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Jacinto Falcon III Story  

When I was pregnant with my son the doctors told me around like 16 weeks they had seen something on his brain. They told me it looked like a little pin hole of extra water. So, they had a test done on me to see if he had down syndrome. This test was done at the new outpatient building in Amsterdam NY. I waited patiently for the answers to come back. I was so nervous and did not know what to expect. The only thing I wanted was a healthy baby boy. This would be my first boy. So, a couple days went by and I got a phone call from my doctor Charland in Amsterdam NY that the results came back and it was negative. They also told me what I was having and I still remember that day. They told me to start painting everything blue because it was a boy. I was so happy to hear I finally got a baby boy. I have 2 girls and wanted a boy. So, after all that worrying everything went okay. Everything was going okay. It came to 40 weeks and they asked me to do you want to be induced because you are inducible and I was like yes let’s do it. I was happy I was finally going to meet my baby boy. So, the day came it was Friday morning on October 7^th, 2016. I had to arrive at 6 am to start all of this. When I got there, I got in a gown and they hooked me up to the machine. Around 8 am dr. Charlands partner came in and was like are you ready for today hopefully we get a baby today. I was like yes let’s get this started. So, he then checked me and I was already 5 cm that day anyways so he popped my water and see how that went for a little while. After he popped my water he said that he sounded happy. A few hours went by and still nothing I didn’t feel anything at all. They kept saying well maybe we should give her this medicine that will get things going. The doctor said no let’s just wait a little while. So then probably around 11:30 I started feeling contractions and they were not that bad but they were bad enough. So, I called the nurse in around 12:30 and said okay I think I need the epidural. She said she would call them to see if they could come up. It was not until about 1:30 they came up and gave me the epidural, but the epidural did not work by the time they were done giving it to me around 1:45 I turned 10 cm and it was ready to push. The doctor had just left a few minutes before thinking I wasn’t going to go soon, but gosh after that epidural it kicked everything in. He ran across the street. I was upset and kept telling them I must push. They kept telling me hold it in the doctor is coming. Mind you his father left to run out for a few because we didn’t think I would go in anytime soon. The doctor was back and he said okay cherish now it’s time to push. I was freaking out and crying because the pain was so bad at this point and his father wasn’t there. We had called him and told him to get here its time. He was stuck in traffic at the time. So, I pushed and pushed the doctor had to tell me to slow down because I would bruise his face. I just wanted him out of me. I did slow down and right when his head was out there was a complication. His arm got stuck on my pelvis bone and he had a broken clavicle. His dad just got there in time. He was there for the last push. He came out weighing 9lbs 4 oz. He was so beautiful. We stayed in the hospital for a few days. He did have to have his arm pined up to help it heal. He also had 2 test done for jaundice because he was a big baby and his eyes were yellow. They both came back low which is good. We went home and he was healthy, eating normal, happy all the time, didn’t really cry. Then one day suddenly, he started vomiting and his eyes were down shadowing to the point I was scared I started crying. I had gotten on the phone and called his doctor right away they told me to rush him to Albany Medical Center which I did. We got to Albany Med. They ran a whole bunch of test on him to see what was going on. This day was December 7th, 2016 when I heard bad news. I was told my son had a brain tumor and his ventricles are big and its starting to make his head big and give him a headache that is why he is not keeping down food and vomiting. That was the day our whole life had changed. He was hospitalized as an inpatient that day. They came to me at about 9pm at night and told me he had to go into surgery to have an evd placed so his ventricles will drain like they drain in all of us. At about 11pm the surgeon come out and told me everything went great he would be sent up to picu. So, I was heading up there at 11:30pm to see him I was all upset and did not know what was going to happen at all. I called his dad on the phone to let him know what was going on because he had to go back home to our other 2 children. After I got off the phone his grandma (his father’s mom) showed up and stayed with me. We had to wait till midnight to go into the room to see him. Once we got in there we seen he had an external evd coming out of his head draining all that fluid in there. Me and his grandma stayed up all night we couldn’t sleep after all that. The next day they were doing rounds and they had told me what was going to happen. We were asking the nurses a whole bunch of questions like if he would make it, how big is the tumor, how did he gets it. They told us to write everything down and then ask the doctors when they came in. Mind you he had some good nurses. They had showed us the mri and his tumor was 6cm mind you he was only 2 months old when he was diagnosed so that was important. A couple of days went by and they told me it was time to go down to have a biopsy to see if this tumor was cancerous or not. We went down at about 6am and dr. adamo told me all the risks to this and I signed the papers. He was in there until about 1:00pm and then an oncology doctor dr. Weintraub had come in and told me I am sorry to tell you your son has cancer. All I did was break down. I did not understand at all what was going on. How did he get cancer neither one of my other kids have cancer why him? I kept thinking to myself my baby boy is not going to make it. Why him he does not deserve this at all. So, then I finally spoke so what is going to happen. She came out and said I don’t know but we will do everything we can to help him. A couple more days went by and the results for the biopsy came back and I was told he has atypical Tetartoid/Rhabdoid Tumor. Which is a fast-growing tumor and there is not any cures for it just trials. I cried again and I said okay what is the plan. She told me we could do chemotherapy and try and fight this or we could do nothing it is up to you. I said I want to do chemotherapy. She said okay but I need to let you know this fight is going to be a hard fight we must give this tumor everything we have. I said I don’t care let’s do it. So, on December 17^th, 2016 he was sent down to have the shunt placed internally and have a brovaic line put in so he could receive chemotherapy. We did spend Christmas with him in the hospital they had put us up in a hotel right across the street from him. Around December 20^th it was time for him to start his first cycle of chemotherapy. I was so nervous. They sent him over to general pediatric where he began. He went through the first cycle like nothing ever happened. He was happy at times but miserable at others. He got a bad diaper rash from it and had mouth sores as well. In January, they thought it was time to place a g-tube in so he could feed better. So, 28 days later it was the end of the first cycle. In the middle of January, he had started his second cycle. They had to delay it a little because he had developed 2 viruses. The second cycle went as good as the first one but better. Around February 9^th we were then transported to Montefiore children’s hospital in the Bronx for an initial visit because that is where he was going to go to have his stem cell transplants. He needed 3 of them that would take 3 months. We were there for about a week and then sent to Delaware where he had the stem cell harvest. Which he did amazing on. We were there for four days and sent back to Albany Med. When we got back to Albany med. They had told us that his shunt needed to be revised it was not working properly. So, they sent him down to have it revised. He was then sent up to picu. Dr. Adamo came in and told us that his tumor had shrank down to nothing which was a good thing. I was so happy to hear that. That night I had went home to see my other 2 kids and I was told he had a seizure in the night which they had everything under control. I was scared because he never had a seizure before. The following day I got a phone call saying how would you like it if Jacinto came home with you guys for the weakened. I was like yes I am ready his sisters miss him so much we need this. I then went up to Albany Med. To be taught everything. It came to the time where I got to sign discharge papers. We got in the car and was headed home. We had a good 3 days’ home. He was so happy and loved seeing his sisters. That Monday I had to bring him in to embolize the tumor. When he got in there he was in there for about 2 hours before they came out to me and said We did not even embolize it the tumor was dead and all the vessels around the tumor were smaller. I was happy to hear that I told the whole family what had happen. He was then sent back up to picu to keep an eye on him with the line in. I was told again he had another seizure. The following day he was sent down to have the tumor toking out. We were told it would be a 4-hour procedure form 11 am. It got to 6pm where we were told that it would be a couple more hours but everything is going good. So, at about 10pm dr. Adamo had walked out and said we got the whole tumor you guy can go up in an hour to see him. We both were happy to hear that we thanked him. We then went up to see him and he was still sleeping and cranky from the anesthesia. His left side of his head was bandaged up. They told us the following day they don’t think his shunt is working so they placed an evd to let it drain. They took him down for an mri where it showed his ventricles were big. They then took him down for another shunt revision and fixed it. After he was sent back up to picu we were told that he was partially blind as well. Well they said quarterly blind. Which at first I believed it but now I do not he looks directly at me and smiles. 2 weeks after all this he was then transferred back down to Montefiore to have his stem cell transplants. We were there for about a week and we were told he had to be sent back to Albany because there was something in his brain. They told me it was his cyst that he has had from day one it was growing. When we got back up here they told us it was a tumor that had grew. That they were not concerned about the cyst at all. A couple days went by and they told us the plan was to do more surgery and that he could go home till he had surgery. So that Thursday April 27^th, 2017 he got to come home. He was so happy to be home. He was talking and moving around and laughing again. We did have some bumps in the road. He had developed a cold but other than that he was fine. On May 2^nd, we had to bring him back in so he could get the tumor embolized but this time they didn’t feel it was safe to do it they had to take the tumor out immediately. So, he was supposed to have surgery on Wednesday May 3^rd but they had cancelled it because a nurse did not follow directions and gave him a shot for his blood clot he has in his head. So, he went down for surgery on Thursday May 4^th at 11 am they had pulled me in the pre-op room and told me he had to have 2 surgeries because he had pulled his broviac line off and broke it. So, when one doctor was in the or room doing that his doctor dr. adamo came out to us and pulled us a side and told us that the tumor he had to get was deep in his brain and it was in the center of his brain this time and he would be starting his surgery at 12 after his line was placed. So, we waited and waited and waited in the waiting area till 9pm when dr. Adamo came out and told us he got the whole tumor out he was pretty sure about. This time we went up to see him and he was once again in picu but he was swollen and his whole head was bandage and he was on a breathing tube helping him breath because he was head down for 10 hours. He had a line in his leg helping them know what his pulse was. He was sedated and his arms were restraint. The following day he was sent down for an mri to see what happened if they really got all the tumor out. I had called them the following day to see how he was and to check the mri they told me the mri was not back check back tomorrow and he was doing good they pulled his breathing tube out and he was doing fine. The next day I called again to check on him and his mri and I was told he is fine he is tolerating feeds again. He is happy and moving around. They put the resident on the phone and they told me that the mri read that they got 80 percent of the tumor out and that there were spreading nodular but she didn’t know what that meant. So, the next day we were heading in to find out what was going on, but as soon as we started getting in the car we got a call that dr. Weintraub wanted to talk to us when could we be there we told her we are on our way. Around 5pm on May 8^th, 2017 we entered his room to find a happy baby whole was smiling at mommy and playing with her. Then dr. Weintraub came in and asked us what we knew and we told her. She then said well here the thing he still has some tumor left in from surgery but there is more growing where we just took it out. She said his chances of surviving were low when the tumor came back but sense the tumor came back again it is really low. She looked at us and said we have 2 options one is we try chemo again which I am all for it the second is we do nothing which is fine. I mean you have fought for so long he is fighting. I then started crying and I was like yep this is it im going to lose my baby boy and I asked well can we do chemo he then looked at me and smiled so I knew right there he was not ready to give up yet and neither am I am looking for another place that can help him and try to get rid of this. He deserves it. I told everyone I don’t care what any doctor says about this tumor I don’t care how aggressive this tumor is I will be 100 percent more aggressive then that tumor will be. He asked me not to give up on him by smiling at me when I mentioned chemo. So that right there was a sign to keep fighting if he is ready I am too. That is a little bit about what he has gone through so far. And I am hoping and praying he makes it so much farther and cancer free. We are asking the public to pleas ehelp us raise money for him by buying a shirt in honor and support of him. All money raised will go on him 100 percent anything he needs and traveling expenes to get him back and fourth to his appointments.