Today marked Kev's last day of radiation.  Fifteen treatments to his neuroaxis (brain and spinal column).  The side effects of the radiation are starting to get more intense and uncomfortable.  He has a sore throat, altered taste buds, weird sensations in his ears, laryngitis, and significant fatigue (to name a few).  The weakness in his arms is improving and his double vision has improved to the point where he can drive again, which is great.  We were unprepared for the amount of physical debilitation that came since this cancer reemerged but we rode out the hard part and are seemingly on an upswing.   Brain radiation is pretty scary to think about, so it helps to see the improvement in his physical functioning. We are so grateful to have this behind us and are begrudgingly moving forward to the next phase. 

Our oncologist consulted with the specialist in Chicago and it was his opinion that we do not move forward with a second auto transplant.  He proposed that we continue with the spinal fluid chemo (through the port that was put in a few weeks ago) and begin to treat Kevin with some aggressive systemic chemotherapy.  Following the chemo, he will hopefully be in remission (remember--myeloma is easy to kill, but hard to keep there) and we can then move forward with the allo (donor) transplant.  Although this is one doctor's opinion, we still desire to seek out ALL the options and make the best decision we can based on all available information.  Like I have mentioned before--this is uncharted territory and the whole team feels the gravity of the decision.  I have been pouring over Internet forums and Facebook support groups to try and find someone who has been in our situation.  I have met one lady on Facebook whose husband had a failed auto and a subsequent allo transplant, but he suffered severe complications and is now on permanent kidney dialysis following a 6 month hospital stay.  BUT he is in remission!  My brain starts to get bogged down with all of the possible complications of the upcoming treatment regimen, sending me into a panic mode that I absolutely HAVE to get all of the information.  

This last month has been a tidal wave of emotions and changes.  We entered a mode where the most demanding problem needed to be solved first, and the others had to float in the background waiting for attention.  One of those was the matter of my employment.  It was becoming more and more difficult for me to be at work--not just physically, but emotionally as well.  I began to feel quite strongly that the Lord was guiding me to be at home with my family.  I absolutely love my job, so when I made the decision to move to "on call" it was very difficult.  Plus, we had to consider what this would do to us financially.  Someday, Kev may have to go on long-term disability and not receive his full pay.  Can we do that?  So many variables and questions.  Again, I am called to trust the Lord.  By following His will, He has promised that He will provide for us in ALL things.  It may seem scary to live this way, but there is a feeling of tremendous freedom knowing that God will take care of us, however that may look.  God, in all of His love, has already reinforced this by blessing us with several financial gifts from people, just within the last 3 weeks.  It is humbling to receive such gifts, and I can do nothing but fall on my knees before the Lord in thanks. 

Sometimes I can feel my brain running and running and running and it takes a few days to realize that I am exhausting myself unnecessarily.  I have to remind myself that I don't need to solve all the problems today, and in fact I can't solve them.  Thank God I can find rest in Jesus, an ever present help in times of trouble (Psalm 46:1).  Ever present!  Always there in my most desperate moments. 

Right now, the treatment plan looks like what I have outlined above, but nothing is set in stone and we're still seeking information.  If we start another chemo regimen, this puts the allo transplant into fall.  Please pray that Kev will be able to return to work soon and that he will have the capacity to work through the chemo treatments.  Our doctor is very supportive of Kevin returning to work, and feels it's important to his overall recovery. 

The doc has ordered a full re-stage: bone marrow biopsy, PET scan, neuroaxis MRI, and renal function test.  I will post another update as soon as we get these results or sooner if I have more information to share. 

We have received an amazing outpouring of love and support, and I continue to be amazed at how kind and selfless our support network is.  THANK YOU from the bottom of my heart.