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.