Jennie's MS Journey

Hi Everyone,

I have a new update today so thought I will fill everyone in before I forget everything I was told. As I stated in my previous post my white blood cell count had dropped last week. I attributed the decline to a small cold and fever I had a few weeks prior but it turns out to be a bit of a setback in the recovery process. They have gone even lower from Tuesday. Today they ruled out all infections and so this is not do to infection (weirdly we were hoping for an infection somewhere).

Because my disease was so moving so aggressively, there was some discussion if I could possibly of had something called NMO. We knew this was a possibility, and so to eradicate either disease or both I was treated with an additional day of chemo and on either end of the chemo days I was given a high dose of a drug called Rituxan. This is widely used for blood cancers and we researched all side effects and it did seem and is considered generally well tolerated.

There is a very small percentage of people who receive Rituxan that develop something called late onset Neutropenia (LON). This typically occurs a few months after the last dose and likely but not definitely
will persist for 3-8 months from the time you go neutropenic. So…..that’s not ideal because we have to be very vigilant about germs as if I just returned home, technically my WBC is even lower than than time. So until they rise I can no longer go to the gym, restaurants, malls, movies, have kids over, be around dust or flowers etc. Of course short term this is all doable and not the end of the world but discouraging, stressful and dangerous. Getting an opportunistic infection or really anything at all gets complicated and scary when you have nothing within yourself to fight with.

So…I will start the neupogen shots again tomorrow or Wednesday and the hope is it will bump them at least a little bit but the bummer is last time I had some pain from it. If that doesn’t get things to a reasonable level I will get IVIG. The only positive I can dig up on this is THANK GOD this is all reversible and does not effect the success of the transplant! So a few more months of being a loner and staying home and hopefully I can put this behind me and start living normally and without any long term meds.

Also, I must say my kids are just the best sports ever! We had to cancel ALOT of summer plans and they were just all so cool about it and we are working together to find some safe things we can still do or drive to to break up the monotony. When this is all done they are going to the coolest place I can conjure up!

Thank you so so much to my very awesome and amazing friends and family for sticking with me with this!! I hear a lot of people say you really find out who your genuine friends are when you get sick or go through things and I think that’s absolutely true. In my case (for the most part) I’m just surrounded by love and support and I hope I am thanking and appreciating everyone enough!