We finally got to go home late Wednesday night after a transfusion (6th one, so far). They didn't figure out why he was having the issues, but they sent us home since they weren't getting any worse. He wore a heart monitor for the first 24 hours that we took to the cardiologist to review before we meet with him in 2 weeks.
On Thursday, we had an appointment with Dr. Rosen (oncologist). We got the results of the chromosome tests which confirmed that Joey is in the low risk category - very good news. There are 4 possible: very low, low, standard, and high. He gave us a document that lays out the 2.5 year treatment plan for the low risk category. It explains the treatment week by week. I love to plan, so I was very grateful. Consolidation therapy begins on Nov 22, so he'll get a break and should be feeling more normal soon. I'm amazed at what they have learned about the treatments. There are a lot of specifics - certain meds at the right times, etc. It's just amazing that they have figured all of this out.
That was the good news, and now for the bad: Jon was told by his boss on Tuesday that he has missed too much work to be with Joey during all of these unusual hospitalizations. He gave him 3 options, of which, the least worst was a layoff. The other options would have guaranteed no income for the next several months - at least the layoff will allow for unemployment. It was another devastating blow. They had talked through everything a couple of weeks ago and Jon thought they each had a good understanding, but there was obviously a miscommunication somewhere. To make it worse, Jon has been accused by some people of "wanting" to lose his job. We are completely confused how anyone could think that to be the case. Why would we want that to happen in the middle of everything else? We're going into winter, which means that other landscaping jobs will be very scarce. There is a very good chance that Joey won't be hospitalized as often in the future - everything we've been dealing with is very unusual. His boss said that Jon can't guarantee that he won't continue to have complications.
(Note: I'm not going to publicize the name of the company here. If you happen to know where Jon worked, please don't slander their name. I'm very unhappy with the owner for making this decision, especially now, but there are many other employees there who could be harmed by publicizing this issue and trying to convince others not to do business there. I don't want to make a bad situation worse.)
We're confident that we'll be ok, but it takes a little while to get past the shock and hurt. I think tomorrow is going to be the worst day for Jon. I fully believe that this is part of God's plan for us. Just because we don't understand it doesn't mean that it's not under control by Him. There will probably be something better for Jon around the corner.
As always, we are very thankful to everyone for all of the kind words, donations, fundraisers, prayers, etc. I can't imagine going through this without you!
Here's Joey in the hospital with all his monitors. He tried to ride a tricycle to the playroom but got put back in bed b/c his heart rate went to 200bpm. After resting, we took him to the playroom in a wheelchair, but he was determined to drive it himself.
Joey's hair has been really different, and we realized on Thursday that it was starting to come out a bit, so Jon took him to get a haircut. He doesn't look very happy in the picture, but I think he actually had fun. He got to buzz off Jon's hair too. He has lost some of the swelling in his face, but he still doesn't look much like the Joey I know.