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

Comments

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

Wednesday, June 20th

Hi everyone, Hoping this message finds you all well. We are ever so grateful for the continuous messages of prayer, positivity and love. Otto is a very lucky boy to have all of you in his world. So, we got back the results of his spinal tap and we are incredibly happy. There are no leukemia cells that appear to be in the spine. What does this mean? Three less bags of chemo to have to take during the 10 day period!!! Yesterday was Day 2 of chemo. He had one dose in the morning followed by two doses in the early evening. For the most part, his body handled them ok. He's still getting fevers here and there, but thankfully Tylenol kicks in to make things better. Today is Day 3. We are looking at 4 doses throughout the day. One thing I am noticing is that chemo makes you tired and sleepy. All that is telling us is that his body is taking it's time healing itself. And we are just fine with that! Two days down and eight more to go! We've got this,

Thirty Days and Waiting

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