Rona Updates: We need you

July 15, 2023

I've gotten feedback that my updates are generally quite positive and optimistic. Sometimes I don't share the hard stuff because I don't feel like rehashing it and other times it just feels like too much. But this week is different.

We are at a major crossroads right now. Rona has not engrafted. Her CMV viral count, which spooked the team at 700, is now 1.2 million. It is in her lungs. She has another very dangerous infection that has reemerged this week. I've lost count of the medications she is on and know that two are being given for compassionate use, meaning they aren't approved for kids and/or in the US but the risks of her getting them are lower than the risks of her not getting them. It is the team's worst-case scenario. 

She has had a fever at or around 104/105 all week with bad rigors and a respiratory rate that is through the roof. She cannot be out of bed for very long. She sleeps on a cooling blanket to keep her cool between doses of Tylenol. She is on an average of 4-8 medications running simultaneously. Last weekend, she was on morphine for the pain. Next week, she is getting medical marijuana. She is uncomfortable. Her mind and little body are so, so tired. Her team has suggested we speak with palliative care in case the viral counts don't come down soon.

We are going for engraftment one more time in the next 1.5 weeks, as soon as the radiologist can get us on the schedule. She will have a few days of light chemo and one day of full body radiation in advance. I am being collected for new stem cells on Monday. This is very likely our last shot to save our little girl. And we are up for the fight, but the truth is we are also so, so tired. 

So this is where you come in. We need some miracles right now. We need prayers, positive energy, appeals to any higher being to which you ascribe. We need a boost in morale for every person in this room. And we need you to keep it up until she is on the other side of this, which could take months.