Tapering, Relapses and Chemo, oh my!

We were on track to taper Max's steroids to get him to a manageable level before the first of the year.  However with each taper we have slowly seen some intermittent symptoms breaking through.  A slight tremor here and there, some extra clumsiness, extra fatigue, more sleep disturbances, a little more crankiness, and a little more leaning on things and people to try to support himself.  Obviously symptoms like this in a two year old are to be expected, they were just showing up a little more than we would like to see. We finally got to a place last Monday where we actually dropped Max's evening dose of steroids and then it hit.  By Thursday Josh and I both were able to see the opsoclonus present in his eyes (if you recall last year this was so subtle that it fooled many doctors and Josh was never able to see it), the sleep disturbances were undoubtly worse, he was very clingy and cranky and then by Saturday morning he had 4 hours where he was physically unable to walk no matter how much we tried.  Sunday night he was awakened every 5 minutes crying and by 5am was completely unconsolable and cried until he vomitted, luckily we had a hem/onc PT checkup at the hospital Monday morning and he again was unable to walk, he chose to crawl and scoot on his bottom to accomplish all of the tasks in between the crying. All of our favorite hospital staff could tell this was not their charming little buddy who would run through the halls flirting with everyone. We were around a lot of people this weekend and we ran lots of tests to see if by chance he might have picked something up that might be an indication that a virus may be brewing, but nothing showed up in his blood counts.

The oncology appointment was next and she could clearly see the change from where he was prior to our last taper and said it would make sense that he would relapse at this point in his schedule so we decided to treat him with a pulse dose of steroids (6x the dose he was currently on) and we were able to get him in for an emergency infusion of IVIG yesterday to try to flush out some of the antibodies that are obviously attacking his brain.  If you recall we had a bad reaction in our last infusion and so we worked hard to track down a different brand of the immunoglobulin and we pretreated him with different medications and ran the IV's really slow to try to keep him from having a reaction.  It's still too early to tell if he will have a reaction or not since it usually hits day 3-5 so hopefully we can get through Christmas without any problems and by doing the infusion and the pulse dose it will also buy us 1-2 weeks until we can come up with a new treatment plan.

What about Boston?  Good news is that we got word at 6pm last night that our insurance company's Medical Director approved our request. Bad news is that at 7pm last night we got word that Max may not be in a place to be travelling right now.  So the Harvard Neuro-Immunologist has been in consultation with our team to give recommendations based on the information, charts, and tests, shared with him from us and our providers. However, we are still in the process of working on this.

So what's next?  this relapse makes it clear to everyone that the steroids have been masking the active disease that is still present in Max's body. We are working diligently with many specialists to come up with a new treatment plan, currently the only thing that everyone can agree on is the fact that Max will need to start a new more agressive chemotherapy type of regimen the first of the year.

How can you help?  Pray - We have a lot of coordination, research, decisions, questions, and praying to do in the next 2 weeks.

More to come later.....