Team Isaac

Team Isaac Isaac beat cancer once, and he's going to do it again. But it's going to be hard. Again.

11/12/2025

Isaac is still on the ventilator and requiring a lot of support, there are still no answers. At this point, he's been on narcotics so long that we'll have to have methadone when he comes off, to prevent withdrawals. Also, if we are not moving forward, we are moving backward. His chance of full pulmonary recovery decreases all the time. So we are going to try some new things we've been keeping in our back pocket, because only now are the risks acceptable for the potential gain. We have to push forward.

11/11/2025

Isaac is still on the ventilator. Almost all of the tests are resulted, all are negative. It's very frustrating for us and all of his doctors. The only goal for today is to let him rest and let his lungs heal. Just maintain. Just keep swimming.

11/10/2025

Isaac is still on the ventilator, BUT he is calm and cool and mostly cooperative. He's using a white board to write messages to us, and I am so damn proud of him. Also, one of our favorite people in the world came to see us, and just continues to be a bright spot even in our darkest times. My parents have just stepped right up and are taking care of my other babies, so Andrew and I can be here while Isaac needs us, and we need him. So many people have helped in so many ways, and we are deeply grateful for our village.

11/09/2025

Isaac was doing really well on Saturday at noon, and was extubated. He was put on oxygen, couldn't maintain his O2sat, was on bipap but was just struggling and exhausted just from barely breathing. He was mad at the world, and at us. In the middle of the night, the care team agreed he needed to be intubated again, put back on the ventilator. So now our baby is sedated but it has been a constant struggle to keep him far enough under that he's not in distress, but also keep his pulse and BP within normal limits. It's a huge step backward, square 1 is where we live.

What a difference a day can make. Yesterday was a much better day than today.
11/07/2025

What a difference a day can make. Yesterday was a much better day than today.

11/07/2025

You have all done so much to support us, thank you. I've had a few requests to post our Venmo again, so it is jill-reynolds-68. Thank you guys.

11/07/2025

After his procedure today, Isaac had trouble coming out of anesthesia and could not breathe well enough on his own. So now he is on a ventilator to assist him in breathing, and is being very closely monitored in the ICU. He is on meds for infection, blood pressure (to keep it up), and sedation and a paralytic. And probably other things. He had one extremely terrifying episode--extremely--but with the quick action of a couple dozen folks, he was able to recover and eventually reach a stable place. It is incredibly scary. He is still very much not okay, his lungs are in very bad shape. We are terrified. Please send all the positivity you can.

Tomorrow Isaac will receive anesthesia and undergo a procedure called a bronchoalveolar lavage, to obtain a sample of hi...
11/06/2025

Tomorrow Isaac will receive anesthesia and undergo a procedure called a bronchoalveolar lavage, to obtain a sample of his lung contents and analyze them to definitively diagnose his PJP and get a very detailed picture of the environment of his airway.
Until then, Legos!!!

We have an answer! Isaac has a fairly rare fungal infection in his lungs. PJP is known for preying on the severely immun...
11/05/2025

We have an answer! Isaac has a fairly rare fungal infection in his lungs. PJP is known for preying on the severely immunocompromised, as in cancer and historically, HIV patients--but there are good treatments and we are so thankful for our team, family, and community for helping us through all our seemingly endless series of bumps in the road.

11/04/2025

Isaac has been admitted, is receiving blood, platelets, and IV antibiotics. He is also on oxygen since his sats were only in the 80's. Many tests, no solid answers, my poor baby has really had enough.

11/04/2025

Isaac's temperature is 102.3, he has a headache, cough, and chills. Children's Mercy here we come.

11/01/2025

Isaac was Deadpool for Halloween. If you didn't know, that character has cancer, so he nailed it.
Last year he was the Grim Reaper, and I had to explain to him why he couldn't wear his costume to his appointment at Children's Mercy Oncology Clinic. Even after he understood, he thought it'd be funny. This kid has a wicked awesome sense of humor. 🤣🎗️👻

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