A little light

There was a glimmer of light in the day when I was able to meet with our Oncologist.  I had forgotten that I had scheduled the kids' quarterly check up for today.  I noticed it on my calendar just 10 min before the appointment so I rushed over to his office.  I decided to leave the kids at home and just have some time alone with him. 
    It was a good visit.  We talked about the lack of communication, a care plan, a prognosis and all those things that have been on my mind and causing worry.  He acknowledged that his staff knows all about leukemia but nothing about SDS.  He said almost word for word but I said over a month ago so it felt good that he understood the isolation we feel.  He gave me all his contact information so now, we will just bypass his staff.  I really appreciated that.  He also feels that it is pointless to have 5 different specialists all working on their own thing instead of everyone interfacing with each other but to make that happen will be next to impossible.  How do you get everyone on the same page?  I'm not sure how to accomplish that but at least I'm not the only one thinking it is crazy. 
     As for a plan...We don't have one!  Seriously, we really don't.  I did learn a few things I didn't know about IVIG.  Because it is a blood product that comes from so many different people, over time, it can just stop working because the body begins building up antibodies against all 'donors'.  At least this is how I understood him.  So, the more infusions she has to have, the higher the risk that it will just stop working, then we are left with a smaller arsenal of things to sustain her.  I don't want that to happen, we will need this treatment down the road as her marrow becomes more depleted and sick.  We decided that we will try to stretch the time between infusions to 4 weeks instead of 3, even if her platelets are low.  However, if they are at 80 but she is having nose bleeds or bleeding gums, then she will need to be infused sooner.  If they are at 30 at week three but there is no bleeding, we will try to hang in there until week 4 when she will receive the infusion. 
     I asked him how long he felt she would be suffering with this.  Of course he isn't God so he really couldn't predict.  We hope that her body will go into spontaneous remission but realistically, it could go on most of the year or never go away.  We've already been at it nearly 3 months!  He does want her to get a Port a Cath so that will be done next Thursday when her counts will be above 100, hopefully.  It will be an outpatient procedure and done at the local radiology clinic. 
     We are seriously going through some big time growing pains as we try to find a new normal and cope with this past year and the advancements of the disease that I was not prepared for.  The kids were not prepared for.   I would say we haven't been coping very well lately but I'm not really sure how to combat that.  Maybe time is the only thing that can make this better.  I am so glad that I was able to visit with our Doctor, it made all the difference in the world just to be understood even though he couldn't fix anything.

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