Christian's PPB Cancer Journey

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.

We need a miracle very soon. It was a blessing in disguise he hasn’t been able to swallow the new chemo pill. His oncologist suggested placing an NG tube and doing a new CT scan to get a new base line. Thank god we did last Thursday they saw an air leak in his left lung. With in an hour they got a team together and places a chest tube. They also found a few new spots on his lung. They took out the chest tube today and we came home. Tomorrow morning we go back for another x ray to follow up and then physical therapy. We have three doctors from three different hospitals working together trying to find a cure for our son. There is a new chemo medication he can start for now till the light beam trial comes out in June and we hope and pray he can get it. They think the light beam may be promising. We just want our son to be healed and live a long happy life. I can’t explain the pain and fear we live with everyday. I would not wish this on my worst enemy. It is heartbreaking seeing all the kids we see fighting cancer. Its just not fair.

He did amazing in physical therapy this week. We are so proud of him. Today he started the new chemo pill at home for ten days and then next week will have IV medication in office and then ten days off. His strength is incredible. We love him so much. He brings joy wherever he goes. He makes us laugh and fills our hearts with joy. He so smart for his age.

We saw the orthopedic surgeon today and had x ray done to follow up from his surgery on his femur. He said everything looks great. He can shower, take a bath, go swimming. He starts physical therapy tomorrow. He still can’t walk on it but that can be normal. He said when he’s ready to walk again he will and he will get full motion back with time. His leg is still swollen but that is normal it can be for another couple months.

We met with the oncologist yesterday and the plan is to start the new chemo therapy March 6th. The pathology report came back the tumor they were able to take out of his leg came back positive for PPB cancer.

Last Friday was surgery day they ended up placing a rod from the lower part of his femur up to about midway up his femur and six screws.

Surgery took about three and a half hours. They took the catheter out that day and because of the epidural still being in he wasn’t able to use the bathroom. About 2am Saturday the nurses tried to place a new catheter two different sizes they couldn’t get it. At 4am the urologists came in and placed a new one. He was getting sick all night.

Finally Sunday he got his appetite back and was feeling better. Later down the road they may have to go back in and change the rod out as he grows.

Monday they took the catheter out and he was able to use the bathroom. Saturday they took the epidural out. We visited with the puppy that comes to the hospital he was happy he missed his Rubble. We checked the portal for the pathology to see if it came back yet from parts of the tumor they took out and seen his surgeon scheduled an appointment for next week out of the blue. We seen him the day of his leg surgery he was on standby incase anything went wrong and never mentioned anything about it. We are worried now we have found out whenever a doctor wants to see you in person its never good. But we are staying hopeful it is nothing.

Last week being cleared for surgery. Pet scan results came back there is a spot on his pelvis that is new but could be nothing.They will do follow up scan .The same area around the clips in his chest is still lighting up. The tumor in his leg is still lighting up. Next week we speak with his oncologist about the plan for treatment going forward.

We met with the orthopedic surgeon today and the plan is to get a PetScan this Wednesday and if everything looks ok and there are no changes that would complicate doing surgery then surgery will be this Friday. If he was to stay in the cast it could be for atleast 8 months and there is no guarantee it would heal properly and he may need surgery anyways. What he has is called a pathologic fracture. The tumor is in between the bone where the fracture is that is why it could take so long to heal on top of being compromise from radiation. They will make small incisions for the surgery, depending what it looks like they will either put plate and pins or a rod and pins. They will take out most of the tumor and send it out for testing see if there still live cancer cells and if any mutations they can target with therapy. We will be in the hospital for a couple days but he should be able to walk the day after. His main surgeon will be on stand by if any complications happen.

We met with the oncologist today he wanted to talk to us in person. He let us know that the last scan showed some small spots on his right side where the lung is gone and a half cm spot on the left lung again. He is thinking it is more cancer.

He wants to focus on his leg right now. We are hoping he doesn’t need surgery but we have already talked with his surgeon in the city and he wants to be in the room incase anything happens.

The oncologist and surgoen in westchester would like to see an updated PetScan to give them more information. The medicine was finally approved.

He will be the first to take it for PPB cancer. He hopes it works but there is no proof that it will. He said we need to start thinking about quality of life and will have us meet with at home hospital staff.

He said no kid with PPB that had a relapse has lived this long. Its the conversation that makes you sick. We are not going to lose hope. He wants us to keep doing things with him like we have he said we take trips and do things he didn’t know could be done in one day. He loves making memories and we love making memories with him.

He is our entire world. We meet with the orthopedic surgeon Friday then the other orthopedic surgeon next week. We pray that he will win this fight.

Today sucked we saw a different orthopedic doctor yesterday. They ended up resetting the fracture and put a cast on his leg. He had new bone growing back already so if they would of did this last week maybe it would of been healed by now. It’s a good thing he was sitting on my lap because it was hard not to cry while they were resetting the break. We still can’t believe the tumor fracture his femur. He has been in a lot of pain. Hopefully it will start to heal fast and he won’t need surgery.