Christian's PPB Cancer Journey

We want to say thank you to everyone who came and sent flowers, love and supporting messages for Christian’s funeral. We are sorry we have not responded till now. We did not want to be rude or seem like we are ignoring anyone. This has been the hardest thing we have ever had to go through. We just have not wanted to talk. Every day is a nightmare for us. They say it gets better with time, but that’s not true, it gets worse every day. The saying god only gives you what he knows you can handle is so not true. I don’t want to live this life without him. We are completely heart broken. Life is not fair; he barely got the chance to live. I truly believe he would have changed the world. He touched everyone’s life he entered. I don’t believe in faith anymore, but I must try and believe when we go, there is another place and we will be with him again. It’s very hard to hold on to that. We want nothing to do with the holidays. He loved Halloween because he got to dress up and he loved Christmas. Any holiday, vacation or any day we went and did something fun we would ask what was your favorite part he would say spending time with my family. He was so smart, strong, funny and full of hope and energy. We would tell him all the time he is our real-life superhero. He was also my cuddle bug, my sunshine, and my favorite person in the world. There will never be anyone like him again on this earth. His personality was one of a kind. He would say never back down never what? And we say give up. People have said he was lucky to have us as parents; no, we were lucky to have him as our son. We were blessed with him. All his surgeries, CT scans, full body bone scans, MRI’s, I would carry him into the room before he would get put to sleep. From the very beginning he was so strong and as he got older, he would just roll his eyes like ok let’s just get it done. He was ok if I, his mommy was holding him. Until about this year he wouldn’t sleep in the bed at the hospital he would sleep on my lap in the recliner. I can go on and on about how great of a person he was and how hard the fight was. No one really understands childhood cancer until you live it. Theres so much more than scans, chemo meds that make you sick and have terrible side effects, or radiation. Theres the middle of night runs to the emergency room anytime he got a fever. Its spending most of your life at the doctor’s office or hospital. It’s the constant fear that the cancer will return. The being poked all the time to have your chemo port accessed to receive meds or taking blood samples. Having to go home with your port accessed and not being able to live a normal life and play like a kid should be able to run around and play. It goes deeper. We want to keep his life story going when and as we can. We are going to post pictures and go more in depth into his story. He wanted us to get his story out there and that is what we are going to do. We are happy we had a great team of doctors and surgeons on his side. He was having a hard time swallowing the chemo pill, and it was time for him to have a CT done, so we figured since he needed an NG tube why not do it while he was asleep for the CT. We went down after the Ct scan to see if he could do physical therapy sooner that day and I got the call to come back upstairs to the doctor’s floor. They told us that on the x ray it showed he had pneumothorax and needed to have a chest tube placed to remove the pocket of air around his lung. In less than an hour, they had their team together and he was in the procedure room. That was his 6th chest tube. With getting the chest tube, they gave him a nerve block to help with the pain, but that meant he had to have a urine catheter. The urine catheter was starting to bother him so he asked if they could take it out and he would try and go pee on his own with it. After some time of not being able to go, they ended up having to put a urine catheter back in. After about a week he got discharged. About seven days later he ended up having pneumonia and was needing oxygen. They put him on strong antibiotics, and he started to get better. While in the hospital with the pneumonia he got up the courage and was able to do his first CT scan awake and we were so proud of him it was like he went to college. Then it just started going downhill. His leg was bothering him from all the setbacks and being able to go to PT. He was in a lot of pain from the rod and screws. While in the hospital with pneumonia they also saw fluid around his heart. They had removed the bag around his heart when they took the lung out. He started a new chemo medication and was going for weekly CT scans of his chest and ultrasound of his heart to help monitor the pneumonia and fluid around his heart. He was taking like seven different medications between antibiotics, pain meds, steroids, and chemo’s. His lower back started to hurt, and everyone thought it was from coughing so much but really, it was the tumor growing. He would spit up phlegm from the pneumonia and then he wasn’t able to eat. After a few days of not being able to eat they wanted to do another CT scan and that’s when we found out the tumor grew and was pushing on his esophagus. We met with his surgeon, and he pretty much told us there was nothing that he could do and that we needed to start planning end of life care. We started crying and Christian just looked at us and said come on, let’s go, we got this. He really believed he was going to be ok and beat this evil cancer. Friday, he wanted to go to round one and the candy store before we went to the hospital the next day for nutrition through his chemo port. The doctor said take him out and do something fun before coming to the hospital. He got the first night of nutrition. The next night he was needing more oxygen and then he woke up said he wasn’t feeling good then he was out of it. We told our daughter go get the nurse. That’s when he stopped breathing the doctors came in nurses from ICU I was screaming save my baby please save my baby. They were able to get the tube down and breathe for him. The doctor was trying to get us to let go. Giving up was never an option. When they had everything settled, he was on the ventilator that was breathing for him. I got into the bed next to him I got to hold him. All his doctors came to see him they all cared for him very much we believe. Dad and me didn’t shower or eat we left his side just to go to the bathroom right across the hall from his ICU room. His sister was with him and grandmother. The one morning they did rounds and said they were thinking about placing a feeding tube and we thought things sounded good, then ten minutes later they came in said he probably not going to make it through the night the co2 build up in his body was poisoning him they couldn’t stop it. They made things with his fingerprints and feet. I asked them to help me record his heart beat I needed to be able to hear his heartbeat. That night the monitors started to go off we knew from the numbers the doctor came in said we are turning the monitors off in the room and that they can see it outside. We just kept talking to him telling him how much we love him how strong he is we promised him we would do what we could to find a cure in his honor, so no other kids must go through this. I laid in bed and held him dad held his hand. We don’t know if he was able to hear us and He wasn’t able to talk to us, to tell us how he was feeling or what he was thinking. I was counting his heart beats as it slowed down then his lung started to compress and his heart stopped. I laid on him holding him. His body got so cold and stiff his oncologist came to the hospital shortly after he had passed which meant a lot to us. We played his favorite YouTube channel and had AGT on the tv. Tuesday would be taco Tuesday and Americas Got Talent, his favorite show. The nurse came in and said that they had to give him a bath because his body was starting to turn purple and that we should go soon so they could get him down to the morgue. They allowed us to help them give him his last bath. It was so hard to leave the hospital without him. A few minutes after he passed, they came in and took out all the iv’s and breathing tube so we could hold him tighter. No family no child should have to go through this. We promised him as his parents we were going to find a cure that is why we are doing this fundraiser for the research team in Texas. We believe they will find a cure. We also need help getting the word out about childhood cancer and our fundraiser. We plan on keeping his story alive by going back and telling his story outside the world of cancer and sharing pictures of him doing all the fun stuff he enjoyed so everyone can understand better how great he was as a child. We also plan on staying in close touch with the registry and staying on top of the new treatments options and will post updates as we have them.