Saturday, September 21, 2013

Day 221: Update

Ian has been fairly low energy this past week. His liver function test results yesterday were pretty much the same, some slightly up and some slightly down. They decided to triple his green tea supplements and focus on getting him off immunosuppressants as soon as possible. They expect there to still be some leukemia cells hiding out, and the chances are much more likely the longer his immune system is suppressed.  The whole point of the bone marrow transplant is to have GVL (graft vs. leukemia) and usually GVHD (grafts vs. host disease) comes with the territory. The transplant will be unsuccessful if any leukemic cells survive,  so they cut his immunosuppressant in half yesterday and are hoping for him to be completely off within a few weeks.  This is an aggressive move and opens him up to more liver issues as well as GVHD, but the benefit of a possible cure outweighs the risks. Please pray this goes miraculously smooth and all leukemic cells are detected and destroyed!


On the home front,  two days ago I was hit with a miserable cold/mystery allergy attack. We avoid anyone whose had symptoms or has been exposed to anyone with symptoms of illness for the past two weeks, and yet now here I was sneezing and nose dripping all over our home and kids! I washed my hands a billion times, I swear. Friday morning, some dear friends swooped down with angel wings to pick up the girls for a sleepover so I could get some rest and to avoid our children becoming deceptively cute germ vectors for Ian.  I'm feeling much better today after a blessed 24 hours of rest and so far I'm the only one whose been hit. Please pray it does not spread to anyone else in our family...


Thank you!

Sunday, September 15, 2013

Day 215: SOS

I have some good news and some bad news:

The good news is that Ian's recent chimerism still shows 100% donor - Hooray!!!

The bad news is that Ian's liver is not doing so well. I can even see it in his eyes - they are turning yellow. His doctors are now thinking it is a mild form of SOS returning, based on their readings of his blood work. There have been instances where green tea extract has helped patients who refused to do the clinical trial, so we started today on a high dose of green tea pills. I am also determined to get as many organic farmer's market vegetables into his body as possible this week by juicing and cooking up a storm. We really don't want him in the hospital another three weeks!

Please pray that we see improvement this next week when they check his liver function again.

Thank you!


Wednesday, September 4, 2013

Day 204: Happy Birthday Ian!

Today is Ian's birthday! 

I wish I could throw him a huge party to celebrate, but with quarantine that is utterly impossible. So I've decided to wait and throw a really big one next year.

Ian was born on Labor Day, so somehow even if it doesn't fall on his birthday it feels like a special holiday. We celebrated by going for a family hike at Rancho San Antonio. 


Ian set up a hammock next to a small creek and watched the girls creek walk. 





It was a very special day for Asha - she lost her very first tooth! Her bug container wrist band came in handy as a tooth holder for our hike back, and a perfect display case to proudly it show off.   




Ian and Asha ran races the whole way back to the car. So good to see Ian active and outdoors again!


Update on Ian's health: 
Clinic days have been pretty uneventful. His liver counts are still up, but not alarmingly high. They are still keeping his immunosuppressants high, presumably to protect his liver from GVHD and give his body more time to adjust to his new immune system.  I am hoping to be able to go with him to clinic this Friday to meet with his doctor and ask more questions and get the latest chimerism results. We should have a better idea of where he is at and possible next steps after this appointment.

These days, every day feels like Ian's birthday.  I know it sounds sappy, but it is honestly the truth. Each day is a new day to celebrate life together and be thankful for each precious moment we have with him.  Every day I remember what it was like with him gone for months at the hospital, his life hanging by a thread, and this gives real perspective to my daily home life. One of the deepest blessings of this ordeal has been the consistent reminder of how ephemeral our lives really are and not to take each other - or our own lives - for granted.  Every day, every breath, is a gift from God to be thankful for.  Not that I remember this all the time, oh how I wish I did!  I am so tempted to worry about tomorrow or stress out over silly and insubstantial things in the heat of the moment. But having the reality of cancer in our lives gifts us with built-in reminders that call us to slow down and savor all the little things that make life sweet.  

Happy Birthday Ian, My Beloved...

May we have many, many more years and may we savor each day of them together.
We love you Mr. Brown!!!