Friday, August 10th

Sorry for the late post. Today went well. Otto continues to have no fever and nothing has grown on his blood cultures. He is officially thought not to have a bacterial infection. In other words, it could have been viral or my thermometer could have been totally off. His ANC continues to be at zero and we are waiting for that number to go beyond 200 in order to be discharged. We still are in the books for a bone marrow biopsy in one week with a soon to be follow up of Round 3.

The day overall was a funny one. We walked around the 7th floor for while. Otto and his friend decided to take a detour into the playroom so that they could do an art project with Brian from Hole in the Wall. Our wonderful friend from Child Life, Teresa, made sheriffs badges and a wanted poster for Otto's Western Day. It was our theme, however, due to the small size of the room we are in, we decided to postpone this one with friends until next Friday when we are home.

What does one do when they are trying to pass time at Yale? Parents have blood pressure competitions, of course! Lowest BP wins!! LOL!

Hoping all in well in the world outside Yale!

Mark, Leigh, Otto, Tess and Lulu

Comments

Friday, June 22nd

Good morning! Otto wants you all to know that he's doing well. He had another great night, and we are over the moon happy that he has been fever free for 18 hours. Mark went to rounds this morning with the team, and Otto's counts continue to look really good. His white blood cells are continuing to dwindle (which is what we want) and his body is preparing itself for the ultimate fight. So, that's pretty amazing news for us, considering what was dropped on our laps Friday afternoon. I know that it is most likely that people are wondering if we are in good hands. I will tell you that we are. The doctors are on top of everything - from what is currently going on to what could happen - and have a plan to counter it all. We are incredibly lucky to be surrounded by individuals whose life's passion is researching and helping kids with AML to beat it and succeed. With that being said, we see these individuals from time to time throu...

Wednesday, Thursday and Friday, October 24th, 25th and 26th

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 researche...

Sunday and Monday, November 4th and 5th

Good evening, all! Otto has had two nice days in a row. He's shown more energy and is taking walks, chatting it up with nurses and enjoying hanging out. We have also had a few visitors over the last few days. That has also been nice. We heard back from Boston and we will be having a phone conference with one of their oncologists that have reviewed his records. Although our doctor has been in contact with the one in Boston along with warning us that we will most likely hear the same diagnosis and treatment protocol from her, we still need to talk to this lady. We just need to know if there are other alternatives to the path we are currently on. We do say it often, but it bears repeating. Thank you to each and every one of you who find the time to send love, prayers and positive thoughts our way. We really do find it helpful, more so Otto. That's part of where we feel he finds his strength to fight. He ...

Thirty Days and Waiting

Search This Blog