So many things have been happening since we last posted. There have been many meetings, discussions, and realizations we have had.
A few days ago, Otto started showing signs of bleeding. The doctors have decided it could be one of two things. It could be related to his infection in his intestines or it could be a sign of the fungal infection spreading. After reviewing scans and speaking to the surgical team, the team feels this is related to the fungal infection.
The fungal infection is one that is extremely rare. It is also one that is very difficult to treat. We were hopeful that with a building ANC alongside the three antifungals, that Otto's body would be able to contain the fungus. Instead, his body is showing signs of it spreading. The team will send him for another scan towards the end of next week to see if there are any differences in size of the three masses on his liver.
We have also researched and reached out to another hospital. The particular hospital has expertise in liver surgeries and childhood cancer. We just sent his records, scans and slides. We are waiting for a response in regards to what they see and think.
Due to all the bleeding that Otto has been enduring, he has continued to get transfusion after transfusion. He has been allowed to return to drinking fluids and eating soft foods. This has put him in happier spirits for sure.
Although we have been given some pretty rough news, we continue to pray, to stay positive, for that glimmer of hope remains.
We continue to give thanks to everyone who continues to send cards, donations, gifts and such. We have had some nice visits from friends and family. Otto was greeted by our awesome neighbor today with a gigantic carved pumpkin. It was a nice tribute to the Red Sox! Our Make a Wish family stopped by as well, with all sorts of fun things. Otto was the lucky recipient of a sign basketball and hat along with a heartfelt message from our favorite college basketball coach, Jim Boeheim.
We also continue to be grateful for having such amazing care from a staff who loves our kid. The nurses, especially, always make it a point to drop in and touch base (even if Otto isn't on their caseload for the day). They know how to make a family feel loved!
We are taking this time to spend as much time as we can as a family. We are looking forward to gathering with friends to watch the big games over the next few days.
Please continue to support us through prayer and positivity as we walk along this rough patch in the road.
With so much love and gratitude,
Mark, Leigh, Otto, Tess and Lulu