Day 3 of radiation complete and still going strong!
Christian's PPB Cancer Journey
Christian's journey to beating Pleuropulmonary Blastoma (PPB) cancer!
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Day two radiation done three more to go. We are meeting with the oncologist from our other hospital on Monday to see if there is any clinical trials that could benefit him. If not his oncologist has a new chemo treatment plan he will start after radiation therapy done. Have to love the insurance company’s, they already denied one chemo medication. Something needs to seriously be done about the health insurance company’s.
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Day 1 of proton radiation done. He did great it took about one hour.
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Thank you too father Omachi for blessing our son today. While we were waiting at the church the proton center called he starts radiation therapy tomorrow. His new chemo medicine is in the works. We have an appointment with a pediatric oncologist at our city hospital to talk about if there any research medicine that are available that might help him. We also seen his pulmonary doctor today and he has everything in motion incase he gets any of the side effects from radiation like coughing or fluid in his lung.
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Wednesday we spoke with his surgeon. surgery is not completely off the table but it’s just too risky. With only having one lung if they start taking pieces out not only are there serious risks but he would possibly require oxygen which they then ask what his quality of life would be. Everyone is in agreement that surgery is not the route to go at this time. Today we met with his oncologist and the plan going forward for now is to stop the medication hes on right before radiation because it could not be working since the tumor grew quite a bit. After radiation is done, he will start a new chemo regimet. It will be one pill taken twice a day by mouth and one chemo med hung on an IV pump. We are still waiting for them to schedule an MRI on his leg. Depending on how that looks, they may do radiation on that area and treat it with therapy. We are also waiting to see the oncologist from the other hospital because there might be more testing they can do with bloodwork and they may have a different treatment that might be promising. His oncologist is on the registry for PPB cancer. Once any cancer comes back it becomes harder to get ride of it. His oncologist doesn’t know what to do to cure it at this point. We just keep praying that he will be cured this time. I pray to god we are right. Scared is an understatement. Something has to work. https://gofund.me/e957be7d https://christianscancerjourney.com
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Today we went to the proton center they made the impression of his body and did a MRI under anesthesia. The plan is to start proton radiating in two weeks unless they can get him in sooner. It will be five days this time instead of 20 because its a smaller area. Side effects can happen four to six weeks after the side effects are coughing and fluid but we are hoping that will not happen. They don’t know yet but he may have to stop taking the chemo medication for the five days of radiation.
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Yesterday he had his MRI of chest under anesthesia. He was not feeling good in the morning he ended up getting sick a couple times. We spoke with the radiation oncologist yesterday we go Monday to the proton center to make an impression and will start proton radiation on the tumor in the left lung. One plus it will only be five days this time not 20 days. Down side it will take three to four weeks to start. We spoke with his oncologist today he wants to schedule an MRIof his leg. He has a spot on his right leg they were not concerned with on past image untill now the pet scan Tuesday showed it lit up and grew. He thinks it could be cancer. There are some treatments that may be possible but our oncology team can’t get to the medicine so we are meeting with the oncologist at our hospital we do surgery and scans at see if they can come up with any other ideas for treatment. They are going to do more testing on the tumor they last took out. He is getting side effects from the chemo medicine. Its affecting his nail beds, his appetite is way down and he starting to lose his eyebrows and hair
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So not so great news today. Christian had pet scan and ct scan today and tomorrow he has an MRI scheduled. Today’s scan showed the tumor grew since his last scan. Six weeks ago it was 1.5cm and today 2.5 cm. We are speaking with radiation doctor tomorrow about possibly starting radiation if we go with proton radiation therapy. he won’t be able to get on the schedule for a few weeks but they have another type of radiation that is an option. His oncologist should be calling before the weekend and we meet with the surgeon next week. Please continue the prayers. Chris found some more testing we are going to talk to the oncology team about doing.
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The results from the fusion test came back and everything was negative, so they did not find any gene fusions to target. As of right now there is no more testing that we know of that can be done. All we have now is hope and faith that the chemotherapy is working. His appetite is still down it’s messing with his belly. His hair is starting to thin but he doesn’t mind he likes being bold like his daddy he says. His strength is unreal. We made a set-up at home to take pictures for his Make-A-Wish yard sign. They sent him a beautiful card and a special Make-A-Wish squishmellow. We took a picture of him and rubble with it and are going to make a heart puzzle for them. It’s amazing what they do for kids, making their wishes come true.
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The results from the fusion test came back and everything was negative, so they did not find any gene fusions to target. As of right now there is no more testing that we know of that can be done. All we have now is hope and faith that the chemotherapy is working. His appetite is still down it’s messing with his belly. His hair is starting to thin but he doesn’t mind he likes being bold like his daddy he says. His strength is unreal. We made a set-up at home to take pictures for his Make-A-Wish yard sign. They sent him a beautiful card and a special Make-A-Wish Squishmellow. It’s amazing what they do for kids, making their wishes come true.
Christian's PPB Cancer Journey 