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 responded to her. I know this made Cristian very very happy. Jenelle and I met with Dr.Khakoo and the game plan is to give Cristian his Chemotherapy while Cristian is on the breathing tube and hopefully the Chemotherapy can attack the tumor. The doctors are saying that maybe the same way the tumor has attacked his eyes, his speech, his right arm and his ability to walk, this might be happening with his ability to breathe. Silvia called Ray the stigmata 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.