Some moments I am struck dumb by how unbelievable this all is.  We had so much hope for the auto stem cell transplant, and we are grieving the loss of having a remission.  We knew that someday we would have to revisit treatment, but we thought we were buying some years with the transplant.  Years to watch our children grow.  I cannot tell you how hard it is to put this behind us and move forward with renewed energy.  It is good to lament this--very healthy and necessary--however we cannot live in the lamenting stage because the time has come for us to move forward into further treatment.  

The dumbstruck feeling lingers because of how incredibly rare having leptomeningeal (technical word for myeloma in the brain and spinal cord) involvement is.  Our transplant doc has been doing this for many years, and has only seen 3 people with this type of condition.  I can't help but feel like this is a witch hunt for Kev's life.  I just don't understand.  I shake my head over and over, because I just don't understand how this can be happening. 

These last 2 weeks have been a whirlwind, but especially this last weekend.  Kev received a full cranial and spinal MRI (took almost 3 hours--that was fun for him).  We received good news that there was no spinal compression and immediate surgery was not necessary.  We got his pain under control and hopefully, just like at initial diagnosis, his pain will subside with treatment.  Unfortunately, the spinal chemo is giving him neuropathy this time around--an unfortunate and painful side effect that he managed to dodge during RVD chemo. 

Seriously, the most challenging thing about this weekend was getting all of the doctors on the same page.  We had to be very on top of each new development in order to give relevant information to different doctors.  We have the transplant doc, the oncologist, the radiation oncologist, and the neurologist, all with opinions about timing and sequence.  I wish we could just all sit down at a table and hammer this out.  Instead it's phone calls from doc to doc--how frustrating.

Here is the current treatment plan, although this is subject to change :-)
1.  Continue with treatment (methodextrate) directly to cerebrospinal fluid via a small reservoir that will be placed. 
2.  Radiation (amount TBD--transplant doc and oncologist have to hash this one out). 
3.  Donor stem cell transplant.  Kev's brothers have both been tested to see if they're a match--we will find out in about 2 weeks whether or not we can use one of them.  Please pray for this!

We are giving this all we have and taking an aggressive treatment approach--pretty much the only way to go at this point.  Donor transplants for myeloma have come a long way in the last 5 years, and some docs are even calling this a "curative" approach.  A word that is beautiful. 

Carry me now, Lord--pull me from the dark pit and put me on your solid ground.  Let me rest my knees next to your feet and feel your outpouring compassion.  Fear is threatening to strangle me, remind me of your promises.  There are moments I doubt your presence and existence, help my unbelief.  Make your presence known during the darkest moments--make it known to Kev. 

Thank you all for your love and support, I'm not sure I could ever express how much it means to our family.

Kristin

Pic taken on 6/2/13