Thursday, November 14, 2013

A 365 day milestone

Dan's new birthday has come and gone and we are charting new territory after day 365.  Making it to a year seemed unachievable at one time.  It was mathematically, statistically unlikely that Dan would see one year post transplant disease free.  Again, Dan beat the odds, made a mockery of statistics, and saw 365 days without a cell of leukemia around. Our family and friends showered Dan with almost 150 birthday cards and gifts galore.  It was an overwhelming day full of emotions, tears, memories and love.  We are grateful, as always for the outpouring from our team - THANK YOU!

140 card pick-up

Seattle memories in a basket
Sadly, the birthday celebrations were hampered by a debilitating spinal headache that put Dan out of commision for almost two weeks, causing him to cancel rehab, forcing him to lie flat for headache relief, and preventing him from making the progress we so desperately want.  I must admit we are off our game on the positivity field and have felt pretty defeated as we've been defensless against this headache. 

Dan has had countless spinal taps, a procedure involving the spinal cord along with some preventative chemo to keep leukemia from developing in the spinal fluid (a sanctuary site for disease).  It's always painful, always puts you out a day or two with some soreness and maybe a little nausea.  There's always the risk for a spinal headache, but luckily we've only known it as a "risk" - until now.  Basically, it's an imbalance of spinal fluid that keeps the brain from being adequately suspended in fluid in the skull.  This imbalance causes the brain to rest against the skull at times, hence an excruciating headache.  The only relief comes from lying flat.  So lie flat Dan did - for 10 days straight.  I tried to be creative in how to feed him, get fluids in him and keep his muscles from deteriorating further.  He ate pureed foods, drank through a straw (while laying down) and did some exercises in bed, but mostly felt comfortable only when he was asleep.  So sleep he did - for nearly 10 days straight.  It was awfully quiet in our apartment.  Dan slept and I scoured the Internet for recipes, tips and tricks hoping to give him relief.  Time has finally passed and we have turned a corner in the last few days. 

On Monday, Dan started acupuncture and his headache has been manageable ever since.  We are optimistic that this new treatment will help many of Dan's ailments and get him back on the offense with an edge on his symptoms. He'll continue these treatments a few times a week to manage his nausea, aches/pains, nerve damage and headache.  He's back on the rehab calendar and had two sessions this week.  He's having a CT to check the status of his lungs post pneumonia and an eye doctor appointment to evaluate some vision changes he's been having the last few weeks.  We've continued to rely on the help of our parents and friends to help get Dan to his many appointments during the day while I'm at work.  They have been a blessing in so many ways - cooking, cleaning, care giving, transporting, errand-running, and rescuing.  We are loved.

The last time I wrote we were ready to get back to normal.  We're even more ready after another three weeks of obstacles.  Slow and steady wins the race, they say.  Dan is working hard every minute to stay awake, eat, settle his stomach, and strengthen his lungs/muscles and I'm working hard to juggle the many obligations of work and care giving.  We still haven't had much (any) time to dedicate to friends or social outings, so we continue to look forward to our trip to PA for Thanksgiving full of family, fun and much needed laughter.  The past few days have been better so we are growing more optimistic about that corner. We're finding joy in peaceful moments, the blessing of our parents, the support of our friends.  We're sharing the joy in our friends' lives, in engagements, in new births.  We're experiencing joy in cancer free and we're never taking that for granted. 

ALL is well in cancer free. 
a kiss and a cupcake for my birthday


  1. Happy Birthday(s)! So happy you are cancer free! Hang in there Dan! <3 from VT, the Pattersons

  2. Hi, guys! You two are awesome. If you're up for trying something for Dan's spinal headaches, have him drink a can of Coke. I leaked spinal fluid after an injection into my spinal column years ago, and I also had to lay completely flat or I'd experience nausea and pain and have to go flat again right away to recover. It took several days to figure out (with the help of my mother the nurse) that the way to cure it was to drink Coke. Who knew!? I'm not sure whether it will help in your situation, but maybe it's worth a try? I hope things continue to improve for you guys! - Vanessa