Today has not brought relief as we were hoping it would. Josh got his first dose of the Retuximab last night and it did not seem to have improved things. The good news is that they are pretty sure he doesn’t have a bacterial infection, even from the surgery. The bad news is that his swelling got worst and started closing his airway passage. They aren’t sure why the Retuximab did not provide any relief. The medical team decided to move Josh to the ICU because of the danger of his airway completely closing. They wanted to play it safe and keep a better eye on him at the ICU where he will have a nurse almost one-to-one. They also decided to put a breathing tube preemptively, because it would be better to do it now than if his airway closed any further.
The past 3-4 days Josh has had CAT scans and PET scans and surgery so he has been restricted from eating and drinking. Now, with the breathing tube he can’t eat at all; therefore, they also put in a feeding tube. He’s got all kinds of devices and it is extremely uncomfortable, so they are sedating him somewhat. He wakes up every now and then but he can’t talk with the tubes in his mouth. He is pretty good at communicating through hand gestures though. When they were taking him to have the CAT scan he signaled with two hands together. Since they were pointed down, I thought he had to go to the bathroom and he kept nodding his head as to say no. One of the nurses had understood this signal earlier but had left the room. They went to find that nurse to ask her what the signal meant and she said, “pray.” Bless Josh’s heart! I got to pray aloud for Josh before he went to have his CAT scan done.
The different medical teams are trying to put their brains together to try to make sense out of what’s going on. They highly suspect it to be PTLD as a result of the Epstein Barr Virus (EBV) that they’ve confirmed has been increasing in his body. If it is PTLD, they are saying it’s very aggressive and his FA makes it difficult to treat with chemo. While, they still are not positive it’s PTLD, they are pushing to get an answer tomorrow afternoon the latest from pathology since they aren’t open over the weekend and it’s an urgent need. They continue to run all kids of tests to try to determine what the root cause is. It may have to do with Josh’s genetic disease called Fanconi Anemia (FA) which caused his MDS in the first place. FA increases the likelihood of cancers and tumors, and PTLD would be like a form of cancer. At times it’s difficult because not all doctors, like the ICU team, know a whole lot about FA. I am thankful that the Dr. that specializes in FA is overseeing all of it. Moreover, I’m thankful that God is overseeing all of this! It comforts me to know that God is the Great Physician and he knows all things! In his book were written all Josh’s days, before there was even one. The social worker came to talk to me and walk me through the process of moving Josh to the ICU. In God’s kindness, she is also a believer and has been praying for us. I was able to cry with her away from Josh so that he wouldn’t worry about me. It’s still so so hard to watch Josh go through all of this! Yet, it’s even harder for Josh going through all of this! Naturally, his anxiety level has increased, which also hasn’t helped with his breathing trouble.
Please keep the children in your prayers. Josh’s dad is flying out tomorrow morning to help with the boys and to be there with Josh. Our prayer is that things start turning around for Josh toward recovery and for him get to come home to us! Our hearts ache to see him suffer like this. Thank you for your friendship and partnership with us through prayer to our interceder Jesus Christ, from whom we have direct access to the throne of God! His will be done, his kingdom come!