third without Cristian. I started the day at Sunday mass at Mary Queen of All Saints Parish in Pennsauken, New Jersey, which is near Philadelphia. I met with DIPG families who had attended the Third Annual Childhood Cancer Symposium put on by Alex's Lemonade Stand the day before. The all-day event took place at the Philadelphia Marriott Downtown and offered educational meetings and sessions for families dealing with childhood cancer. While I'm sorry I wasn't able to attend, I'm glad I got to meet with the families on Sunday. I had the pleasure of meeting Annette McKeon, who is doing amazing work for the DIPG community with her foundation, Aimee's Army. I also got to see the Griffins, who are amazing people, and the Farinas, who give a lot of support to the Cristian Rivera Foundation, as well as to me personally and spiritually. After mass, we went back to the priest's house and had pastries, coffee and great conversations. Then I drove back to New York City and picked up my older son JC. Together we visited my grandfather, who Cristian liked a lot and is getting ready for his 93rd birthday on August 5, and then we paid a visit to my father. JC and I finished out the day with a nice dinner, where we joined a couple who lost their child to DIPG too.

I was glad to spend the day with other DIPG families and remember all of the children, including Cristian, who have gotten their wings. No matter how many years go by since Cristian's passing, Father's Day never gets easier. Luckily I have some great people in my life who help get me through it. I received so many amazing messages on Sunday and I appreciate all of them. I want to thank everybody, especially Jeff Lavino, who sent me a wonderful email. Jeff is my former business partner, soon to be my partner again, and one of my very best friends in the whole world.

Cristian also played a big part in getting me through the day. He has been sending me so many blessings in the past month. I know that all of the amazing and beautiful things that have happened to me are because Cristian has been showing me the way, opening doors for me, sending me amazing blessings and filling my heart with an abundance of happiness and peace. I love you, Cristian, and I cannot thank you enough for all you have done for me and how much you mean to me.

I always write inspirational things about Cristian in this journal. It is a journal about Cristian and it's on his foundation's website. But I also want to recognize my son JC. JC is on this Earth now and has been very supportive. I see the pain he bears at the loss of his brother. I am blessed to have a son like him, who is such a great student and a good kid. JC and I have recently had some very adult conversations about life and I have been blown away by how intuitive he is. JC is not as outgoing or opinionated as I am, but I've grown to learn he is very observant and it blows me away how much he actually knows. I understand that it must have been hard for him, after years of being an only child, to suddenly have a little brother and think my time—and my love—was split between them. But I love them BOTH so much and I feel very fortunate that I got to experience love in the purest form from both of my children. I've accomplished many things in my life—I was a DJ, a concert and event promoter, a record producer, an artist manager, a record label owner, a nightclub owner, and the list goes on—but the one achievement in my life I'm most proud of is being a father to two incredible boys, JC and Cristian.

John "Gungie" Rivera
Forever Cristian's Daddy

This past Sunday, May 29, was the Prestige Productions Reunion at Latin Quarter. The event was a big success. We had such a strong turnout and the club got crowded really early into the night. It was great to see so many of my old staff members and customers come out to support the Cristian Rivera Foundation. Committee Members Stephanie Carrera and Steve Cox, who celebrated his birthday that night, were there. So was my son JC and some of the DIPG parents I’ve met and who have made a big impact on my life since starting the Foundation. Javier "Buji" Villamil’s mom Rosemary and aunt, Committee Member Fulvia Lora, were there and so were Alexander Jonathan Montes’ parents, Nereida Perez and Robinson Montes. My friends and Committee Members Tedsmooth, DJ Wreck and DJ Lucho put on a great show, along with DJ Michael Kuilan, DJ Elmer G and legendary freestyle singer Coro.

But of course it’s hard to forget that DIPG is a disease that also brings a lot of pain to the children who have it and the family and friends who love them. Days after the excitement of our event, I received a call from Jordan Malave’s mom, Leeana Castro, that brought us back down to Earth. Jordan went for an MRI and in just two months his tumor has gotten bigger and developed a lesion. I am so saddened by this, and his mother is understandably upset. She says there are no clinical trials right now that Jordan can get into, except for one that uses pills, which Jordan can’t swallow. I’m so sorry to hear this news. Jordan is a great boy, and he reminds me a lot of Cristian. I am keeping Jordan and his family in my prayers and I will do anything and everything I can to help him. Too many amazing kids are lost to DIPG, but I never lose hope that one day all of these casualties will be a thing of the past.

John "Gungie" Rivera
Forever Cristian's Daddy

On Tuesday May 17th, I attended the Children’s Brain Tumor Foundation’s Ninth Annual Dreams and Promises Gala at the Marriott Marquis in Times Square. It was a beautiful event and it was great to be there with so many other families and doctors dealing with brain tumors. Joe Fay of the Children’s Brain Tumor Foundation was nice enough to introduce me around. I got to meet some amazing people, including Dr. Jeffrey Allen from NYU Langone Medical Center, who is caring for Jordan Malave, a remarkable 5-year-old boy I met back in December. He was diagnosed with DIPG more than two years ago. I also got to see Dr. Jeffrey Wisoff, who is also from NYU Langone Medical Center. I’m a big fan of his and he was nice enough to look at Cristian’s scans for me as another opinion when Cristian was first diagnosed with DIPG. I found that many of the people I met at the gala were aware of the work we’ve been doing at the Cristian Rivera Foundation. It feels great when other people recognize the Foundation’s hard work. So many incredible things have happened lately, like major breakthroughs in research that have given the DIPG community more reason for hope than ever before. I realize more so than ever why I’m doing this. I want to see this disease cured and I am proud to have a part in the progress that gets us there.

John "Gungie" Rivera
Forever Cristian's Daddy

Another Easter has gone by; this is my 3rd Easter with out Cristian. I wish I could say it gets easier. Although he is not with me physically I know he is with me in Spirit. I look forward to the day when I can hold him in my arms again.

Today Tuesday April 26, marks what would have been Javier “Buji” Villamil 13th Birthday. Javier earned his DIPG Wings on January 4th 2010. On this difficult day my thoughts and prayers are with his parents Rosemary and Gabriel as well as with Buji’s brother and sister and aunt; wonderful committee member Fulvia Lora.

Today is just another reminder that we need to unite and FIND A CURE!! For this dreadful disease that took another one of our angels.

John "Gungie" Rivera
Forever Cristian's Daddy

This past Sunday, April 17 was the 4th Annual Walk for Health Walk-a-Thon PONTE-EN-FORMA at Roberto Clemente State Park in the Bronx. The organizers of the event, the Diversity Foundation and the National Puerto Rican Parade, chose the Cristian Rivera Foundation and DIPG as the cause that would benefit from the walk. I was happy to have this opportunity to raise awareness about the foundation and to raise some funds. The event turned out better than I could have hoped. It was great to see such an outpouring of support from Cristian Rivera Foundation committee members like Edward Caban, J.I. Starr, Tedsmooth, Elis Pacheco, Solange Osorio and Ralph Mercado III, as well as some of the newest members of the CRF family: Carlos "Keyes" Fernandez, Katie DeFlorio, Aldo Marin and Fulvia Lora. I was also honored to be joined by some of the families of children who lost their lives to DIPG, including Fulvia’s nephew Javier “Buji” Villamil, who passed away on January 4, 2010, about eight months after he was diagnosed with DIPG, and Alexander Jonathan Montes, who was diagnosed on December 12, 1997 and died of DIPG on July 27, 1998. It brought out a lot of emotion to see other DIPG families there that day and to walk side-by-side with them, as well as my friends, family and valued Committee Members, in our quest for a cure.

John "Gungie" Rivera
Forever Cristian's Daddy

Today I got a phone call from Jayson Malave, Jordan Malave's father, telling me Jordan has been losing his balance and one of his eyes has started going inward, just like when Jordan was first diagnosed. Jordan had an emergency MRI today. I went to NYU and saw Jordan and Jordan's mother. It was so hard to be there, it was heartbreaking. Jordan's last MRI showed stability and now all of a sudden this.

Tomorrow morning Jordan's mom will get the MRI results but Dr. Jeffery Allen took a quick look at the scan and said that Jordan had hydrocephalus. This means Jordan's tumor must be growing and blocking the ability of his fluids to properly drain. I am sure they will suggest a shunt surgery immediately. I hate the word shunt because of all the difficulties that Cristian had from them, for instance the shunt detaching without us knowing and causing fluid build up which caused so much damage.

I want to keep positive and hope this is just a bump in the road and once they address the hydrocephalus Jordan will go back to doing well. I have not been able to stop thinking about Jordan all day. I want Jordan to beat DIPG. DIPG's such a monster and this is one of many testaments to why we need to find a cure.

John "Gungie" Rivera
Forever Cristian's Daddy

Organizers of the 4th Annual Walk for Health Walk-a-Thon PONTE-EN-FORMA have chosen the Cristian Rivera Foundation to benefit from the event. All of the proceeds raised will go to us so that we can then give more money to Dr. Mark Souweidane to fund his research trials. I am looking forward to having everyone come out to support the foundation and DIPG research in general. It’s such an important cause that often gets overlooked. An event like this will do so much to help us reach a cure. We are offering a variety of participation packages on the website, www.cristianriverafoundation.org/events.html, some of which include foundation wristbands, t-shirts and even gift certificates from Havana Café and the Hudson River Café. The walk is on Sunday, April 17 from 10am until 2pm at Roberto Clemente State Park. I hope everyone will sign up, or at least make a donation. You don’t have to walk to donate, and you don’t have to finish the walk to make your donation count.

John "Gungie" Rivera
Forever Cristian's Daddy

On March 17, 18 and 19, I was in Cincinnati for a DIPG symposium and gala held by The Cure Starts Now. The weekend started out hectic. I missed my flight and had to go to Chicago first. But while I was there, I got to eat at Il Molino, which was one of the restaurants Cristian loved to go to with me in New York and Puerto Rico. I made it to Cincinnati the next day and attended a meet-and-greet with DIPG parents and doctors. I am so glad I went. I got to meet so many other DIPG parents whose stories I’d read about on the Yahoo and Google DIPG groups. I knew about their journeys, from the day their child was diagnosed to the day they earned their wings, so it was almost surreal to meet them in person. They all knew me though. They told me how much they loved the foundation’s website and the billboard. I realized that the Cristian Rivera Foundation has made an impression on the DIPG community because they’ve followed the work we’ve done and they know everything about it. This fuels me and pushes me to work harder because I know there are so many parents relying on me to make a difference.

It was such an amazing feeling, but nothing like what happened when I met Dr. Oren Becher of Duke University. He came over to me because I look like my son and he recognized me. He used to see Cristian in the clinic when he was still with Memorial Sloan Kettering. And then he gave me the best news I’ve heard in a long time. Cristian’s tumor, which we donated after he died, has given them some of the only cells usable in research! They’ve been able to make unbelievable progress using his tumor cells, using all of the modern technology available to sequence every gene in his tumor. Dr. Becher said only 10 samples in the world have been analyzed in this way. Now that they know everything there is to know about Cristian’s tumor, they're analyzing the data and will hopefully be able to figure out what about the tumor makes it grow.

Saturday started with DIPG parents and doctors together on one room at a symposium. When it was all said and done, the DIPG doctors from the U.S. and Europe agreed to work together and share their knowledge so that they can maximize their research and no efforts are duplicated. That night was the Once in a Lifetime Superheroes Gala and Auction. The Cristian Rivera Foundation was a big part of that because we donated a lot of great items for the live and silent auctions. We gave them baseballs autographed by Nolan Ryan and Rod Carew; a photo signed by Yogi Berra; basketballs signed by Anthony Mason and Luol Deng; a jersey signed by soccer player Jay Hernandez and a ball signed by his entire team, the San Jose Earthquakes. That’s not even all. We also donated restaurant visits for two New York City trips and a hotel stay for one of them, which earned $3,000 in the live auction. The weekend ended with a DIPG parents’ breakfast on Sunday morning and I was headed back to New York.

It was really a great weekend. It felt so good to be around so many great parents, even though we were brought together by a terrible disease. Everyone’s story was amazing and so emotional, and I was glad to be a part of it.

John "Gungie" Rivera
Forever Cristian's Daddy

Yesterday, I had the opportunity to talk with Rosemary Lora and Gabriel Villamil over dinner, who, like me, lost their child to DIPG. I first heard about their son Javier, who they used to call Buji, after Buji’s aunt Fulvia Gonzalez heard about me on the Yahoo DIPG Group and decided to reach out. Fulvia contacted me because the family lives nearby in New Jersey and the DIPG community is so small that it’s comforting when you get to meet other parents who have gone through this, especially when they are so close by. Buji had died on January 4, 2010, about eight months after he was diagnosed, and at the time his parents weren’t ready to talk about their loss. They were really taking it hard. I told them they could call me whenever they were ready, and I finally got to meet them at the second gala. Fulvia bought a few tickets, which was amazing support for the foundation. We kept in touch and after I came back from the symposium in Cincinnati, I felt in my heart I wanted to call them. I wanted to embrace them and when we met for dinner, we really bonded. They came to really open up to me and we exchanged stories about our children over dinner. We cried and it was a very emotional night, but we all had a great time. I am so glad I met them, and I’ve asked Fulvia to be part of the Cristian Rivera Foundation Committee. I know she’ll make a great addition to our cause.

John "Gungie" Rivera
Forever Cristian's Daddy

On Sunday, January 25th 2009, I lost my son Cristian to Pontine Glioma, a rare form of brain cancer that has no cure. On Tuesday March 10th, 2009 I had another painful loss, I lost my partner, my mentor, my friend, my brother and my second father. Ralph Mercado the only person in my life that truly could wear all those different hats. Ralph was more than an inspiration. He made such an impact in my life in the past, and will continue to do so in the future. Today marks two years since that fateful day. I can still remember it as if it were yesterday; I can still feel the pain that the news of loosing such an important person in my life brought me.

Ralph was the reason I decided to pursue a career in the Latin entertainment business. He provided me with the inspiration I sought out for. With Ralph I co-produced 7 successful years of tropical music concerts at Madison Square Garden. It was because of Ralph that I decided to open up my own music label, Prestigio Recordings/Sony Discos. He did advise me against it, and I didn’t listen. To date, it was the worst investment I have ever made. I should have listened.

There were people who were scared of Ralph, they had this perception that he was this impenetrable force to be reckoned with, and he was. However, I knew the other side. I saw what others didn’t; he was caring and he had a gentle soul. He would always call me to set up meetings for one reason or another, most of the time we would just end up drinking wine and talking about life. We would never really cover any ground on what the meeting had initially been for. It didn’t matter. I enjoyed every minute of it and learned so much about love, life and business from our conversations. What a better teacher than the self-made impresario of Latin music who I had the great privilege of calling my friend.

I can close my eyes and go back to December 2008 when Ralph had been released from the hospital for a short while. I remember going to visit him and his son Ralph Mercado III being so amazed at how his father reacted when he saw me. When Ralph saw me he smiled and requested that I take of my coat. All he kept asking about the baby (my son Cristian), who was in very bad condition at that time. That was the kind of man he was, the kind of man who while he was lying in bed sick he would think of others. He was the kind of man who always showed me love and inspired me everyday that I had the privilege to have him in my life.

That day, before I left, I kissed and embraced him. He was my family, my partner; words would fall short to describe the impact that he had in my life. I feel so happy that I was able to share that day with him and see him smile before he passed. Today I feel honored to have the pleasure calling his son Ralph Mercado III my partner and friend. Together we will continue to work and fulfill the legacy his father left behind. It eases my heart a bit knowing that my son is with someone I hold so close to my heart. I am sure Ralph is in heaven discussing the production of Thomas the Train events with Cristian. I know their legacies will live continue, on earth, in heaven and in all of our hearts.

John "Gungie" Rivera
Forever Cristian's Daddy

I’m looking forward to attending the Once in a Lifetime Superheroes Gala and Auction, held by The Cure Starts Now on Saturday, March 19 at the Duke Energy Center’s Grand Ballroom in Cincinnati, Ohio. I’ll be there to represent the Cristian Rivera Foundation. From what I last heard, there are 600 people registered to attend. That’s such an accomplishment and a testament to the great work they’re doing over at The Cure Starts Now to make people aware of Pontine Glioma. It’s such a rare disease but it’s so important that we find a cure. To show our support, the Cristian Rivera Foundation has donated two dinners for four, as well as two-night hotel stays for eight people, for the live auction. I’m proud to support the work of other foundations like The Cure Starts Now. Together we can all make a difference.

John "Gungie" Rivera
Forever Cristian's Daddy

Last week I received some very exciting news. Researchers at Stanford University had a major breakthrough where they were able to use tumors donated from five children—including Dylan Jewett who, just like Cristian, loved Thomas the Train—to create a model of a DIPG tumor in mice. This is amazing news! Now they can study how the tumor cells behave and they can test treatments on the mice. Using the mouse model, the team at Stanford can also identify a possible stem cell and molecular pathway for setting the tumor cells in motion. So much more information can be gained from this. We are now one step closer to curing Pontine Glioma forever. I can’t describe how happy this makes me feel. There are so many research studies going on now, including the research we are supporting through Dr. Mark Souweidane. It’s great to hear that one of them has had a breakthrough. It doesn’t matter to me if the cure comes from Dr. Souweidane or Stanford University or anywhere else. All that matters is that we find a cure and after this exciting news, I feel even more confident we will find that cure in my lifetime.

John "Gungie" Rivera
Forever Cristian's Daddy

On Tuesday, March 1st I attended a Celebration of Life for my friend Vivian Rivera, who passed away of a brain tumor on January 6th. Vivian was so courageous throughout her life. She had already fought a successful battle against breast cancer before being diagnosed with a brain tumor. She died very quickly after that diagnosis. I will always remember what a great person and friend Vivian was, and her Celebration of Life was a special tribute to the special person she was. It was really a beautiful ceremony with videos of Vivian; performances from Corina, Eric Sosa, Luis Damon and George Lamond; and speeches and poetry readings that showed just how many lives she touched. She will never be forgotten.

John "Gungie" Rivera
Forever Cristian's Daddy

Valentine's Day was always one of Cristian's favorite holidays so as much as I love him and miss him every other day, today I love him and miss him even more. I remember when Cristian was at Memorial Sloan Kettering one Valentine's Day and he wrote out little Valentine's Day cards for all the nurses. He told each one of them that she was his one and only, and wouldn't you know that little ladies man got caught. He just played it off with a smile. And he got away with it. That's something only Cristian could do. I really miss him. Today I released two heart-shaped red balloons up into the sky for him. They went so high that I lost sight of them. I'm sure they reached him up in Heaven, where he is watching over me and sending me his love right back, on this day and always.

Despite this difficult day, this week was a great one for the foundation. The concert Saturday at Lehman Center for the Performing Arts was a big success. Not only did we raise money for the foundation through some of the proceeds from the concert, but we accomplished the main goal, which was to raise awareness. Victor Manuelle and Elvis Crespo both wore the CRF wristband on stage and many of my friends and Committee Members were there to show support. Even on Thursday at the Ladies Night Out Valentine's Edition, Sisqo and Keith Sweat wore the wristband when they performed at the Theater at MSG. I'm grateful to these great artists and friends who are helping me spread the word about Pontine Glioma and, in turn, raise the money that will help cure it.

John "Gungie" Rivera
Forever Cristian's Daddy

It was two years ago today that Cristian earned his wings and went to Heaven. Cristian died at 6am on January 25th as I held him in my arms. No matter how much time passes, I still miss him and love him more than ever. He was not only my son but my best friend and he was such an inspiration to me as he fought the cancer so bravely. He never let the cancer get the best of him. Even though he is no longer with me physically, he continues to inspire me to work tirelessly toward curing the disease that took his life. I know all of that the foundation has accomplished so far is making Cristian proud. He watches over us from Heaven as he plays with his trains and is no doubt bossing people around. I look forward to seeing him again one day in the eternal but until then I will love and miss him dearly, and will not stop until I have changed the world in his name and honor. I love you Cris.

John "Gungie" Rivera
Forever Cristian's Daddy

Last week, the world lost an amazing and courageous person: my friend Vivian Rivera. Vivian was a breast cancer survivor but a brain tumor took her from us too soon on Friday January 7. Vivian was a good friend to so many people. We will all miss her dearly and she will never be forgotten. This month I not only mourn my good friend but also my son, who died two years ago on January 25th. Vivian and Cristian, you are both reminders of just how horrible brain tumors are and I will continue to work toward finding a cure. We will eradicate this disease. I know it, and I won't stop until that dream becomes reality.

John "Gungie" Rivera
Forever Cristian's Daddy

A few weeks ago, I met another little boy with Pontine Glioma. His name is Jordan Malave and he was first diagnosed with Pontine Glioma when he was only two and a half. I met Jordan with his dad Jayson, and spent an hour on the phone with his mom, Leeana Castro. Right now Jordan is five years old and after more than two years with the tumor, he’s doing well. Amazing. It helps for sure that his family has been very involved with him and his treatment. Jordan’s been on a Cuban drug called Nimotuzumab, which sadly didn’t do anything for Cristian but Jordan seems to be doing well on it. He’s had times when the tumor was almost completely inactive. But when I met him, he was showing symptoms again. He was weak on one side in his leg, arm and hand. He also has one eye that’s turning in. Those are the same symptoms Cristian had. In fact, Jordan reminded me a lot of Cristian. He was so friendly and he’s a big fan of trains, including Thomas the Tank Engine. When he came to the office to meet me, Jordan was flirting with all the ladies here. Like I said, he reminded me of Cristian. Luckily Jordan had an MRI since then and the results came back yesterday: he’s stable. I’m so glad. Jordan is a beautiful child and everyone at the Cristian Rivera Foundation, especially me, wants to help Jordan in any way we can, however we can. We want Jordan to beat the odds.

John "Gungie" Rivera
Forever Cristian's Daddy

Last month, my good friend Vito Bruno produced a concert celebrating the 25th Anniversary of Freestyle at the Trump Taj Mahal in Atlantic City. He had promised that a portion of the proceeds from the event would benefit the Cristian Rivera Foundation and this week, he handed me a $6,000 check. That really means a lot to me. $6,000 is the single biggest donation anyone has given me at one time and it's going to go so far in helping to cure Pontine Glioma. Vito knows how much Cristian meant to me and how important it is to raise awareness of this terrible disease and find its cure. He said that he'll do whatever it takes to catapult this issue into the spotlight and for his dedication and generosity, I am unbelievably grateful.

John "Gungie" Rivera
Forever Cristian's Daddy

Each day, we lose more and more children to Pontine Glioma. It's a sad fact that's only made harder now that Thanksgiving is coming, with the holiday season not far behind. I got to meet even more families whose children died of brain tumors at The Mikey Czech Foundation's Third Annual Moms For Mikey event, Comedy for a Cure. I'm so honored to have attended what was really a spectacular event at the Woodway Country Club in Darien, CT on Saturday November 20. More than 300 people were there. They enjoyed the stand-up comedy of Ray Ellin, Lenny Marcus, Brian Scott McFadden and Tom Van Horn. And they raised $260,000 for pediatric brain cancer research. That night, I had the chance to meet Sharon F. Schoen and her husband, whose son JR died of another brain tumor, not DIPG, and I met the Griffins, whose daughter Faith did have DIPG. Today actually would have been her eighth birthday, so I want to wish her a very happy birthday in Heaven. It was also an opportunity for me to spend time with Bee and Santos Farina. They've both been great people and I know they miss their daughter Meghan, who also died of DIPG, very much. They have been very supportive of the Cristian Rivera Foundation and it was great to see them, especially at an event like this that really gives hope about the prospect of finding a cure for DIPG. Mikey's parents are doing amazing work. The event was so well put together and it was a pleasure to meet both Steve and Jennifer that night. I tip my hat to them and look forward to supporting all of their future accomplishments.

John "Gungie" Rivera
Forever Cristian's Daddy

My son's gala was last week. Now that it's over, I can really look back on the hard work that went into it. We made such an improvement over last year's gala and it's thanks to the efforts of people like Annie Bonner and Belinda Aquine who helped organize it. Alex Garcia and Ricardo Cardona donated the food and were generous enough to auction off dinner for 25 people at your home with them cooking, cleaning and providing the liquor and staff. When we got so many bids for that in the live auction, Alex even doubled the offer and gave it to two people. They were amazing. So was the entire staff at the Cristian Rivera Foundation. My son meant everything to me, so it really makes me feel good to be surrounded by other people who are as passionate about this foundation as I am.

The proudest moment of the night, without a doubt, was presenting Dr. Mark Souweidane with a $30,000 check. Dr. Souweidane was in California at the time and he flew back to New York early just to be at the gala and receive his donation. I'm so glad he was able to come. It's so important that people see where their donations are going and learn from the source just how terrible this disease is and how promising his trials are. Pontine Glioma is the worst kind of tumor. It's right on the stem of the brain, so you can't operate. Within three to nine months, all the children who get it die. But Dr. Souweidane is trying to change that. He's figured out a way to deliver treatment directly to the tumor and there's a good chance that this will be the answer. Once the final totals come in from the live and silent auctions at the gala, I will to send him another check. He's going to get every penny we raise after expenses. His research is that important to me.

In the lead-up to this year's gala, all of the committee members came to my office to shoot a video, or they did videos from their home. Even though we weren't able to show that video, just the fact that they came here allowed them to gather in my office and see a video of the disease and how it affects a young child. Now they understand more than ever. They were committee members because they loved me and Cristian. Now they're committee members because they understand. They're passionate.

So many committee members have stepped up now because of the education I provided. Anthony Mason was so moved that he made us his official charity. That's an accomplishment, to instill passion in such powerful people. In fact, a lot of people have called me after the event and said that they want to continue supporting our cause because they get it now. That's why it's so important to educate people and why I'm so glad Dr. Souweidane was able to speak at the event. My only regret is that I was stuck in the office that night until after 7pm fixing a video that couldn't be shown. My heart fell when that happened. If the 400 guests and staff who were in that room got to see the evolution of the disease and what it does to a normal, beautiful little boy or girl, they really would have understood what I'm fighting for.

After the gala, I said to myself that I have to keep getting creative with methods of raising awareness, and fundraising, so that people like Dr. Souweidane can get the money they need to cure Pontine Glioma once and for all. Every year I learn more about the disease. I meet more families who are going through it or lost their children to it. That makes me even more passionate and committed to curing this disease, and I look forward to sharing that passion with the world. I urge anyone who didn't attend the gala to please make a donation. Every little bit helps bring us closer to a cure.

John "Gungie" Rivera
Forever Cristian's Daddy

This week had two special days for me when I remembered not only my son but also a close, irreplaceable friend. Saturday, September 25 marked one year and eight months since Cristian left me. It's been a hard year and eight months for sure. I think about him every day-when I go to the office where he used to join me, restaurants we used to eat in together, places I took him and places I wanted to take him but never had the time. I miss Cristian very much and I can always feel him with me.

Today is also an important day because today a very special person was born. That person has influenced my life in a way that no one else ever has. That special person is Ralph Mercado. Ralph died three months after Cristian and of the same disease. He would have been 69 today if he were still here, but I know Ralph is up in Heaven right now with Cristian, helping him produce some Thomas and Friends Shows. He's looking down on us and saying, in that way only Ralph could, "That bossy son of yours, Cristian, had better listen to me if I am going to help him do The Thomas and Friends Show or I am going to kick his ass!!" Those shows will do better than Gilberto Santa Rosa Sin Friends! I want Ralph to know that so many people, including myself, all miss and love him very much every day, but especially today on his birthday.

While it's important to take time and remember the ones we love and sadly have lost, I am also looking ahead to the next Cristian Rivera Foundation Gala. The preparation is going very well and we are getting a great response. Usually people wait until the last minute for things like this, but tickets went on sale today and already lots of tickets have been sold. That's a sign that we're going to have a great gala that will be an amazing tribute to Cristian's life and legacy.

John "Gungie" Rivera
Forever Cristian's Daddy and Forever Ralph's Family

This past weekend, the Aimee Dickey Childhood Cancer Walk/Fun Day was held in Scranton, Pennsylvania. All of the DIPG families on the Yahoo group went. I'm sad to say I couldn't make it. I really wish that I'd been there because it's a great sign of support that so many people went to Nay Aug Park to help raise money and find a cure for DIPG. Bringing so many people together for a common cause like that is truly inspiring and I want to applaud Aimee's mom, Annette, for all of her efforts.

The Cristian Rivera Foundation will do the same thing on Tuesday, October 19. That's the date we just announced for our second gala. I'm very excited. Less than a month from now, my family, friends, colleagues and everyone who cares about Cristian and this Foundation will join me at Quo in Manhattan. We'll not only celebrate Cristian's life but also raise the money that will help to one day cure all of the DIPG children I've come to know. The DIPG community is very small and everyone knows each other. I have met so many wonderful people since I started this journey and they serve as a constant reminder of what we can accomplish with this Foundation and with this gala. I'm so grateful to everyone who will buy a ticket, sell tickets or make a donation to my son's gala. Last year's event was very successful and my goal is to make this year's gala even better than the last one. Every year I hope to see growth and improvement. We can accomplish so many great things and I'm excited by the possibilities of just what this Foundation can do.

John "Gungie" Rivera
Forever Cristian's Daddy

We're in the middle of Childhood Cancer Awareness Month, when people across the country are reminded that young children are dying every day from cancer. Three hundred children die each year just from Pontine Glioma, so I can't even begin to think about how many families have to suffer through all the types of pediatric cancers out there. I belong to a DIPG group online and when I read the posts on there, it makes me sad because I know what they're going through. But that sadness is also a constant reminder that we must find a cure.

That's why the Cristian Rivera Foundation is so important to me. I'm helping to raise the money necessary to find a cure for Pontine Glioma. A cure is a promise that no child and no family will have to suffer through this terrible cancer again. To help make my dream a reality, the Cristian Rivera Foundation is having its second annual gala on Tuesday, October 19 at Quo in New York City. Last year's gala was a big success. I know this one will be even better and that Cristian will smile as he watches it from above.

John "Gungie" Rivera
Forever Cristian's Daddy

Today is a very emotional day for me because today is Cristian's birthday. If he were here, we'd be blowing out eight candles on his cake together and I would watch him open the newest Thomas the Tank Engine DVD I bought him to celebrate. But unfortunately, that's not how things happened. Today, he is celebrating his eighth birthday with all of the other DIPG kids who earned their wings and went to Heaven.

This is now the second time I have had to spend Cristian's birthday without him. Last year, his sister Brittnee and I spent the day doing some of the things that Cristian loved. We went to his favorite restaurant in City Island. We went horseback riding. We went on the yacht that Cristian had driven, and then went jet skiing with the owner of that yacht. After all that, Brittnee and I went to Saint Patrick's Cathedral and to the Apple store to get Brittnee a touch-screen iPod.

This year, I'm going to a restaurant that Cristian and I loved to go to, and then I'm going to go home and watch Thomas the Tank Engine. I signed Cristian's guestbook at exactly 12 am today, then lit a candle and prayed. I kissed Cristian's urn and I spent some time in his room. I could see him sitting there, playing with his trains, as we did so often. I miss him bossing me around and ordering me to change the engines on his electric trains. We had three sets of tracks and Cristian would interchange engines between the three tracks, as well as the cargo trains. He could have played with them for hours, and then we would end the night watching DVDs while I massaged his back, feet and underarms.

While today I can only wish him a happy birthday in my prayers and in my dreams, I know on one very special day we will be together again and he won't waste much time bossing me around. But it will be in a place free of illness and pain.

That's why it's very fitting that today is also National Childhood Cancer Awareness Day. This is a day when we call attention to the pediatric cancers that affect young children like Cristian. It reminds me that while I miss Cristian very much, the long journey we went through together made me strong and made me believe that I can make a difference in the fight against Pontine Glioma. So today I remember Cristian and all the children who have passed away, as well as the children who will be saved when we find a cure.

John "Gungie" Rivera
Forever Cristian's Daddy

Today is Valeria's birthday. I'm keeping her parents in my thoughts and prayers as they go through the difficult task of marking a child's birthday after they're gone. Sadly, they are not alone. Brain tumors of all types rob so many parents of their children, turning occasions that were once happy into something really sad. I've joined the DIPG group on Google so I hear about the children who are suffering. I read about the frustration of their parents. We're losing 5-7 kids every week to this disease and it has to stop.

My good friend and Cristian Rivera Foundation Committee Member Vic Latino is doing something to help put an end to these unnecessary deaths. He's raising awareness by featuring the Foundation in the marketing for Mega Jam 2010. It's a great event. The star of Nickelodeon's iCarly, Miranda Cosgrove, is hosting. There will be performances by Natasha Bedingfield, Kelis, Shaggy, Kardinal Offishal, Lucas Prata and many others. It's so nice that Cristian's Foundation can be part of something that puts smiles on children's faces because that's what it's about. I want DIPG children to have long, happy lives and not succumb to such a terrible disease.

Sadly, we still have a ways to go before we find a cure. For now, I'll think about Valeria on her birthday. I'm still wearing the bracelet she made for me. She asked me to give it to Cristian because she didn't know he'd already died. But I promised I would give it to him and when I see him in heaven, that's the first thing I'm going to do.

John "Gungie" Rivera
Forever Cristian's Daddy

This past Sunday was Father's Day. Even though I still have my son JC to celebrate with, it's hard knowing Cristian can't enjoy the day with us. He was definitely there, though. Two things happened to remind me of that. First, Bear Walker's friend Roland told me that Cristian would send me a butterfly as a sign. And lo and behold, I was in a meeting on Friday with Ralph Mercado and Jaison Newring and what flies through the window? A butterfly! I was so blown away. I called Roland and Bear right away to tell them the prediction came true and I made sure to scan Roland's note to show everybody. It was amazing, and so was the dream I had the night before Father's Day. It was the most beautiful dream about Cristian. He gave me a kiss that felt so real I can't believe it was only a dream. I remember the same thing happening on Valentine's Day. That tells me Cristian is watching over me from heaven and he wants me to know how much he loves me, especially on holidays like this. That's how strong the bond is between us. I cherish it every day of my life and will continue to cherish it when we meet again one day in heaven.

It's unfortunate to think about how many DIPG fathers had to spend Father's Day without their children. Or any holiday. Or any day of the week. From what I've heard, we lost six kids to DIPG just this last week. One of them in particular is very close to my heart. Danielle Rosario, who I wrote about in my last journal entry, died on Father's Day. It was so sad. Her father had called me earlier that day to say she wasn't doing well, and then later to tell me she'd passed away. In the time that he and I spoke about DIPG, we came to be friends and my heart goes out to him. It was yet another reminder of how far we still have to go before children with Pontine Glioma can have the hope of living long, full lives.

John "Gungie" Rivera
Forever Cristian's Daddy

This week, two events reminded me of both how far we've come and how far we need to go in the fight against Pontine Glioma. A friend of mine from the DIPG community named Bee Farina, whose daughter Meghan died from Pontine Glioma, put me in touch with yet another father of a child diagnosed with the disease. Larry's daughter Danielle is only six years old and she's had Pontine Glioma since November of 2009. He seemed like a fighter and even reminded me a little of myself. We talked about the different types of treatment and it was so sad speaking with him. It brought back memories of Cristian, who was Danielle's age when he died, and it reminded me that we are still so far from a cure. Doctor Souweidane's research gives me a lot of hope but, for now, children are still getting sick and still dying. I can't wait for the day when that's no longer the case. From that touching conversation, I then went to the Fifth Annual Fundraising Event put on by Voices Against Brain Cancer. That's the foundation started by my friend Mario Lichtenstein, who also lost his son to a brain tumor. He is an amazing person and he put on a great event. It was such an emotional night for me. So many memories come flooding back after talking with parents who went through the same thing I did. But it was also a beautiful event that gave me hope for what brain tumor foundations like mine, and like Mario's, can accomplish. The fundraiser was held at the Manhattan Ballroom and it had a silent auction with lots of interesting items up for bid, as well as bands that performed throughout the night. One of the bands featured Billy Joel's saxophone player and former New York Yankee Bernie Williams on guitar. Bernie Williams also hosted the event and-in a very touching move-wore the Cristian Rivera Foundation wristband at the event. The more we get our message out there, the more we can grow and the closer we can get to curing Pontine Glioma.

John "Gungie" Rivera
Forever Cristian's Daddy

On Tuesday, June 1st, I attended the 8th Annual Dream and Promise Awards Benefit for the Children's Brain Tumor Foundation at the Marriott Marquee Grand Ballroom. To have a foundation that's been around for 22 years invite me to their event and recognize a foundation like mine-one that's not even one year old-really felt good. People at the event were coming up to me, talking to me about things the Cristian Rivera Foundation has done. That tells me that they've heard of us and they're excited by what we're doing. The Cristian Rivera Foundation has been making noise all over town with our billboard, our monthly newsletters, the foundation cards we've been handing out all over Manhattan, and of course our wristbands and all the amazing people who wear them. Like Dr. Mark Souweidane and Bob Budlow from the Children's Brain Tumor Foundation, who wore their wristbands the entire night. The event gave me a chance to spend time with them, as well as Joe Fray.The people at the Children's Brain Tumor Foundation have told me they're impressed with the Cristian Rivera Foundation; that for a small foundation, we've come a long way in a short time. They've been asking me to come to their meetings and they want to get together to figure out ways for us to work together. The people from the Children's Brain Tumor Foundation have been so gracious to me and in them, I see what the Cristian Rivera Foundation can be. I see us quickly getting to the level where we can raise hundreds of thousands of dollars at one gala.That bright a future makes me both excited and proud because who we're really doing this for is the families. I was touched to hear the parents and children who spoke at the event about being survivors and thanking, in part, the Children's Brain Tumor Foundation. It also made me very emotional to hear the parents speak that evening whose children had passed away. It's something I can relate to and something I want to put a stop to. I commend all those parents who attended who had lost their children. They could have easily done what lots of parents do, which is walk away and forget. But instead they are fighting, like me. I know how difficult it is to keep on living after such a great loss. It takes courage to continue fighting this battle after some would say we've already lost. But we haven't lost. And we won't lose. I feel so strongly that we will find a cure for Pontine Glioma in my lifetime and I will never give up.

John "Gungie" Rivera
Forever Cristian's Daddy

I have been overwhelmed by the responses I've been getting since Cristian's billboard went up on the West Side Highway. I've gotten such positive feedback from friends, family and even strangers. What that tells me is what I set out to do-to raise awareness-is working. And that brings me so much joy. This billboard is something I dreamed of doing since the Foundation started and now that it's up, people are responding! The billboard has also led to people from the Children's Brain Tumor Foundation, and other Pontine Glioma groups, to reach out to me. They want me to get involved in what they're doing. They want to get involved in what we're doing. Sometimes they just want to ask for advice. The Cristian Rivera Foundation has become the talk of the DIPG community and they are rooting for us to succeed. If we succeed, they succeed. I also feel confident about Dr. Mark Souweidane and the research he's doing. Part of the reason other treatments have failed in the past is because they kill both the bad cancer cells and the good cells. But Dr. Souweidane's method looks like it only kills the bad cells. He's figured out a way to get the treatments to reach the actual tumor, which gives me so much hope. I'm proud to support him because I don't want to keep hearing stories about other DIPG kids passing away or their families suffering. I just wish this breakthrough had come while Cristian was still here because I really miss him. I miss Cristian so much, but it brings me joy to know that he's in a better place up in heaven. Maybe the plus side to his death is that it got someone like me-who has been so successful at promoting events and products all my life-to promote the message of DIPG. It's an important message that needs to be spread if we're ever going to make a difference. I look forward to the day when I can say we beat this, or at least got a step closer to finding a cure. This is something so important to me and I refuse to give up this fight until we're able to save lives.

John "Gungie" Rivera
Forever Cristian's Daddy

As I was driving into work yesterday, I looked up and saw Cristian's billboard on the West Side Highway. I couldn't believe how amazing it looked. I dreamed of this moment for so long and it was better than I had ever imagined. If only Cristian were here to see it. He would have loved it. I miss him so much, but at the same time I am so proud of what his foundation can accomplish and I'm excited for all the great things that will come from it. So many people will hear about Pontine Glioma for the first time and they will be able to help me find a cure for the disease that took my baby boy. I don't want any parent to have to miss their child the way I miss my Cristian. But at least I know that I can see his face every time I go for a drive on the West Side Highway.

John "Gungie" Rivera
Forever Cristian's Daddy

I'm very excited. Ever since I started Cristian's foundation, I dreamed of having my son and his cause appear on a giant billboard on the West Side Highway. Between my dear friend and committee member Ralph Mercado III and I and all the phone calls we made, we finally made this happen in a really hard-to-get location that we've been wanting for so long. It's going to be facing south on the north side of the West Side Highway at 132nd Street and it's going up Monday, May 10th. That's less than a week away! I can't wait to see it, and I'm excited for the impact it's going to have on the foundation. Can you imagine how many people we're going to reach who have never heard of Pontine Glioma before? This billboard is going to take us so much closer to our goal of curing Pontine Glioma. It makes me so proud that the Foundation has gotten to this level. And it will make me smile every time I see Cristian looking down on me, not only in my dreams and in my prayers, but from a big, beautiful billboard in the sky.

John "Gungie" Rivera
Forever Cristian's Daddy

As we enter 2010, I am determined to put an even greater stamp on the world through both Cristian's foundation and the strength that God has given me since his passing. I thank God for revealing so much to me this past year and giving me the strength to overcome any obstacle that has been put in front of me or my loved ones. So many people have been showing their support for the Foundation by wearing our signature blue wristband. Even Diddy wore one and it was featured in Life & Style Magazine. Though it was hard celebrating my first Christmas and New Year's without my baby, it is this support from my dear friends on Earth as well as from above that gets me through. And even though Cristian was not with me physically, he was there in spirit. I know he is proud of everything we've accomplished so far, and everything we will accomplish this year. I'm currently planning the next Cristian Rivera Foundation gala for February, and I am working with Dr. Mark Souweidane. He has had some very promising results with tests of new Pontine Glioma treatments and new ways of getting them into the body. He had great success testing on animals and is just about ready to move to the next stage, testing on humans. I am so excited to see him help other children like Cristian, who I know is excited too. It's been almost a year without my baby but that year has made me a stronger, better person and for that I am grateful.

I am starting this journal 11 months since Cristian passed away on January 25, 2009, and will continue as I did while Cristian was sick. So much has happened in that time. We had a beautiful mass celebrating Cristian's life. Family and friends filled the huge church where there were easels set up with collages of Cristian's life. I ordered a special, custom, handmade Thomas the Tank Engine flower arrangement since Cristian loved trains so much. It really was a beautiful event. The priest delivered a wonderful sermon and Cristian's sister Brittnee said beautiful words.I've also started a foundation in Cristian's name so that no other family will lose a beloved child the way I lost my Cristian. His brave battle humbled me greatly and I want to make sure that his death was not in vain. I am so confident that we will find a cure for Pontine Glioma and Cristian's name will live forever for bringing such a positive change to the world. We've assembled a wonderful committee. Ricardo Cardona is a member, as is Jim Jones, Jose Alberto “El Canario,” Victor Martinez, Raul Acosta, Little Louie Vega, Jeff Lavino, James Cotto, Vic Latino, DJ Camilo, Elis Pacheco, Anthony Mason, Fernando Ferrer, J.I. Starr, Tedsmooth, Dr. Ben Velazquez, Hamlet Peralta, Eddie Caban, William Pla and so many others I am proud to call my friends. Together we stand so tall and can accomplish so much. Our first gala was held on September 29 at Eden, where Cristian had his memorable fifth birthday party. It was such a great success and so many people were there. I know that Cristian was there too, in spirit, and that he was as touched as I was by the outpouring of support from people like Luis Guzman, Miriam Colon, Ruperto Vanderpool, Bill Thompson and Franc Reyes. Their presence meant everything to me and it truly warmed my heart.Sadly, I was reminded all too quickly of the toll brain tumors can take on a beautiful child. This November, Cristian's friend Valeria died. It was heartbreaking. Valeria was such a sweet girl. She had become like family to me and towards the end, I was there with her and her family, helping them with meds and battling with them every step of the way. I was at the hospital when she passed and cannot express how sad and painful it was to watch brain cancer claim yet another life. But I know that she has a great friend up there in Heaven with her: my brave, wonderful son. And now I am faced with celebrating my first Christmas without Cristian. Though he is not here in person, I am blessed to be able to spend the holidays with him both in spirit and in my prayers.As I write this, there is new hope for a cure. Dr. Mark Souweidane, who was one of the doctors who conducted various shunt surgeries on Cristian, thinks he has had a breakthrough. This is such great news. Dr. Souweidane is the Vice Chairman of the Department of Neurological Surgery and the Director of Pediatric Neurological Surgery at the Weill Medical College of Cornell University and Memorial Sloan-Kettering Cancer Center. He has dedicated himself to researching brain tumors like the one that took my beloved Cristian from this world. I am very excited to see where his research can go and I am hopeful that this could be the godsend we've been waiting for. Of course that doesn't mean I have given up on my own personal quest. I am always grateful for donations made toward Cristian's foundation. No matter if they're big or small, every generous gift brings me one step closer to my goal and that support is invaluable. And I look forward to the next Cristian Rivera Foundation Gala in 2010 when we will once again celebrate Cristian's short but meaningful life.

Cristian Rivera born 9/13/02 and passed away in the loving arms of Mommy and Daddy at around 6am today. Cristian's blood pressure dropped so much, his fever was so high and his heart gave up. Cristian brought so much Joy to my life and so many others. Cristian is the Bravest Boy I have ever met. Cristian never let the Cancer get the best of him as Cristian remained so happy and positive. I am so very blessed and fortunate to have had Cristian in my Life and look forward to joining him in eternal life some day, but until then, Cristian "Mr. Bossy" Rivera will be in heaven playing with his trains and bossing the Angels around. Heaven is in for a treat. Heaven will meet the GREATEST BOY.

Cristian's heart rate is very high at 195-217. Normal is 90. Cristian's fever is 103-104. We are putting ice packs on him. Cristian is on the full Vent. Cristian has gotten a lot of visitors. People from all over came to Pray for Cristian. This is heart breaking. We will continue to have Faith and Pray.

I slept in the bed with Cristian last night and noticed that he was breathing on top of the vent. Cristian is fighting, he truly is. I believe Cristian knows I am here so I spoke with Cristian and Prayed with him. I told Cristian stories of past times, how he and I had so much fun and how I can not wait for that day to come again. I told him that God is going to heal him through His Powers and/or through Doctors. Cristian felt really warm and when they took his temperature it was 102+. Cristian just got some Tylenol. Dr Bob came today to bring me the copy of Cristian's MRI, which Kenya ran to him last night. We tried viewing the MRI together, but the computers here didn't allow it. Cristian isn't in good enough shape to get worked on by Doctor Bob. Cristian is too swollen and the tumor has started spreading down to his upper cervical. The goal is to increase the steroids so that Cristian's breathing goes up and heart rate down and then Doctor Bob can commence working on getting further pressure off of Cristian. Dr Gershon was here and I asked him to show me Cristian's MRI which is accessible to him and Dr Gershon showed and explained everything Dr Bob told me.

The Vent is pretty much doing all the breathing for Cristian. Cristian had to get a blood transfusion. Many friends and relatives came from all over to show support. Although Cristian's eyes are open at times, Cristian doesn't appear to be hearing or seeing you. It is hard to see Cristian in this condition. Michelle, the Reiki Master came to do Reiki on Cristian. We will continue hope through Prayer.

Jenelle and I met with Dr. Khakoo and some of the team. It wasn't a pleasant meeting. It is hard to hear talk of the end of our son's life and preparing for it. The question was brought up again. “If Cristian needs to be put on the vent again should we put Cristian back in the vent or just let him pass?” Cristian has been on full vent and off full vent (C-Pap) 6 times in the last few days, so that's like asking us “are we ready to let Cristian go perhaps in an hour or a day?” I have Faith. I believe. How can I agree to that? Let these alternative meds kick in, let God touch Cristian. At this point Cristian's eyes are open but he has a blank expression and doesn't even see or perhaps even hear us. You can wave your hand in front of his eyes and Cristian just stares straight ahead/expressionless. I am hoping Cristian is in some sort of shock. I am going to stay right by Cristian and continue to pray for God's Healing. I Love Cristian. Nothing will stop my Faith. Nothing will stop my Love. God Bless Cristian!

Joe, Dylan's father (www.saveourdylan.net), came to visit Cristian at Memorial Sloane Kettering today. Joe is an amazing person and has been blessed by God. As you know from the past journal entries Dylan is a boy that was diagnosed on 01/22/04 with Pontine Glioma and has been healed. Joe attributes Dylan's healing to Ray, Dr. Bob, Reiki, Protocel and a strict diet, all of which Cristian was on 3-4 weeks prior to going in the hospital for the shunt revision which up to this date still hasn't come out. This protocol which Dylan was on never got a chance to show its effectiveness on Cristian. Joe spoke to Jenelle and I this morning and his story is so inspiring. We thank Joe so much for being such a messenger of God and taking time out of his busy schedule to come see Cristian.
At 9:00am I received a phone call from Dr. Khakoo, who had reviewed the MRI which was done around 8:30pm last night. Dr. Khakoo told me that it appears Cristian's tumor has increased by 25%. We are having a meeting at 3:00pm today to see how we are going to move forward and also to discuss the particulars of the MRI. It is obvious that the current treatment Cristian is on is not working. Jenelle and I spoke with each other and we've come to an agreement on what to do: we want to take Cristian off Chemo, keep Cristian on a light-medium dosage of Steroids, keep Cristian on the 4 alternative medicines (Ultimate Geo Cure #2, Ultimate Calcium, Ultimate Liquid Vitmains, Ultimate Minerals) and the stem cells, and put the rest in God's hands. Dr. Khakoo says there are no other trials available for Cristian anyway and that the only other option would be to increase the dosages of the Chemo and I am not going to allow that. We have faith that God will inject Cristian with the ultimate healing medicine (God's Touch). In the last 2 days, Cristian has shown signs of fatigue. He has been sleeping a lot, not been very alert or responsive, and incredibly swollen. This has been a difficult week to say the least.

Cristian just got his MRI. We will have results on Friday Morning. Cristian is back on the full vent and no longer on C-Pap. I appreciate all the prayers. Let's Pray for positive MRI results. God Bless Our Little Baby Boy.

Cristian's vent went from reading 10-12-14-16-18, etc… At around 4:30pm Cristian was put on C-Pap trial. Dr. Bob and Walker spoke about what is going on and both feel that the MRI, which is now definitely scheduled for 8pm tonight, is a very important one. Dr. Bob requested that the Tech that is conducting the MRI include pictures down to the level of C1 and C2 in the Cervical Spine. Dr. Bob will review the MRI and make his conclusions then!

Today marks 2 years since Cristian was diagnosed (01/22/07). Jenelle and I met with Dr. Khakoo and the Team at Memorial Sloane Ketering at 10am to discuss where we are at with Cristian and also a Move forward Game Plan. Unfortunately Cristian is back on full vent and no longer on C-Pap. Cristian is not only on full vent, but for the last few hours Cristian is not breathing at all. The vent gives 10 breaths and Cristian usually breathes 6 – 12 on top of the 10 so the vent would read 16 – 22. The vent is now only reading 10 which means Cristian is not breathing on top of the 10 at all! This is so alarming to the team at Sloane!! The meeting with the team took a totally different direction and they have ordered an MRI immediately so they can see what is going on.

Doctors Walker, Pyne, Velaquez, and Bob spoke with me today on conference to discuss a Move Forward Game Plan. Dr. Bob, as you might know from our past Journal Entries, was the Doctor that is credited for helping Dylan (www.saveourdylan.net) combat Pontine Glioma. Dr.'s Pyne, Walker and Velaquez feel that Dr. Bob is Key in Cristian's quest to recovery. Dr. Bob has agreed to visit Cristian and work with him outside of his office. Having Dr. Bob on board and doing personal visits with Cristian is incredible news! In the meantime Cristian is now on C-Pap. Sloane called us and set up a meeting for Thurs 01/22/09 at 10AM with Dr.Khakoo and the team to discuss where we are at with Cristian and a Move Forward Game Plan.

Cristian was moved to Memorial Sloane Kettering's POU-(Pediatrics Observation Unit) where they hope to soon start doing C-Pap trials, perhaps on Wednesday. C-Pap is when the vent is solely assisting Cristian's respiration, but Cristian would be pretty much breathing on his own. Prior to the episode on Sunday 01/18/09 Cristian had been on C-Pap for quite some time now and it is what St.Mary's is equipped to handle. Sloane has decided to keep Cristian at Sloane since Cristian is scheduled to have an MRI on Thursday 01/29/09 and even if by Monday 01/26 Cristian would be well enough to go back to St Mary's, it wouldn't make sense having to transport him back and forth again. It usually takes Cris an entire day to settle in after being transported, his heart rate and breathing rate usually goes up for a while. I guess Cristian gets excited from being transported. Dr Pyne and Velaquez came by during the evening hours to visit Cristian and were very happy to meet the special little boy they have been helping and will continue to help. Both Pyne and Velasquez gave Jenelle and I information on the 4 products, the stem cells and the special blanket that they bought for Cristian and the positive effects they will have on Cristian. The special blanket is called Earth FX and it puts negative Ions into the body (grounds the body back to the frequency of the earth). Basically when the body has inflammation it wants to ground itself because it wants more negative ions to bring down the inflammatory factors. Bringing the inflammatory markers down is important because Cristian is swollen/inflamed. Afterwards Cristian's long time friend FunkMaster Flex came by to see Cristian. Pyne, Velaquez and Flex all said they saw a bright light in Cristians eyes and a strong desire to Live. Dr. Pyne, Dr. Velaquez and Dr. Walker are committed to helping Cristian using highly potent zed, ionized, frequency charged vitamins and minerals that are optimally absorbed into the cells for improved cellular function including the increase of ATP which is a way of measuring energy in the cells. In addition, we are using non human, embryonic stem cells to boost the immune system, specifically telomerase (a telomere is a region of repetitive DNA at the end of chromosomes, which protects the end of the chromosome from destruction), and also to improve the cellular function. It is our hope and prayer that these healing modalities are effective in helping Cristian.

Cristian was in and out. His heart rate went up and down but for the most part he showed improvement. Doctors think his Trach might have caused Sundays episode. Cristian continues to be on his Alternative Meds. Jenelle has been giving it to him because the hospital won't. As of Sun, Cristian has a one week break from Chemo. I emailed Dr. khakoo asking her about lowering Cristian's Steroids dosage and asking why Cristian is so swollen. We continue to stay positive. Cristian has so many people pulling for him through Prayer.

Cristian was pretty out of it all night and at around 4am this Morning Cristian's Beautiful Brown eyes were wide open and he seemed to have a lot of his color back, Cristian didn't seem as pale as he did at St. Mary's or when he was first brought into Sloane. After the test, they ruled out a flu and will continue to run more tests. Cristian's White blood cell count is off and he doesn't seem to have the proper count to combat infections, etc... They just poked him (OUCH!!!!!!!!!!!!!!!!!!!!!!) to get more blood for further testing since the blood is cloting from his Mediport. Cristian seems alert and his eyes are wide open. Cristian no longer has the ability to nod or smile. The only way to communicate is through asking him to blink, if what you have asked him is what he wants or feels - TV, Massage, does Cristian have Pain, is he ok, is he happy someone is there, does he want to watch a movie, which movie etc... We have to get to the bottom of what happened yesterday. We are hoping that indeed it was an infection, because then we can rule out any Tumor progression or activity which caused this to happen; which would then be a totally different playing field. Cristian continues to win his struggles and We continue to have Faith. Everyone's prayers are Fantastic. Thank you for your support. Dr Walker, Dr Pyne and Ben Velasquez have been GREAT! The Nurse Staff at Cornell and the entire staff at Memorial Sloane Kettering have also been GREAT!!! Thank you. Today is a New Day, full of Hope and Faith. God please continue to Bless our Baby Boy who has brought so much Joy to so many people and continues to do so!

Cristian's heart rate was high all day and his oxygen level was very low. Cristian looked pale and wasn't the same alert boy he was the last few days. We had him taken to Sloane Urgent Care and he desatted really low, both in the Ambulance and at Sloane. This is so scary to see 8 to 10 people working on our Son, getting his breathing back to normal. We were then sent to Cornell ICU, where Cristian will be put back on a Vent. Cristian appears to have a Viral infection. Cristian has a lot of stuff showing up in his lungs according to the chest x-rays as well as his nose. Doctor Walker came to see Cristian at St Mary's and within the hour an Ambulance came to take him to Sloane. My Mother and Aunts and Cristian's buddy KC also came to see Cristian today. We have hit another bump in the Road to Cristian's healing and I will not let this bump shake my Faith! Cristian has Angels around him!

I went to St. Mary's and Cristian was in school. When I asked Cristian if he liked being in school Cristian blinked yes. Dr. Walker came by my office and brought me water blessed from John of God, the healer from Brazil. Dr. Walker's friend, Heather Cumming (who wrote a book on John of God), has been in touch with John of God about Cristian and Dr. Walker is going to mail a picture of Cristian so that John of God can pray for him.

Cristian's heart rate was very high this morning. It usually is high in the mornings, I will ask what they attribute this to. Cristian's energy seems better.

I stayed overnight with Cristian. Cristian no longer nods his head. Cristian still smiles from the right side of his face. Cristian's energy is a bit better. As of today, Cristian is getting 2 dosages of stem cells daily. Michelle came over and did an hour session of Reiki.

Dr. Walker came with someone that does Reiki, Diego Urrea. Diego did some Reiki on Cristian while Dr. Walker did a check up on Cristian. Afterwards Dr. Walker, Myself, Jenelle, Deacon Michael and Marianne (who is in charge of medical services/GI and Nutrition) met and discussed the stem cell option. Jenelle and I agreed to try it and it has been started today. On Wed 01/07/09 the meeting with Dr. Khakoo was an upsetting one which wasn't filled with much hope and the following day 01/08/09 God brought us Dr. Pyne, Ben Velaquez and Dr. Walker, who are helping Cristian at no charge. Dr. Pyne and Ben Velaquez are friends of a long time friend Kamar Delosreyes, www.kamardelosreyes.com, who is also one of the founders of the Gabriel Project, www.thegabrielproject.com, which is a not for profit foundation that provides life saving heart surgery to a child from an area in the world where such surgery is not available. Dr. Walker is a friend of Dr. Pyne and Ben Velaquez. God is Great. Please continue to pray, Prayer is strong. I believe that Cristian will get better!

My Dad, my Brother Jonathan, Silvia and Cristian's Brother J.C. came to visit Cristian today. I spoke with Dr. Pyne and Dr. Walker a few times today. Dr. Walker wanted to know how Cristian's energy was. The last few days, Cristian's energy seems the same. Dr. Walker and I have been speaking about the possibility of Cristian going on a stem cell treatment in addition to what he is on already. Dr. Walker ordered the stem cells on Friday and they should be in by Monday.

Dr. Walker picked up Cristian's medical history today and will review everything before Monday's scheduled visit.

We had a family meeting today at St. Mary's. Decon Mike, Dr. Yadoo, Marianne Mazza, were present. Dr. Yadoo wanted to make sure Jenelle and I are on the same page in regards to what we should do if Cristian should go into respiratory distress again and/or if Cristian's situation worsens. It was a similar meeting to the one we, Jenelle and I, had on Wed 01/07/09 with Dr. Khakoo and some of the team members. I made it very clear that I wasn't prepared to make a decision yet and I informed them about the Vitamins, Minerals, Calcium and Geo cure that Dr. Pyne and Dr. Walker put Cristian on. Dr. Walker is scheduled to come see Cristian Monday between 3pm and 5pm. Dr. Walker needed Cristian's medical history, which I received today. In the meantime Jenelle is continuing to give Cristian all four of the vitamins recommended by Dr. Walker.

My long time friend Kamar Delosreyes has been telling me about some products which studies are being conducted on and getting incredible results. In one case someone with a brain stem tumor was given just a few weeks to live and that person's tumor is now gone!! Today I met with one of the doctors and spoke to another one over the phone who developed the products on a conference with Jenelle. The products, which Jenelle and I have started giving Cristian today, are Ultimate Geo Cure #2, Ultimate Calcium, Ultimate Liquid Vitmains, Ultimate Minerals. These four products should help the cells in Cristian's body become active as well as rid themselves of toxins (revitalizing the cellular structure). This will ultimately help the body to fight the Tumor. Both doctors are going to study Cristian's medical history and go over a move forward plan that would allow him so many GREAT options that aren't available elsewhere. You have no idea how we feel right now. There is new hope. God is Great!!!

Jenelle and I met with Dr. Khakoo and a few members of the team. Basically this meeting was to get Jenelle and I on the same page on what the hospital should do in the event Cristian goes into respiratory distress again. Basically they want us to make a decision whether we want Cristian back on the vent or to just let Cristian pass. This is so hard to hear and so hard to even accept. The Doctors want Jenelle and I to consider Cristian's Quality of Life. Is it fair to keep Cristian alive in the condition he's in because perhaps Jenelle and/or Myself want to keep him with us? At this point Cristian can barely nod his head. Cristian doesn't speak, swallow, move any part of his body or breathe without assistance. Cristian is communicating with us by blinking his eyes. It is hard to get him to smile. I believe that at this point Cristian DOES NOT have the ability to move his head as much as he did a few weeks ago or smile the way he did a few weeks ago. I am sure Cristian still wants to smile, but I don't believe Cristian can physically do these things. I would like Cristian to get another MRI which is scheduled for Thurs Jan 29th. If there is Tumor Progression then it will make it easier for me to make a decision. Cristian was always so active, affectionate and so full of life. I don't want to see Cristian suffer anymore but if there is another decrease in tumor size after the next MRI then there is hope. As long as Cristian is alive and has the willpower to live there is always HOPE. God will make that final decision. I pray to God that He grants our Baby Boy Healing! So many people love our baby, Cristian, Please Pray that God puts His Healing Hands on Cristian!! Today when I asked Cristian if he wanted me to lie in bed and hold him Cristian nodded prominently, YES!, Cristian smiled and was so happy that I laid in bed with him. I also massaged Cristian's feet, which makes him happy. God please save our son!

We spoke to Dr. Khakoo who feels Cristian is stable enough to go back to St. Mary's. Jenelle and I are against it because we feel he should stay a few days to make sure that his breathing doesn't become unstable again. Jenelle and I have a meeting Wed 01/07/09 @ 9am at Memorial Sloane Kettering with Dr. Khakoo and the team to discuss where we go from here. It has been almost 3 months since Cristian has been hospitalized. It was Friday October 17, 2008 when Cristian went in for the shunt revision. Cristian was eating, speaking, laughing, playing, ordering trains, surfing the net, watching his DVD's but not walking. We had Cristian on Protocel for approximately 3-4 weeks and Cristian was seeing Dr. Bob, Ray, on a healthy eating regiment and having Reiki. These are all the things Dylan, www.saveourdylan.net, was on. We felt we were on the right track. Friday October 17th was a major setback. I believe in Miracles and I ask all of you loyal family and friends to join in and Pray that God heals our Baby Boy. This is so difficult and so hard on Cristian to be in this helpless position. This is also so hard on us to have to stand by and watch. God please, please, please save our baby. I will serve you humbly for my entire life!!!

Cristian's breathing rate stayed low for almost the entire day. Cristian is handling the C-Pap very well. It appears that Cristian is leveling out and becoming stable.

Cristian was put back on C-Pap trial today. Cristian's breathing rate was up and down.

Cristian was on the vent for the entire day. Cristian appears to have an infection in his lungs.

At around 2AM Cristian was put on C-Pap trial. Cristian did well but then had to be put on the vent again because his breathing rate went up very high again.

Jenelle called me to inform me that Cristian is having too much trouble breathing and they are going to rush Cristian in an Ambulance to Cornell. Cristian might have to go back on a ventilator.

Cristian had a lot of visitors today, my Grandfather, his Brother JC, my Aunts, some of my Cousins and many of my childhood friends. I spoke to one of the doctors at St. Mary's who informed me that Cristian is getting weak and is having trouble breathing so they will raise the setting of his C-Pap from 8 to 10. This wasn't the news I wanted to hear. I want Cristian to get off C-Pap all together and totally breathe on his own.

On my way to St. Mary's to spend the night with Cristian, I called my uncle Fito in PA and Fito was in church and put me on speaker phone where dozens of people prayed for Cristian. It was beautiful. I am hoping 09 brings Cristian all the health and happiness he deserves.

Jenelle and I counted down the new year with Cristian. I then spent the night with Cristian. There is no place I would rather be than with Cristian on New Year's Eve. Cristian seems to be breathing fast and his heart rate almost doubled a few times during the late hours.

Jenelle and I opened Cristian's gifts for him and read him his Christmas cards. Cristian hasn't been the same. Cristian looks tired and sad. We try everything to make him happy but I guess Cristian is very bored because he has seen all his almost 100 DVDs over and over again and we have read all his books to him. You can just imagine how such a lively and active 6 year old feels having a trach, not being able to move or speak and experiencing constant pain in his stomach from his feeding and meds and constantly having headaches. It breaks my heart to see Cristian this way. Cristian has lost almost all his hair at this point and his face and body are very swollen.

Both Jenelle and I spent Christmas Eve with Cristian. We watched TV. At times Cristian is breathing fast and his heart rate is high.

Cristian had his MRI today at Memorial Sloane Kettering. Cristian's last MRI was on 10/16/08. Pontine Glioma is a brain stem tumor, “the tumor is located in the Pons.” After the doctors reviewed the MRI the Pons area looks smaller which leads the doctors to believe the tumor is also smaller, but when the MRI is reviewed when contrast was given, the tumor area appears brighter.

Cristian had a pretty calm day today. Cristian did complain about stomach pains. Friday morning join us in prayer as Cristian goes back to Memorial Sloane Kettering for an MRI. We need to pray for good results.

I called Dr. Yadoo today and he was concerned about Cristian's belly being distended. Cristian has been having severe stomach pains. Cristian has been gassy and retaining stool. Dr. Yadoo has increased the amount of myrilax so that his bowl movement can increase. Cristian is also on a new formula which is more elemental and easier for him to digest. Overall, Cristian had a good day and nothing out of the ordinary to report.

Cristian is getting physical and occupational therapy mon thru fridays. We are hoping Cristian can regain use of his body. He sometimes goes to his rehab on a special wheelchair/ carriage/ stroller that is designed for kids like him.

Jenelle asked me if I have been hearing the noises coming out of Cristian's Trach. I said that I have and Jenelle says that the noises are Cristian using his vocal chords , trying to control them and perhaps trying to speak. I sure hope and pray that he can speak to us again. Cristian didn't have a good day today, his heart rate was high all day.

We meet with the entire team at St. Mary's to go over Cristian's game plan / expectations, and basically just to get acquainted with each other. Cristian was then moved to a private room, he seems to be comfortable in the private room. I got a phone call from St. Mary's late this evening to notify me that Cristian had some labs drawn and that St. Mary's called Dr. Gilheeney because his hemoglobin was low. Dr. Gilheeney wants Cristian to be transported back to Memorial Sloan Kettering for a blood transfusion and to run some test on Tuesday morning.

I went to see Cristian today and we watched Madagascar part 2. I massaged him and took a nap with him. Cristian says he isn't feeling well. The staff keeps giving Cristian morphine for the pain. Cristian keeps saying he is having pain in his head and his stomach. Cristian doesn't seem to like St. Mary's. Cristian is sharing a room with 4 other kids. Cristian seems really sad. Cristian is also having difficulty with his breathing. I am very worried. Cristian's face is really swollen. Cristian seems to be retaining water. I just want Cristian to get better so we can take him home. Once he is home I would like to continue his alternative / holistic approach. I will not stop believing that my son can get better. Thank you for your support and prayers.

Cristian was transferred from Memorial Sloan-Kettering to St. Mary's rehab today. The game plan is to get Cristian strong enough so that he can go home. Cristian is still on a partial vent. Cristian is on C-Pap. Cristian is on 25%, which means Cristian is basically doing most of the work.

Cristian was supposed to be transferred to St. Mary's rehab today but wasn't. The 1st Ambulance they sent over didn't have the proper respiratory equipment and by the time the 2nd ambulance came it as too late to admit him to St. Mary's.

Cristian is doing better. Cristian is on 35% C-Pap. Cristian is only on partial vent. If Cristian continues to do well, Cristian can be transferred to St. Mary's as early as Wednesday 12/03/08. I have never stopped doing research and continue to do so. I have many things that I would like to try, but need to get Cristian home.

Cristian didn't respond well during the attempt to wean him off the ventilator. Cristian seemed to be out of it and slept a lot today. He complained of headaches and was given morphine for the pain. We are hoping the reason Cristian hasn't come off the ventilator quicker is that Cristian is taking a while to recover from the anesthesia, which Cristian normally has trouble with. Cristian has had trouble with anesthesia after past surgeries. We want to thank you for your continued support and Prayers

Cristian had surgery today to put the G-tube in. During surgery Cristian was on the ventilator to help him breath. The surgery took approximately 3 hours. The G-tube procedure is a Beach Ball like valve that is installed into the stomach in order to feed him and give him his meds. We were hoping that after the anesthesia wore off that Cristian could be taken off the ventilator, but he wasn't able to be taken off. Cristian complained of pain after the surgery and was given a lot of morphine. The doctors will attempt to wean Cristian off the ventilator Thursday.

We are awaiting the G-tube surgery which will take place Wednesday at 7 a.m. Nothing major to report. Cristian has been is good spirits. If all goes well with Cristian's surgery, Cristian can be at St. Mary's rehab facility as soon as Monday and after a few Weeks of Cristian being at St. Mary's, Cristian can then go to our home.

Nothing much to report. Cristian has been in good spirits. We are hoping Cristian will have Surgery soon. This procedure has now been postponed two times. I have been spending a lot of time lying in bed with Cristian, resting, reading books to him and watching his favorite DVD's with him. I try to bring him 3-4 new DVD's each week to add to his already large collection. We miss having Cristian home.

Once again Cristian's surgery was postponed. The Doctor conducting the surgery doesn't feel Cristian is strong enough to have the surgery. It is a catch 22, because Cristian isn't getting enough nutrients from the NG-tube and is getting weaker and the G-tube will get the nutrients to him to make him stronger yet he needs to be stronger before having the surgery to make him stronger. Incredible!! Please continue to pray. My son needs all the support and prayers through prayer anything is possible!!

We met with the surgeon that will be conducting the G-tube surgery today in order for us to fully understand the procedure. The procedure will consist on cutting close to Cristian's belly button, but on the left side of it in order to have no complication with the shunt. The surgery will take 2-3 hours. Cristian is due to have the G-tube surgery Friday 11/21/08.

Cristian is better and isn't showing any signs of exasperating. I bought Cristian many new DVD's and we watched them, I also slept with Cristian. I read Cristian a few books and did my normal massage therapy. Cristian really seems better. Cristian seems very alert, very responsive and as close to himself as ever since after his surgery on Friday October 17th, 2008, which was the beginning of these respiratory problems.

We were watching Cristian really carefully because it would be really bad if Cristian exasperates and his vomit goes into his lungs.

Cristian exasperated today. This isn't good. We have to get his G-tube in as soon as possible to prevent this. When someone with a trach tube exasperates, they can choke on their own vomit.

Cristian Temperature was low today and cultures had to be taken. Cristian had to have his Mediport reaccessed. It took 3 tries to get his Mediport reaccessed. This was so hard for me to watch and even harder for Cristian. Cristian does not communicate so he cries silently and you can see the pain on his face.

Cristian was supposed to have surgery to have his G-tube put in. Due to Cristian's Chest x-rays and possibly having pneumonia, the surgery has been postponed until further notice. This Journey has not been easy. We want to thank everyone for their support and prayers.

Cristian was moved late this evening back to Memorial Sloan-Kettering. Cristian is no longer considered an I.C.U. patient. This is a step in the right direction.

Cristian got his foot braces today. This will keep his feet straight. Cristian will also soon get a hand brace for his right hand.

Cristian is Alert and isn't sleeping at all. I don't think Cristian is getting more than 2-3 hours of sleep combined in a 24 hour period. The Doctors think Cristian might be suffering from Post Traumatic Stress. Cristian is also getting physical and occupational therapy and continues getting his chest exercises.

Today Cristian had a pretty good day. He seemed to be more alert. The doctors have him off the sedation. His chest x-rays seem ok. We bought decorations and had a super hero come visit Cristian plus take pictures with him. Cristian had been getting his Etoposide + Valporic Acid. Etoposide is an chemotherapy and Valporic Acid is an anti seizure drug. This combination ( Etoposide + Valporic Acid) is being trialed on another young patient at Memorial Sloan Kettering who is responding nicely. Our hopes are that the Etoposide + Valpori Acid can stabilize the tumor until we can figure an alternative plan and shrink it so that some of his symptoms can be reversed. All the prayers and support is overwhelming and appreciated.

Cristian had a Tracheotomy today. This will enable him to breath without the ventilator. The procedure went fine and Cristian has been pretty much out of it. Cristian is not alert. Cristian is sedated. Cristian's chest X-rays are still fine.

Cristian has done so well with the C-Pap test. Normally they are conducted for 30 minutes every 4 hours but Cristian has even gotten some for 45 minutes and even an hour. The doctors felt that he did so well on the C-Pap test that it was time to extabate him. Cristian was extabated and lasted 30 minutes without support of any kind, so he had to get the mask and went 90 minutes while on the mask. We had to make a decision whether to intabate him or not. We intabated him. Today was such a major set back. My baby cannot breathe on his own. The doctors feel that the disease Pontine Glioma has disabled his ability to breathe like it has disabled him to walk, affected his eyes and right arm. This is so hard for all of us. Cristian is now intabated and sedated. Jenelle and I have decided to allow Cristian to get a trach. Doctor Howell feels strongly that Cristian will be able to breathe with the trach. We will not give up our faith.

Cristian was very alert today. I read books to him, massaged him and we watched his favorite dvds. Cristian seems to be doing very well with the C-Pap test. I was with Cristian 8am to 2pm and again 8pm to 8am Sunday night.

Cristian had many visitors today. One in particular which made him very happy was my brother Jonathan. Cristian isn't very responsive. They are still running C-Pap test. Today I read Cristian a few books and put a few of his favorite dvd's on.

Cristian is still pretty unalert. He is still doing well with his C-Pap test. They do a chest X-ray daily and its seems to be ok. Cristian has alot of secretion. Cristian is constantly being suctioned.

I saw Cristian for 3 hours today. Cristian is pretty much the same. They are running C-Pap test every 4 hours for 30 minutes Cristian seems to be tolerating the test. We are hoping that Cristian can be extabated and can breathe on his own. Before I left I called Ray, my uncle Fito, my uncle Nestor and my cousin Hector and they all prayed for Cristian over the phone. I put the phone next to Cristian's ear. So many people are calling, texting and e-mailing to get updates. Cristian is very much loved. Your prayers and support is appreciated.

Cristian's surgery appeared to go well. Dr Soweidane straightened out the loop in the tubing from the shunt. The doctor did not have to do an incision into Cristian's head, just another incision in his belly area to pull the tube down. This is the 4th shunt associated surgery Cristian has had, 8/29/08, 9/12/08, 10/17/08 and 10/22/08. I Called Ray and Ray prayed for Cristian over the phone.

Dr.Soweidane said that the Catscan is showing a loop on the tubing coming from the shunt. Cristian will have to go into surgery in a few to rule that out, as the cause of the problem, Cristian is having. There doesn't appear to be excess fluids building. So, it appears that the fluids are draining. But this will rule any possibility of it not working. I put some holy water on Cristian which came from La Guadalupe in Mexico and some of the oil that Ray the healer gave me that came from the painting of Jesus Christ's mother that weeps oil. It is 4pm and Cristian just went into surgery. Lets join in and pray hard that this procedure will correct the problems Cristian is having.

Jenelle Text me a little after 12 noon to hurry to the hospital because Cristian was working too hard to breathe and they didn't know how long he could keep it up. This was horrible. I was so worried when I was driving to the hospital. I rushed over and when i got to the hospital Cristian's breathing rate was between 50 and 80. He shouldnt be past 30. Cristian was alert and when I looked into his eyes and asked him if he saw me, Cristian nodded yes. I asked Cristian if he knew I loved him and also nodded yes. I asked Cristian if he loved me and he nodded yes again. Cristian's eyes looked either sad, tired or worried. This was heart breaking. Cristian is suffering so much. We had to put him back on the breathing tube. This is such a major set back. This is heart breaking. Cristian was sedated and the tube was put back in. Cristian opened his eyes a few hours after the breathing tube was put in. Cristian's sister Brittnee came and Cristian respondea guy and healer and Ray prayed for Cristian over the phone. WE WILL NOT GIVE UP OUR FAITH.

Cristian had many visitors today. My uncle, Pastor Fito and his wife along with another Pastor and his wife came to pray for Cristian. They came from Philadelphia. It took them over five and a half hours to get here. Nothing stopped them. They arrived five minutes before visiting hours were over. Ester's uncle Pastor Rivera also came by earlier. I want to thank both groups for their beautiful prayers. Cristian had to be put on a partial breathing device which is not as bad as the tube. Cristian's right lung looks sort of deflated or collapsed. Cristian still has alot of fluid in his lungs. These things concern us all. Cristian has been out of it and not responsive as yesterday. Later Sunday night Cristian eyes opened and responded to me. His eyes were set on the tv so I asked Cristian if he wanted to watch cartoons and Cristian nodded yes. I put on Goofy. Cristian watched tv for almost an hour while I massaged his feet. Afterwards Cristian fell asleep. We need all the prayer and support. We just want Cristian to wake up fully and be strong enough to breath on his own and come home.

Cristian is off the sedation in order for him to be able to wake up and the doctors can then try to take out the breathing tube so Cristian can start to breathe on his own. The waiting room was packed with Family, Friends and Loved Ones. Later that evening Cristian had the tube taken out and is breathing pretty much on his own. Cristian is still very much out of it. Cristian also has alot of flem in his lungs. Cristian started opening his eyes towards the end of the day and even started talking a little bit. Overall I am pleased with Cristian's progress. My Uncle Nestor and cousin Rafael came to pray for Cristian as well as Ester, Gus and Eileen. I want to thank them all for their continued support. God is the ultimate healer and through God all is possible.

Cristian had surgery today. The doctors had trouble with the procedure, the Third Ventriculostomy and had no other choice but to just fix the Shunt. Cristian's first two surgeries only took approximately one hour. This time around Cristian was in Surgery from approximately 4pm to about 8pm or so. When Cristian came out of Surgery he was having trouble breathing on his own so Cristian needed to have a breathing tube inserted. This is so hard on us because there were no complications with the first two surgeries. After Cristian got the tube put in they transported Cristian to ICU across the street at Cornell. Cristian has many people Praying for him. This is just a bump in the road which we will overcome.

Today Dr Khakoo called me and said that Cristian's Port doesn't seem to be working properly. This is the 2nd time that the port wasn't working properly and the 3rd time Cristian is getting the same surgery.This is frustrating. Dr Soweidane called me and said that we are either going to fix the malfunction of the port or go with the other option that we originally discussed called the Third Ventriculostomy . Cristian will be admitted today and will have Surgery Friday. I went to the hospital and Cristian was in good spirits. His speech was slightly worst, and he wasn't too active. He cannot really move his legs or his right arm too well. We are all very concerned. At the hospital Cristian had me and Kenya both massaging one foot each. One things the same, Cristian is making it very clear to us that he is still the Boss. Everyone who Loves Cristian are praying and have all the Faith that Cristian will be ok.

Cristian couldn't go to his Chiropractor or his Reike appointment today. His mother said he had a headache. I called Cherly at Memorial Sloane Kettering and Cherly said she spoke to Jenelle and that Cristian's headache went away. This worries me. Jenelle will take Cristian to see the team on Thursday.

Cristian and I had a great day. Cristian's spirits are good but he isn't very active. Cristian isn't walking and isn't really using his right arm. I am very concerned about this because the operations were supposed to drain the liquids which in turn would stop the pressure and hopefully help Cristian regain usage of his legs and right arm. We will keep the Faith.

I took Cristian to his chiropractor appointment. Cristian really likes Dr Bob a lot. Doctor Bob feels that within 3 weeks we should start seeing some improvement. Afterwards I took Cristian to his Reiki session. Cristian was so cooperative and at such peace. Afterwards we opened up some of Cristian's new Thomas Trains that Cristian ordered. Cristian then went to Ray's Rosary. Ray is the man that Dylan used to see that has Stigmata. Cristian was such a good boy. The entire Rosary was dedicated to Cristian. Cristian prayed and interacted with everyone. Cristian then spent the night with me and we watched movies and had a blast. I have so much faith that God will heal Cristian.

Jenelle met with Dr.Khakoo about the options and Jenelle chose to go with Etoposide and Depacode. The doctors called me to get my consent and i went along with Jenelle's wishes. I wanted to keep Cristian just on Protocel along with the Chiropractor, Reiki and Ray for one month, without a trial drug. At that point we would have an MRI and see if there was an improvement. Jenelle's reasons for not wanting to go my route is a valid one. Jenelle feels that we dont have to wait. Jenelle has been in contact with the Mother of another patient that was diagnosed with little time to live before he started on Etoposide and Depacode and is now doing well. I consented with Jenelle. We will still have him on Protocel, Chiropractor, Reiki and Ray simontaniously. We want to thank everyone for their support. God is good and we know that God is going to put a hand on Cristian and heal him.

Dr.Khakoo called us and told us that the Panitumumab trial will no longer be open due to a child having a seizure. The other two options Etoposide,Valproic Acid and Derivatives are available. Since Last week I have talked to Jenelle about the possibility of not having Cristian go on these harmful trial drugs for the same reasons that caused that child to have a seizure. I have asked Jenelle to consider it. I strongly feel between the alternative stuff we are doing, we can save our son. I asked for three weeks. There is no rush to put him on Etoposide,Valproic Acid and Derivatives because those trials are open. Jenelle disagrees.

Jenelle took Cristian to Physical Therapy today. Jenelle said Cristian walked two times with the Physical Therapist. Today we were supposed to hear whether or not the Panitumumab trial drug would be open for Cristian but we didnt hear anything.

Today I took Cristian to both his Chiropractor and Reiki appointment . Both went well. Cristian was in good spirits.

Cristian stood with Jenelle this weekend because his sister was going to be with them. Cristian was in good spirits.

Today Cristian went to Dr.Bob, Dr Bob is the Chiropractor that treats Dylan. Cristian took x-rays. Dr Bob showed me how he can release pressure around the stem of Cristian's Brain. Cristian will see Dr Bob every Monday, Wednesday and Friday. Cristian also had Reiki. Afterwords I took Cristian to a Toy Store for being such a good patient. I called Jenelle and I explanied to her that I wanted to keep Cristian on Protocel, Reiki and Dr Bob for 3 weeks without any treatments from Memorial Slone Kettering. The treatments Cristian gets at Memorial Slone Kettering are although are helpful, the down side is the immediate side affects and the long term damage. Jenelle will consider it and we will make the decision on Tuesday. I have Faith that Cristian will get better. Dr Bob said he feels that in three to four weeks we will notice a difference in Cristian's eyes, walking and entire right side! Today was the happiest I felt in weeks. Cristian's spirits are GREAT!!! God Bless everyone for your continued support!

Cristian was in good spirits today. He usually hates taking his Protocel, but today he did. Cristian and I had prayed before we left the house in the afternoon. I am happy to report that his spirits are great. I picked up the latest copy of Cristian's MRI so that the chiropractor can look at it. Friday Cristian will be x-rayed plus treated and hopefully within the next few weeks we will start to see improvements. If by Tuesday Cristian has slight improvement while on Protocel then i am considering not having Cristian take any of the trial drug options and riding Protocel out for another few weeks, then have an MRI and see if there is any improvement.

Cristian stayed with me tonight. We have been giving him Protocel. Protocel is one of the primary things Dylan's father attributes to Dylan's success, along with Reiki, Ray and a good chiropractor. Cristian's spirits were "great". Cristian opened up eight boxes with trains he ordered on E-Bay. I took the night off and we played and watched movies. On Friday Cristian has his first Chiropractor appointment with Dr. Bob, the same chiropractor that Dylan uses. Cristian also has Reiki. I want to thank everyone for your continued support, prayers and visits to Cristian's website..

We met with Dr.Khakoo and she went over the same options as given to Jenelle on Monday by Dr. Dunkle. We decided to hold off on giving Cristian anything until Tuesday October 7th, which is when we find out if Panitumumab will become available, if Panitumumab doesn't become available on Tuesday October 7th we will go with Etoposide or Valproic Acid and Derivatives. Cristian also had physical therapy and was fitted for a brace which we hope will help him to walk. Thank you to those of you that continue to read this daily journal and sign his guest book. “ With faith anything is possible”.

Jenelle took Cristian to see Dr.Dunkle and discuss the options that are available. The options are Etoposide or Valproic Acid and Derivatives. Etoposide is a chemotherapy drug and Valproic Acid and Dervatives is a medicine that is used to prevent or treat seizures. Dr.Dunkle says the Panitumumab might be available in early October. Jenelle and I will discuss our decision with the team at Memorial Sloane Kettering on Tuesday. In the evening I spoke to Joe, which is Dylan's father. I asked Joe advice and he was extremely helpful. The advice Joe gave me was basically the things I have been trying to do with Cristian since he was diagnosed with this disease. Reiki, Ray, a good chiropractor, a moderately strict diet, Protocel and newly Hyperbaric oxygen therapy. I am making the arrangements to just get these things done. Cristian is still the same and I truly believe we can help him get better.

Cristian slept a lot. He has been sleeping more than usual. His friend KC came to visit him. They played with Cristian's Thomas battery operated trains and watched tv. I took Cristian home in the evening. Cristian is still not himself.

Today has been one of the scariest days in my life thus far. I picked up Cristian this afternoon and once he was in the car he told me he had a bad headache and was dizzy. He said he informed Jenelle when he woke up. I asked him if he ate anything and he said no, so I rushed to get him something to eat and when I took him out of the car his head spun around and he looked as though he was passing out. I had Jenelle call Memorial Sloane Kettering and we rushed him there. They took a Cat Scan and it appeared normal. They said perhaps it was because we weaned to a lower dose of steroids too quickly. They released him. Cristian is not the same. His spirits are not the same, he cannot walk. His right side is weak and both his eyes are crossed. This is frustrating for me. Cristian stayed with me so I took the night off and we watched movies, set up the Halloween stuff we purchased and I massaged him. I appreciate everyone's continued support and prayers.

Today Cristian had the MRI. The MRI isn't showing Tumor growth so Dr Dunkle thinks there must be something happening internally. We are going to meet Monday and decide how we will proceed. I wrote the options on yesterdays entry. This has been such a rough week on us. Cristian seems to be the same. Although we have had a rough patch, I am certain that My Son will get better. I believe.

We met with Dr Khakoo today who went over our options, which aren't much. Cristian has been progressively getting worse since his first surgery. I cannot understand this. The doctors said the second surgery was successful and the fluids are draining, so why is Cristian getting progressively worst instead of better. My son cannot walk!!! His speech is getting worst and so are his eyes and the entire right side of his body. A while back I wrote about 2 drugs that I was excited about Panitumumab and Nimotuzumab. Both these drugs are not available right now and we cannot wait. Dr. Dunkle once told me that he would try to get Cristian on one of these 2 drugs even though Cristian wasn't eligable since this wouldn't be Cristian's first trial drug. We will check with Dr. Dunkle on this possibility. In the mean time Dr. Khakoo says we can stick with Avastin and Irotecan which is what he was on before the surgery. Cristian only had small tumor growth while on Avastin and Irotecan. Cristian will have another MRI Friday in order for us to see where we are at with his tumor. Jenelle text me that at 10:30pm that Cristian started to walk on his own. The walking is like it was a few days ago, really bad, but at least he is walking. We have been giving Cristian 2 natural supplements named Trans Factor and Boswelia. Boswelia is a natural steroid and Jenelle wants to give Cristian 6 a day instead of 4 to see if that will help. Some parents give their children 8 a day. This is a natural product and won't hurt Cristian. Cristian's MRI is at 9:30am Friday. Please join us in prayer and that whatever is causing our little boy to have these complications will be found in the MRI. Thank you for you support! Cristian's babysitter is doing a walk for Cristian. Visit the link to find out more information Have a chance walk - Donations

I took Cristian to Ray. Ray prayed for Cristian along with another woman and myself. Ray also gave me oil which mysteriously flows from a painting of Mary and her mother, Saint Anne. Many people credit this oil in healings. Ray also gave me rosaries for Cristian. I felt good when I left. Later in the day Cristian and I had a Reiki session. When Cristian finished he walked a bit on his own but when Cristian realized he was walking on his own he asked me to pick him up. I was so happy. After Reiki, I went to Gamestop and rewarded Cristian with two games for doing well. Please keep praying. I will not stop my quest!!

Cristian had therapy at the hospital today and afterwards Dr Khakoo saw him and called me and expressed her concerns. We will meet Thursday to further discuss the options available for Cristian. I picked up Cristian afterwards and he saw his big brother JC. We ordered trains on e-bay, which is our ritual. I had someone come over and gave Cristian a massage on the massage table which is something Cristian loves. We hooked up his Wii that I got him for his B-day and we played with it and then watched Thomas The Train movies. Cristian's condition is getting worst by the day. I called Ray who is a person that has Stigmata and held sessions with Dylan. According to Dylan's father, Ray is another reason Dylan got better. Ray saw Dylan periodically. Ray and I spoke and Ray will see Cristian Wednesday morning. I also called the Reiki person and scheduled Cristian for Wednesday afternoon. Cristian didn't get to see her Monday. I want to thank everyone who continues to show support. We need it more than ever. Cristian will pull through!!! I believe and I have faith.

I picked up Cristian today to take him to a Reiki appointment. I have been in touch with a Master Reiki woman in Long Island and we decided to start Monday. If anyone knows about Dylan a 6 year old boy with Pontine Glioma just like Cristian. Dylan was diagnosed January 22nd,2004, when he was 18 months old. Dylan was diagnosed with 9 to 15 months to live. Almost 5 years later Dylan is not just alive, but doing well. Reiki was one of the things Dylan's parents attribute to Dylan's success. Any how when I knocked on the door to pick up Cristian and saw my son, who I was with a few days ago, struggling to walk my heart dropped. I went outside to wait for him and I was in shock. My son cannot walk at all unless assisted.Only 1 month ago we were in Puerto Rico and he looked better than he ever did and now one month later two operations and now this. I immediately e-mailed the team at Sloane kettering about my concerns. I didn't hear back from them. I couldn't believe what I had saw. If anyone can help me in my quest to cure Cristian, please do so. We need help Fast!! We cannot give up. We will be Victorious!!

Today Dr.Khakoo Saw Cristian. They did a cat scan. The scan showed that the ventricles are smaller which means the shunt is working. Cristian's eyes and his walking are really bad and the doctors need to figure out why is Cristian getting worst neurologically yet the shunt is working. We are meeting Friday or Monday to discuss the move foward options. Thank you for your continued support and prayers.

Today Cristian had his 6th Birthday party. He was so happy to get the Nintendo Wii that i got him. Cristian's eyes didn't seem to improve nor did his walking. I am worried. I emailed the team at Memorial Sloane Kettering about my concerns. I want to thank everyone for their continued prayers and support.

Today is Cristian's 6th Birthday. The doctors feel he is well enough to be released.

Today Cristian had an MRI in order to further determine why the liquids aren't draining. At this point Cristian's eyes are crossed and can't even keep balanced. The results show that the shunt isn't working. They must operate immediately to relieve the pressure caused by the fluids. They must repair or re-install the shunt. We need everyone's support! Please Pray! He will have the surgery in a few hours! Jenelle and I appreciate everyone's support. Tommorow is Cristian's 6th Birthday.

September 11th,2001 the World Trade Center's Twin Towers were hit by planes in a terrorist act. September 11th 2008 I was hit by something as well, "Bad News". Dr Khakoo informed me that after examing Cristian she said his right side and eyes are getting worst.They did a scan and the fluids are not draining. This isn't good. The scan showed that the port is working so why aren't the fluids draining? Friday September 12th they will do an MRI to see what's going on. Please join me in prayer at 12 noon as Cristian sets his MRI. Jenelle and I have Faith. Our son has been through so much. He is our hero! He is so brave! God please bless our son!

Cherly Fischer responded to my e-mail stating that they will exam Cristian on Thursday 9/11/08 and the move foward game plan was to put Cristian back on the Avastin and Irotecan starting this Thursday 9/11/08.

Cristian spent the night with me on Saturday and Sunday and I am very concerned because the weakness on his right side and also his eyes seem to be getting worst. The surgery was suppose to improve this. Cristian and I prayed together Sunday night. Cristian is truly an amazing little boy.I emailed my concerns to the team at Memorial Sloane Kettering about his eyes and the weakness on his right side and to ask them what is the going foward game plan.

Cristian was released today. He is walking around a bit, but with difficulty. I visited Cristian at home and although he was still unable to get around he was still his bossy self and demanded me to take him home with me. He is much better off with his mommy. Jenelle and I would like to thank everyone for their continued support and prayers.

Cristian had many visitors today. They moved him out of a private room into a room with another patient.Cristian had a few episodes where he had severe pain. The nurses had to keep giving him Morphine. I didn't want him released today.

Jenelle spent most of the day with the baby. After going home at 12 noon to sleep and shower I got to the hospital at 7pm. Just moving Cristian hurts. His grandmother spent the night and said the morphine made Cristian very talkative (LoL). I told Jenelle that i wasn't uncomfortable with Cristian being released Sunday.

I stayed in the hospital overnight. It was so hard for me because you cold hear his pain in his breathing. Many people visited and showed support.

Today Cristian had the surgery. They Implanted the Shunt. When Cristian came out of surgery and was in recovery he was very talkative. Cristian was very drugged up. Cristian complained about pain in his head and stomach which is the two places he was operated on. He also said he was hungry and he was mad at his mommy for not feeding him (LoL). Jenelle couldn't feed him or give him any water past midnight Thursday. Cristian was his normally bossy self. Cristian demanded pancakes! We will monitor him and let everyone know if the procedure was a success. Jenelle and I would like to thank everyone for all their prayers and we believe that with God's help Cristian will be healed.

Today Cristian had his weekly occupational and physical therapy then Jenelle and I met with the Surgeon who would do the procedure on Cristian, Dr.Souweidane. He gave us two options, option A - A shunt would be inserted in Cristian's brain the size of a spaghetti, which will drain the fluids that have built up in his brain and relieve the pressure which are affecting his vision, walking and causing weakness on the right side of his body. Option B - A third Ventriculostomy which will do the same job if not than better than the shunt. This will eliminate the foreign object, (The Shunt) being implanted in Cristian's head, but there is a 15 percent chance that if Cristian will not get the results we want and will have to have surgery again to implant the shunt. Jenelle and I are going with option A - The Shunt. Cristian is having surgery Friday August, 29th. After the surgery Jenelle and I will stay overnight to monitor his recovery. We have full faith that our son will be ok and will beat all the odds this disease offers. We will be inviting you to his College Graduation in 16 or so years.

Today Cristian had an appointment with the Optician. The Optician said his vision was good but his right eye muscle was weak and Cristian cannot move it side to side or up and down due to the pressure the tumor was putting on the nerve that controls Cristian's right eye. After we have the surgery to drain the fluids in Cristians brain the doctor will re-examin Cristian. Please join Jenelle and myself in the prayer for successful surgery.

Today I received a phone call from doctor Gershon he informed me that after taking a closer look at Cristian's MRI, from Thursday August 21st, he noticed fluids building up in the center of his brain. This is a very serious problem. Doctor Gershon wants us to meet with Dr.Souweidane on Thursday to determine when Cristian is to be operated. Cristian will need surgery immediately to insert a shunt in his brain. The shunt will allow the extra fluids being built up in his brain drained into his stomach. The operation can be as soon as Friday. Cristian's right side is still getting weaker and he is still tired which is something, even after the good news on last Thursdays MRI results, I was worried about. This news saddens me because after Thursday's results I thought things were better. Jenelle and I appreciate everyone's continued prayers and support.

Today Cristian had an emergency MRI and the results were *Drum Roll*...NO GROWTH!!!. His tumor is stable and there is a God. Jenelle and I would like to take this opportunity to thank everyone that joined us in prayer while Cristian underwent his MRI. Prayer is strong, but even stronger in numbers.

We noticed Cristian's right side has been weaker, he has also been tired. He has been sleeping alot. Cristian's right eye looks more crossed than ever. Jenelle and I were worried about this, so we set up an appointment for Tuesday August, 19th, upon his doctors examing him they agreed with the symptoms that brought us to make the appointment. They set up an emergency MRI for Thursday August, 21st. Please join us in prayer on Thursday August, 21st from wherever you are.

Cristian went to Puerto Rico for 9 days and had a blast, he put on weight because Jennelle's family spoiled him with the best foods. I took a trip to Puerto Rico, to spend a few days with Cristian and when I got there I noticed he looked great!. Better than ever!.

Today Cristian had his routine bi-weekly treatment of Bevacizumab and Irinotecan. Everything went well. Cristian and Jenelle are going to Puerto Rico this Sunday for 9 days and 9 nights, they are very excited. Cristian is attempting to pack and take his entire Thomas Train Collection. Jenelle and I would like to thank everyone for their guestbook sign ups and all your prayers.

Today was Cristian's MRI and the results came back. The tumor was stable (no growth but there was no decrease), after speaking with doctors we came to a conclusion to leave Cristian on the current treatment, Bevacizumab and Irinotecan. Cristian's next MRI is in 4 to 6 weeks, we will then determine if we should leave Cristian on the current treatment of Bevacizumab and Irinotecan or go on another treatment composed of one of 2 drugs Nimotuzumab or Panitumumab. Jenelle and I would like to thank everyone who has signed Cristian's guestbook as well as everyone for their support and prayers!

Today Cristian had his treatment (Bevacizumab and Irinotecan). Jenelle spoke to Dr.Khakoo and voiced our concerns about Cristian's increased weakness on his right side. Dr.Khahoo has put Cristian back on his steroids (Dexamethasone), plus (Lansoprazole) which is to coat his stomach. Cristian will take 1 milligram during the day and 1 milligram at night. Cristian's next MRI will probably be the most important one. If his Tumor grows or stay stable without decreasing, then we have a lot of important decisions to make. If the tumor decreases in size then we will stay on his current treatment (Bevacizumab and Irinotecan). If the tumor grows then we will attempt to start one of two new drugs (Nimotuzumab or Panitumumab) which more info on these 2 drugs can be found on the Wednesday June 18th, 2008 entry. If the tumor stays stable we have to decide whether to keep him on Bevacizumab and Irinotecan or switch to Nimotuzumab or Panitumumab. Jenelle and I want to thank everyone for their guestbook sign ups and all your prayers. Without your support we would be fighting Alone!

Today Jenelle and I met with Dr.Dunkel of Memorial Sloan Kettering. After speaking we all agreed that we should keep Cristian on his current regiment of Bevacizumab and Irinotecan. Although his last MRI on Wednesday, June 11th 2008 showed an approximate 5 percent increase in size we are going to keep Cristian on his current regiment for 4 more weeks and then depending on the results of the MRI at that point we will determine whether to continue on his current regiment or not. If we don't get good results then we will try one of 2 new trial drugs which has been tested with success in Cuba and Germany, Nimotuzumab or Panitumumab. Mab, means antibody medicine. Cristian would take one of the two drugs (Nimotuzumab or Panitumumab) weekly. Cristian is currently not eligible for both these drugs because they are for patients who are on their first alternative trial after standard radiation and or chemotherapy. Cristian is on his second trial. Dr.Dunkel thinks within 4 weeks the red tape with Cristian not being eligible will not be an issue.

Today Cristian had another MRI. It was the second MRI since he began the new treatment on Thursday 2/28/08, consisting of the Combination of Bevacizumab and Irinotecan. When Cristian had his first MRI on 4/14/08 while on this combination of Bevacizumab and Irinotecan, there was a decrease in the tumor's size by almost 15 percent. We were so happy. But on Wednesday June 11th 2008 his second MRI while on the Combination of Bevacizumab and Irinotecan the results were a slight increase in the size of the Tumor, 1/2 centimeter in Diameter or .5 millimeter. This was so upsetting and discouraging. Dr. Gershon of Memorial Sloan Kettering met with the team and they agreed they must change Cristian's regiment immediately. This was so upsetting to us because we had incredible results on the first MRI 4/14/08 while on Bevacizumab and Irinotecan. Our dear friend Ralph Mercado Sr's Tumor had disappeared while on the same regiment of Bevacizumab and Irinotecan.

 

Dr. Gershon wants to meet with us on Wednesday 6/18 and discuss the possibility of 2 trial drugs that Memorial Sloan Kettering is currently offering, Premetrexed or Panatuzmab. We will not stop fighting because our son is Alive and Strong with a will to live. He is his normal "Bossy Self"!!! We appreciated all the guest book entries and all the prayers. We welcome them all with open arms!!!

Cristian seems to have no desire to eat. It is a struggle to get him to eat. In my opinion, his right side is also getting worse in my opinion. Besides that Cristian is living a normal life. Cristian isn't going to school because of his inability to go consistently but he reads and writes and is very smart. Cristian is enjoying his spring. He has went to see Lion King on Broadway, Diego at Radio City, Sesame Street at Madison Square Garden and has made several trips to the Bronx Zoo and several dozen trips to Toys R' Us and FAO Schwartz, which are his 2 favorite places. Cristian also has been enjoying driving his Jeep around. It is a battery operated Jeep. Cristian also has been expanding his incredible Thomas the Train collection by buying rare trains on e-bay.

This week Jenelle's friend Maryanne set up a healing mass for Cristian. It was incredible, the Pastor seemed to be able to look at people and tell them what was wrong with them and then through the power of God and Faith Heal them. Incredible. He prayed over Cristian and said Cristian will be healed. Jenelle and I believe!!

Cristian enjoys his physical therapy. He calls it exercise.

Cristian is not eating at all. If he eats two meals a day it is a lot. It is a struggle to get him to eat right. We tried a Gluton Free diet and he wouldn't eat anything and now a sugar free diet and the same. Currently we are allowing him to eat almost anything just to get him to eat. Cristian keeps saying that he doesn't want to look fat, like he did when he was on steroids. Cristian has developed a complex about looking swollen and or fat, the way he did during the early stage of his illness during which he took high dosages of steroids.

Cristian has been taken off Steriods. This decision came from the team at Memorial Sloan Kettering. We didn't think the steroids were effective anymore anyway.

Even though we know Cristian got great results on this first MRI on 4/14/08, while on the new treatment, we are concerned with Cristian's weakness on his right side. Usually the weakness is a direct result of Tumor Growth. After meeting with the doctors and expressing our concerns they said his weakness on his right side is due to the extensive nerve damage and they recommend starting Cristian on physical therapy.

Cristian Had his first MRI since being on the new treatment (The combination of Bevacizumab and Irinotecan). We were very pleased with the results. Cristian's Tumor decreased in size approximately 15 percent! This was the best news we have received during this ordeal. We want to thank GOD first and foremost and also all the people who's prayers made this all possible and last but not least the entire team at Memorial Sloan Kettering Dr. Khakoo, Dr Gilheeney, Cheryl Fischer, Dr. Gershon and all of Cristian's nurses, especially Danielle. Today's news has made us so happy.

Our dear friend Ralph Mercado Sr. Had fellow Christian Ismael Miranda (also the salsa signer from Fania Records) visit him at home. Ismael Miranda along with a fellow Pastor prayed for Ralph Sr. after the prayer was over he declared Ralph Sr. healed. Ralph had an MRI a few days later and Ralph's tumor was gone. Praise the Lord!!! Ralph Mercado Jr. called Ismael Miranda who was in Boston at the time and asked him to come back to N.Y.C. to Pray for Cristian. Ismael Miranda had worked with me in the past while performing at a few Fania All Star Concerts I did in conjunction with Ralph Mercado Sr. In NY as well as P.R. Ismael Miranda drove to NY and prayed, along with Nicky Cruz and a fellow Pastor, They declared Cristian healed!!! Jenelle and I Believe!!!

 

Update 10/30/2007

 

Today was Cristian's MRI, and it read that his tumor has not grown and is currently stable. We believe that the new treatment is helping. Like I mentioned before this treatment is not a cure. My hope is that this medicine will help Cristian until we do find a cure.

 

I was so moved by all of the emails, and messages in our guest book this week. When I read them I'm so inspired to keep fighting, they give us strength and hope. It makes me feel that we are not fighting this alone, we have an army of angels behind us. Many are from people I've never even meet and it just goes to show there is beauty and compassion still left in the world.

From the bottom of my heart and on behalf of our family, THANK YOU...THANK YOU...THANK YOU!!!
You're prayers and well wishes are working!
God Bless!

Jenelle & John

 

OCT. 26TH,2007

 

First and foremost I would like to thank you for taking the time to stop by our page. This is my first time writing a journal entry. It has been 9 months since our son was diagnosed. When I sit here and try and remember all the details from January 2007 when our lives would be forever changed till now I must admit it's a bit of a blur. I wish i would have started a journal back then, but mentally I wasn't prepared. It was so much to take in, I really have to thank God for giving us all the strength and support of amazing family & friends for bringing us this far. I will gather all my information so that I can write a more accurate summary of the past nine months. If you look at the "Treatment Plan" section of our website you can see a brief summary of what meds and treatments Cristian has received thus far.

 

What we are doing now:

On Aug. 2nd, 2007 Cristian received an MRI which showed that his tumor was beginning to grow again. Because he had already finished his maximum amount of radiation in the previous months, it wasn't an option to do it again. Honestly we had little options left. After speaking with Dr. Stephen Gilheeney one his doctor's from the Neuro-oncology team at Memorial Sloan Kettering. He suggested phase 2 of a clinical trial he was participating in. This clinical trial consists of administering once weekly, intravenous Temisirolimus. The doctor explained that this is a drug that has been previously used in adults with tumors and has shown signs of stabilizing tumors and in some cases shrinking them. This clinical trial is the the first time they have tried using this drug with children. With clinical trials come side affects, some small, some big. Thank God till this date Cristian has tolerated the medicine extremely well with no side effects at all. His last MRI in Sept. 25th,2007 after about approx. a month and a half on being on Temisirolimus, showed that his tumor was stable and had not grown. Because it was too soon to tell we are not sure if it was due to the new meds or not. Cristian has another MRI scheduled for Oct. 30th, 2007. We are praying that his tumor is still stable, and I ask that you please keep him in your prayers. This drug is not a cure, it's hopefully something that can give us more time until we do find a cure.

Thank you and God Bless,

Jenelle & John

 

P.S.

Since this site is new we don't have all of our info up just yet, if you are parent and have questions that we weren't able to answer please feel free to email us at gungie@victory2multimedia.com or jenelleasencio@yahoo.com

i will be glad to help in anyway I can.