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

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.