Axel has been doing great!  We are in the delayed intensification phase of treatment right now, which is basically repeating the first phase we went through right after diagnosis.  This phase is supposed to be very intense and knock him down, but to this point he has done quite the opposite.  He was on steroids again for the first couple of weeks which is almost worse than the actual treatments....2year olds in themselves are unstable and crazy.... on steroids are almost unbearable at times!! But since being off the steroids, he has been full of energy, has gained his weight back (and then some), is happy, eating, playing and his numbers all look good.  Everybody reacts differently to the treatments and medications and we are lucky that he is reacting so well to this last intense phase. 
This is the phase that we have been doing the Mon/Wed/Fri appts so he can get the Erwinia, which is the alternate drug for the PEG that he reacted to. It is not as much as we originally thought.  He had 2 weeks of the Mon/Wed/Fri and so is accessed that whole time (has the port access needle and cord on at home), then he had about a full 2 weeks off from treatments.  After that 2 week break, last week was our last 'planned' overnight stay in the hospital treatment!!  He did have a lumbar puncture with sedation last Friday and will again this Friday which will be his 3rd so far this phase which is a lot of sedation for his poor little body, but he seems to handle sedation well.
Last week and this week he stays accessed for a few extra days and we administer chemo at home through his port. 
This phase has been a little hard on his nerves, but only seems to be really affecting his right leg.  He has seen the physical therapist a few times and we have some stretches we do with Ax several times a day and they seem to be helping or at least slowing the neuropathy he has.  This will go away over time and he should fully recover once we are out of the harder drugs for a while.
Axel will have his next round of Erwinia staring on the 19th and then go Mon/Wed/Fri the week of the 22nd and Mon/Wed the following week.  Then, if he makes labs on May 2nd, he gets to start maintenance on May 3rd!!!  That means we have made it through the hardest part and for the next 24months or so, we will only have appts planned for about every 4 weeks unless something would happen and he would get sick and require a hospital stay, or a change to his treatment plan.
This is very exciting for us and it is hard to believe that he has been going through this for over 6 months.  When you are trying so hard to just get through each day, each week, you sort of lose the concept of time for a while.  It will be such a relief to be able to slow down and let him be a normal 2 year old again (almost 3).  
Axel was able to attend State-A-Thon last Saturday with the whole family.  We were part of the AXiD team and so Pattie and Jimmie were both there to dance for Axel 😍!  He had a great time and did awesome making it about 4hours.  We were very surprised considering he had just gotten discharged from the hospital at about noon that same day. 
He is sporting a new hairstyle as this round has been a little harder on the hair loss than the others.  Mom wasn't quite ready to take that step, but Dad thought it was time and got out the clippers. We are slowly getting used to it, as are the kids at daycare 😊.  It seems to have made his sweet little smile shine through even brighter.
Fingers crossed we make it through April with no surprises and make labs on May 2nd..... maintenance can't come soon enough.....