Friday, August 3rd

Good morning from sunny (and humid -😖) New Haven!

We are hanging out at the Clinic at Yale today with our team of Hem/Onc nurses. Otto's numbers continue to trend down and he is in need of platelets. We couldn't believe that his platelets dropped as much as they did. It totally explained the amount of petechia we saw over the last two days. For now, we are sitting here for the next two hours as Otto gets his transfusion.

Otto's ANC is currently at zero, which means we are now waiting for it to rise. We believe that when it reaches 500 again, we will be sent back to inpatient for Round 3. We are saying our prayers that this transition happens sooner than later, however, we also know that when his body is ready, it will be ready no matter how many days go by.

We would like to send out a HUGE thank you to all those who have donated to the Go Fund Me page in Otto's honor. It means the world to us. We would also like to send a thank you to all of those who continue to share the link to the Go Fund Me page. It's very heartwarming and we are continuously grateful!

Sending you all so much love!

Mark, Leigh, Otto, Tess and Lulu

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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 researched and reached out to another hospital. The particular

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 throughout the day. Our ultimat

Monday thru Thursday December 3rd - 6th

Hello Everyone, Last chance to get an Otto Strong T-shirt if you haven't already. Here is the link: www.rsvpinvitations.net/shop. Order by Sunday. It has been a long difficult week. Otto's nights are still restless with bathroom trips, occasional coughing, nose bleeds, and nausea. We've peeled back some meds to help relieve some of these side effects making him more comfortable and we've increased his pain medication to alleviate his pain. His baby tooth bleeding has finally gotten under control after several days trying various techniques from some starch/potato powder, gauze with pressure, amicar(spelling), "magic mouthwash", gel gauze, to some surgical glue - sorry, that was not too specific with the medical names, but rest assured it was a lot of attempts and failures, but finally not bleeding! Throughout it all we were down as low as a count of 2 for red blood cells and 8 for platelets. Otto received several bags for support. Monday thru

Thirty Days and Waiting

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