[...]

Levi remains in the ICU but there have not been any big changes which is positive.  We are still waiting on some additional tests but most of the updates we have received have been encouraging.  They were able to get out his PICC line which was contributing to his infection.  He continues to need extra support and seeing all of the lines and tubes he is connected to is hard, but he somehow still manages to steal the show with his cuteness!  And, we had to laugh at the fact that he is now wearing yet another pair of boots.  But we don’t think he likes these moon boots as much as his monster boots so we’re hoping to switch him back soon.  
If things continue to remain stable, they might try to get him off of the breathing machine as soon as tomorrow.  We are certainly excited for that whenever he is ready as that would be another step in the right direction for our Amazing Levi![...]

Levi remains in the ICU as he continues to need extra support.  He is still intubated and on the breathing machine for now to give his body rest.  He is able to “breathe over” the ventilator meaning that there is a good chance we can start to wean down that support soon.  They were able to locate the organism causing his infection which is great news to allow the medication to be specifically targeted toward that bug.  Even better news is that the infection did not spread to the shunt that helps to reduce pressure on his brain.  Phew!  He’s had enough of those surgeries!  For now, he is on medication to allow him to rest despite the machines.  Beth and Zack were also able to get a little rest today and for that, we are thankful as rumor has it that 2 hours over four days is not quite enough.   [...]

Levi has definitely had a rough time and unfortunately has now been sent back to the ICU.  At this time, they have identified an infection in one of his lines.  Because his white blood cells are zero due to his treatment, he will need a lot of support as his body cannot fight the infection right now.  Due to the effects of the infection, he has also now been placed back on the ventilator/breathing machine to allow his body to rest as it was working very hard to keep up with the changes.  He will also be getting an mri of his brain and a CT of his abdomen as there are several other signs of illness and we need to rule out all of the possibilities to provide him with the most support.  We are putting our confidence in his care team to get him what he needs and even though we hate that he’s there, we are finding a little bit of comfort that two of his doctors tonight have seen him through many other tough nights in the ICU.  At least they all know how Amazing he truly is![...]

It's a big day for our boy -- Transplant Day!  Today Levi started getting stem cells, which means help is on the way! It will take a bit for them to start working, but little by little he'll start feeling better and we'll start seeing his sweet personality again. Of course, Beth and Zack are both exhausted but are relieved to be on to this part of the process. [...]

It has been a few very hard days for our brave and Amazing Levi.  He is now finished with all of the chemo and has today to rest before transplant tomorrow.  He’s tired, he hurts and there’s still a long road ahead, but at least he’s on to the next step.  Rest well today, little Buddy...[...]

No pic today but wanted to update everyone. The treatment is hitting him hard. He's having non-stop diarrhea and his skin is breaking down. He's on morphine for the pain and he has lots of fatigue. In our head's we knew it would be rough, but it's really rough seeing it play out. It's extremely hard seeing Levi go through this, even though we know this is how it works. Rescue day comes Friday. More to come on that, but for now, Levi and the crew (everyone involved with his care) need a little extra love and prayers.  Let's get to Friday gang.   [...]

Levi is starting Thiopeta treatments today. It's part of his chemotherapy that helps stop the cancer cells from growing. It's pretty intense and EVERYONE (including mom and dad) needs to be masked, gloved, and gowned. Also, as part of the treatment, Levi needs to take a bath every six (6) hours. The drug is very irritating to the skin and can cause burns if it's not washed off. It comes out through the skin as it works, it's not a topical treatment. [...]

[...]

Levi is still doing well and is ready for day 3 of chemo.  He’s wearing another set of boots today - we call these his ninja boots.  He does not like these as much as his monster boots though.  Because he was immobile and in bed for so long after first getting sick, he has a very hard time putting his feet flat.  These boots/braces help to stretch everything out to make it easier for him over time.  On the schedule for today is more chemotherapy and the Iowa-Wisconsin football game.  The view from his room is great - even better than the picture shows... but we’re not sure the players are looking forward to all of the snow![...]