Christian's PPB Cancer Journey

Christian's journey to beating Pleuropulmonary Blastoma (PPB) cancer!

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  • Pleuropulmonary Blastoma (PPB) Update 9/2/2026

    It’s with a heavy heart that we must say that Christian lost his battle with cancer last night. Beginning the week prior, Christian began having a had time swallowing food and then liquids. We tried to get an appointment with his pulmonary team and ended up going to the city on Thursday for a CT scan which showed that the tumors in his left chest have grown to the point that they had began pushing on heart and esophagus. Our surgeon informed us that there wasn’t anything left to do but try and keep him comfortable because the chemo wasn’t working and surgery wasn’t an option. He lost a lot of weight during the week so they told us we could get admitted to the hospital and he could receive TPN through his chemo port to help him get nutrition. Christian asked if we could go and do some fun stuff on Friday before we went to the hospital so on Friday we went to a candy store so he could pick out his favorite candies for when he got better and could eat again and went to the arcade to play his favorite games. Saturday we went in through the emergency room in Westchester so he could begin his TPN. He was having a lot of pain for the last few days which he was getting morphane to help control but it would just knock him out. Sunday afternoon he woke up saying he didn’t feel good. Shortly after 8pm he coded and stopped breathing. The team rushed in and ended up having to incubate him and put him on a ventilator and he was transferred to the ICU and placed under sedation. We found out in the ICU that because so much of his lung was being crushed by the tumor that his lungs went able to properly remove the Co2 from them. The ventilator help flush his lungs for a while but by Tuesday morning it wasn’t enough anymore and his Co2 numbers began to climb again. The doctors came in again and had the talk that no parents ever want to have and they basically told us that his Co2 number were going to continue to climb and make his blood too acidic which would slowly eventually stop his heart. We had all been praying for miracle for him but our prayers were never answered and he passed away at 9:20pm. Me, my wife, his sister, and his grandmother all stayed by his side the entire time holding his hands and showering him with kisses, talking about all the amazing fun stuff we have done and all the fun stuff we were going to do together once he got all better and telling him how proud we were of him and how brave and strong he was.

  • Pleuropulmonary Blastoma (PPB) Update 8/27/2026

    The mucus has gotten worse and he’s not able to eat and can barely keeping down fluids. We went for a CT scan today and he did amazing. We found out that the tumors on the bottom grew since the last scan there are more spots and the spot on the top of his lung. The tumors are pushing on his esophagus and heart that is why he can’t eat. They can do something called TPN to give him nutrition through his chemo port. Its the news that makes you sick to your stomach. We are not giving up. Theres one other chemo option that we could try but he will need to be able to swallow it which he cant do right now. He needs a miracle.

  • Pleuropulmonary Blastoma (PPB) Update 8/16/2026

    It has been a while since we did an update. He has two CT scans the last one showed the spots on the bottom of his lung has gotten bigger. There is still a spot on the top of his lung and some other new spots. He goes for a EKG every other week plus chest ultrasounds. We see his pulmonologist every two weeks now, it was every week. He has physical therapy three times a week in Manhattan. His knee is still the size of a baseball. The shape of it changes the screws stick out more it is possible the bone is growing over the screws or the tumor can still be active Couple weeks ago the president passed us on the FDR drive he was heading into the city. His leg has been hurting him everyday sometimes all day. He is on about six different medication that includes his chemo pill. They wrote a script for THC for appetite and CBD for inflammation and pain. We met with a pain specialist he suggested a lot of his pain could be from the swelling pushing on nerves. He started him on a nerve medication.

    The pharmacist at the weed store said Chris and me should try the gummies so we know how he feels. and it could help us with sleep. We said no we haven’t even had a drink in years we are to afraid he could spike a fever at anytime and we would have to drive to the hospital its not worth the risk. The pulmonologist wrote a script for a multi function ventilator for at home. He has had a lot of mucus when he eats. He wasn’t feeling good had a headache we checked his oxygen and it was low so we had to put him on a small amount of air. We are scared to death but we are still trying to keep faith.

  • Pleuropulmonary Blastoma (PPB) Update 7/10/2026

    We were home for a couple days and we had to put him back on oxygen he started to de-stat.

    Monday he went for a chest CT and did it awake we were so happy and proud of him again. The doctor started talking about possibly going in and draining the fluid. His pulmonologist put him back on a steroid and within a short period of time he didn’t need the oxygen. The pulmonologist also decided to continue the IV antibiotic at home for an additional week. Thursday we went to the oncologist office for labs and so they could re-access his chemo port. They have to change it out every week. This past Tuesday we had another appointment with the pulmonologist. He said that his lungs are sounding better and that the last CT scan looks better. Wednesday we went to the hospital for an ultrasound of his chest to measure the amount fluid remaining in his lung.

    They want us to repeat this ultrasound again in two weeks. Today we went to the oncologist office so they could do labs again and remove his port access for the first time in like 8 weeks. We spoke to the oncologist about new treatment options since the he isn’t eligible for the lightbeam trial. We are going to start a new medicine thats is going to target 2 of the genes that he expresses.

    We had to go round and round with the insurance company to get the medicine covered through insurance. A month supply is normally $8,000 and with the insurance our copay would be $800 per month out of pocket. We did some research today and found that Mark Cuban started a prescription drug manufacturing company where we could buy a two month supply for only $256. We talked to the doctor about it and they’ve used before. The insurance companies are ridiculous. Using Mark Cuban pharmacy it is not only way cheaper but we will have his chemo medication in 2-4 days. We want to share this with everyone so many people could save so much money when it comes to medication.

  • Pleuropulmonary Blastoma (PPB) Update 6/26/2026

    We came home from the hospital Thursday. He is off of oxygen. His 02 levels dip a little at night time. We are continuing the IV antibiotics at home for another week. They delivered an oxygen tank for at home but we are still waiting for the portable one. We cannot wait until he is fully better. Monday he has an appointment for a CT with contrast and then a follow up with oncology.

    In order to start the new clinical trial he has to have a clear CT and not be on oxygen. We have been waiting for this new trial to come out for the last 7 months, hoping it is the miracle we need.

    We see pulmonary on Tuesday. We still need to talk about the possible side effects of the new trial medication.

  • Pleuropulmonary Blastoma (PPB) Update 6/19/2026

    Latest update little man was not feeling good we brought him in to see the oncology team last Thursday and his o2 was down around 68-74. His pulmonologist was in the building and came to see him right away. They put him on oxygen and sent us by ambulance to the hospital. The plan was IV antibiotic and breathing treatments. They did an x ray in the emergency room it looked the same from the previous one. He has been between 1-1.5 litter of oxygen. It seems like this antibiotic and the breathing treatments are helping get a lot of the mucus up. First couple night he coughed all night. His heart rate has been high at times. He’s stating really good today still on oxygen. They wanted him to go for a CT scan but doing it under anesthesia would be risky. He could end up in the PICU on high oxygen support. We are so proud of him he did the CT scan awake for the first time.

    This his a huge milestone. He is so brave. Monday his oncologist came to the hospital to let us know the new trial medication we have been waiting for here and he could of started June 30th but one of the requirements is you can’t be on oxygen or have fluid in your chest. His oncologist is coming up with a back up plan. Tuesday he did the scan awake and Wednesday we found out when both the oncologist and pulmonary doctor came to see us at the same time. We knew it was either really good news or bad. Tuesday they came in to do an ultrasound because they seen fluid around his heart. The heart doctor said it looks old so they are not doing anything right now about it.

    Wednesday the oncologist told us they see a new tumor on the top of his lung. They see fluid but its not enough to drain at this time. They are not sure if it is disease fluid or pneumonia. This all feels like a nightmare. We need a miracle like now.

    Please everyone keep praying and help us command the cancer to be gone for good.

    Monday they will do another ultrasound to see if the fluid behind his heart changes. When he had his lung removal surgery they also removed the bag around his heart. His heart will absorb what his lungs will. He also on a steroid to help with inflammation. One thing I love about the steroids is they make him hungry. It works better than the appetite stimulates he takes normally.

  • Pleuropulmonary Blastoma (PPB) Update 6/5/2026

    Friday he had chemotherapy treatment and has not felt good since. Tuesday we seen the pulmonary doctor he sent him for an x ray. He said it is unchanged but looks like it might look little better. Same day we seen the orthopedic surgeon he said it is just muscle tightness and he can start physical therapy again. He said the swelling is from the trauma meaning the tumor the break and surgery. The other side could be from the tumor that is still there. He could only take so much of it out but hopefully it is dead from the radiation. We also found out good news the light beam chemo therapy trial he is able to start sometime in July. He has to see the heart doctor and a special eye doctor before starting also needs a set of scans. We were planning on doing a set of scans after chemo this Friday. The pneumonia is taking a toll on him but he is getting a lot of mucus up.

  • Pleuropulmonary Blastoma (PPB) Update 6/1/2026

    Friday we went for regular bloodwork to check counts and he ended up having a fever. They gave a round of antibiotics on the pump. Did another x ray and from what they can see it is still pneumonia. The pulmonary doctor started him on a different antibiotic. Hoping and praying it will get rid of the pneumonia. His cough is wicked at times. It is so dangerous for him to have pneumonia with having only one lung and the bottom lobe is already compromised from radiation and the tumor that was there. We see the pulmonologist tomorrow and orthopedic surgeon. His leg has been hurting and he has not been able to put pressure on it. The oncology doctor said he can start chemo on Friday this week instead of Tuesday depending on what the pulmonologist says and how we feel.

  • Pleuropulmonary Blastoma (PPB) Update 5/21/2026

    It has been a while since we did an update. He started a new chemo therapy regime. Week one he gets Gemcitabine and week two he gets Docetaxel and Gemciabine. Week three is bloodwork. Hes currently on day ten of cycle two.

    Two weeks ago he needed a blood transfusion and two days of the GCSF shots, those we do at home. He will probably need another blood transfusion tomorrow. On top of everything he has pneumonia he had a fever they did x ray at doctors office seen the pneumonia started him on antibiotics. Last week he had a fever we ended up in the emergency room saw that he still has pneumonia gave him two antibiotics on the pump 24 hours later we went back for the second dose.

    He had a pretty bad cough but that is starting to get better thank god. He on an antibiotic at home for a ten day course. He is starting to lose his hair but he happy about that. After cycle three we will do scans CT chest and pet. We are scared to death to say the least but trying to keep faith that this medication is working. The light beam trial should be coming out in June or July depending if this medication working or not will let us know if he going to start the new one when it comes out.

    Before they started him on the new antibiotic his cough was not good so his oncologist looked at the x ray and verified it is not being caused because of tumor it’s because of the pneumonia.

    Most people that would be bad news but for us that was a relief. He also takes a steroid days 7,8 and 9 to prevent one of the side effects fluid in the lung.

  • Pleuropulmonary Blastoma (PPB) Update 4/24/2026

    Last Friday we went for x ray the pneumothorax was gone. They did see a small infection said it could of been from not moving much because of the chest tube. Sunday we were in the ER he had a fever of 103.3 and a slight cough. The x ray that night looked good they gave antibiotics and nothing came back on the cultures or swob. His cough has gotten worse. Tuesday he started the new chemotherapy. Today they did more cultures, a nose swab and x ray. Gave him a dose of antibiotics. Todays x ray showed pneumonia. He is now on two new antibiotics and if his breathing changes we go to the ER. He can’t catch a break we just want our baby better and feeling back to himself and kick PPB cancer ass once and for all.