Levi is back in the hospital. Just four days after being released, he had to return because he was unable to get his medications or even stool softeners down, and he was starting to feel like he could be developing another bowel obstruction.
We had also started noticing that Levi was looking a little yellow, so the doctors drew labs to check what was going on.
One of the things they checked was his bilirubin. Bilirubin is a yellow substance that the body normally processes and removes through the liver. When the liver is not functioning properly or something is preventing bile from moving through the body normally, bilirubin can build up in the blood. This can cause the yellowing of the skin and eyes known as jaundice.
Levi’s bilirubin had been in the normal range, but it quickly rose to 2.2 and then to 6.3 overnight. The doctor that night told us that, honestly, things looked very concerning “on paper.”
The following day, Levi had more labs and a CT scan. We then met with the hospital medicine doctor, who collaborated with oncology to try to figure out what was causing these changes.
His bilirubin went up slightly to 6.6, but because the increase had slowed, they began looking closely at whether his TPN could be contributing.
For those who may not know, TPN is intravenous nutrition. It gives Levi the calories, protein, fats, vitamins, and other nutrients he needs directly through his bloodstream when his digestive system is not able to tolerate or absorb enough nutrition. While TPN can be lifesaving and necessary, it can sometimes put stress on the liver and cause liver enzymes and bilirubin to rise, especially when someone has been receiving it for an extended period of time or is already medically fragile.
Because of that possibility, they decided to stop his TPN and give his liver a chance to recover.
The CT scan did not show a significant change from his previous scan, which initially sounded hopeful to us. However, the oncology doctor explained that even if there is no obvious change visible on the CT, there can sometimes be microscopic progression or changes that imaging cannot clearly show. They are concerned that something on that level could potentially be affecting Levi’s liver function.
This is especially important because Levi needs his liver to be functioning well enough in order to receive chemotherapy or other cancer treatments. Many treatments are processed through the liver, and when the liver is significantly impaired, those medications can become unsafe because the body may not be able to process or clear them properly. The risk of serious toxicity and complications can become too high.
Yesterday, Levi’s bilirubin rose again to 7.4. To be fair, they had only stopped the TPN a few hours before that lab was drawn, so the oncology doctor felt that it was important to give his body a little more time before determining whether stopping the TPN would make a difference. It’s the perfect storm right now because he can’t get anything down and therefore it’s hard to get the bilirubin out because typically it comes out in the stool. He is able to urinate small amounts of billi
but again he’s not drinking anything by mouth and his bowels are so inflamed from the cancer there that things aren’t moving as they normally would.
So right now, we are waiting on this morning’s labs and hoping so hard that his bilirubin has started to come down.
High bilirubin levels are concerning not only because they can be a sign that the liver is struggling, but because when the liver is unable to properly remove substances from the blood, toxins can build up in the body. This can contribute to a condition called hepatic encephalopathy, which can affect the brain and cause confusion, difficulty thinking clearly, changes in behavior, extreme sleepiness, and other cognitive changes.
That is one of the reasons we are trying to get Levi’s bilirubin and liver function under control as quickly as possible.
The oncology doctor has been very honest with us that if Levi’s liver is not functioning well enough, he will not be eligible for further treatment. So, right now, that is where we are. Waiting. Watching the labs. Hoping that stopping the TPN gives his liver a chance to recover and that we can get Levi to a place where he is more comfortable and hopefully eligible for whatever treatment options may still be available to him. We have several hopeful studies in the works.
At the moment, the high bilirubin and everything his body is going through have left Levi *extremely exhausted, uncomfortable, and having a difficult time cognitively.
Levi asked me to let everyone know that he has been reading your messages. He sees your love, your prayers, your encouragement, and your support. ❤️ But responding takes an incredible amount of energy right now, and he simply doesn't have the ability to respond the way he normally would—or the way he wishes he could.
He has so many people who love him, and while that love means everything to him, it can also become overwhelming when he feels like he cannot form a response or get back to everyone individually.
So if you have a message, well wishes, encouragement, prayers, memories, or just some love you would like to send to Levi, please leave it here in the comments. I would love to read your messages to him when he is awake and able to listen. ❤️
Levi is fighting as hard as he possibly can.
But he is also so very tired.
Thank you all for continuing to love him, pray for him, think about him, and stand beside our family through all of this. We will update everyone as soon as we know more about today's labs.
Please keep hoping with us. Please keep praying for Levi. And please leave him some love below so I can share it with him. ❤️