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4/21/2017 Latest post:
April 4th and 5th, Xander was having some pretty intense abdominal pain so we ended up in the ER both nights. The pain was where the appendix is located so we were concerned he had appendicitis. While we were there he started walking around and jumping so the Dr was fairly certain it was not. They took some X-rays and he looks to be a bit constipated (sorry if TMI) so we went home with direction to put him on Miralax. Thursday he was having intense pains again and could hardly sit up and would not walk or stand up all day. We brought him back to the ER and eventually got a CAT scan done. The doctor came and told us about the spots on Xander's liver and that he had called down to the Children's Hospital and they were expecting us in the morning and to pack a few days worth of clothes. He gave us the Ok to go home and spend the night together before heading down.
When we arrived in Milwaukee, Xander was admitted to the oncology unit. The doctor came in and told us with his history (born at a low birth weight) he likely had Hepatoblastoma but they would need an MRI to see how involved the tumors were with the blood vessels were, see if the cancer has metastasized to his lungs and/or lymph nodes and biopsy to confirm what the doctor suspected. So they put him under and did them both right away. As alot of you know, the biopsy did come back as Hepatoblastoma, which is a type of liver cancer found in young children, and the MRI showed it metastasized to his lymph nodes.
On 4/9 Xander had his port placed in the morning and started his first chemo that evening. The type of chemo he is receiving runs over the course of 24 hours and then he will be on 24 hours of IV liquids after that. This is done weekly with the occasional week off for three months so we will be spending at least 2 nights and 3 days in the hospital for a while. Unfortunately some of the more serious side effects of the chemo he is on are hearing loss, so we will he getting a baseline hearing test done and keeping track of that. He is also at a higher risk of developing skin cancer and leukemia later as a result of the drugs.
After 3 months, the doctors will redo his scans and see how far the tumors have shrunk and decide if they will be able to cut any remaining pieces out or if he will need a liver transplant. The MRI he got could not definitely show if the tumor was involved with the blood vessels that go to the liver or just pushing up against them. The way things look right now, the surgeon who looked at his MRI is preparing us for a liver transplant. That process has already been started as it is long and you can be put on the list before you are ready for the organ and you get credit for the time that you have been on the list when an organ becomes available. If after three months it is decided he needs a transplant, we would need to make sure the chemo killed all of the cancer in his lymph nodes, if not, he would need surgery to remove that before he would be eligible for a liver. Once he is ready for a transplant, we will have to wait for a donor to become available and he will continue on chemo for as long as that takes for a liver to be available. After the transplant he would also continue chemo for a period of time to make sure all of the cancer is gone.
Xander is much more comfortable now, he can walk around, sit up and wants to play. We hope that will continue.
We expect he will end up with a feeding tube sooner than later as it is difficult to try to get him to take enough liquid and calories in. He has never been a good eater but less so now with his stomach smooshed by this liver.