Miracle, please.

It's past midnight and I'm sitting at Naan n' Curry down the street from UCSF trying to piece together an update. I'm eating a veg thali and watching the flicker of a Bollywood film out the corner of my eye and imagining myself back in India.  Earlier this week I was dreaming of taking the girls to a rainbow gathering in the Republic of Georgia. Fiona asks me daily when we can go back to Thailand. These days I find myself highly tempted toward escapism, wanting to be anywhere but here. 

It's cold and sprinkling outside and it took me what felt like ten hours to find my car, wandering up and down the street shivering with no jacket. My heart feels cold like the night, disconnected from the pain of it all. It's hard to write an update when I'm feeling like a bystander myself, watching the colors continually change from superhuman strength to pain and powerlessness, from keen engineer of survival to a madman speaking dillusional chatter, from hopeful warrior to a helpless shivering man I can hardly recognize, all this and back again, over and over and over. 

The staph infection is gone, but it has now been replaced by a lactobacillus infection. They've switched antibiotics to treat it. Though blood infections sound scary, they can be knocked out pretty effectively if treated early and appropriately. 

Ian has ejected from all basil opiates, meaning he no longer has a continuous flow of narcotics through IV. He can still push a button if he needs it, but he says it doesn't help much anyway. I really wish the occasional dillusional talk went way with the opiates, though. I think it could just be lack of sleep over the past few months catching up with him. 

Now that his pain is under control, we have a beautiful new goal: getting Ian home and out of the hospital. It hurts to think about because I don't know if it will ever be possible with Ian's desire for continued transfusions, but it's helpful to have a clear goal to work towards.  

Our main steps toward that goal are getting him back to eating food (this is the tricky part which includes his gut healing enough to handle food and no longer needing the NG tube siphoning fluid from his stomach) and getting him strong enough to walk the 3 flights of stairs between the parking lot and entrance to our home. Each day he thinks the intestinal infection is a little better, so we are hoping at some point he can pursue food again. This is quite elusive though, and the doctors aren't sure he will ever be able to eat again. We've learned that Ian tends to far surpass any doctor's expectations, however, so the goal still stands regardless of the many skeptical unknowns in how to achieve it. 

Ian is now up to walking 3 laps around the floor daily, and he's determined to slowly increase it. The other day, a nurse even took him for a walk outside to get his first breath of fresh air in nearly two months. 

This picture feels deceiving, though. In a sense it feels like he's come back to life after being on his deathbed. There were many nights I watched his every breath not knowing if it would be his last.  Things have changed so much since then, but in other more significant ways nothing has changed. Keeping it all in perspective, he's still dying of leukemia with his bone marrow and blood packed with only blasts. He's still surviving on daily transfusions and IV nutrition. His fevers have also ramped up with a vengeance this past week, so he spends half his day hiding under the blankets or cooling off with cold packs as he rides the fever wave with every 6 hour dose of Tylenol. It's rough. 

Oh it's so rough. I'm feeling exhausted from driving back and forth to UCSF and watching him suffer so long.  The girls are also having more meltdowns than usual, requiring more than usual patience and wisdom from their tired Mama. 

We need prayers. So many prayers. We need the wings of heaven to scoop us under and warm us with Divine comfort. I need my heart to melt again, I need to be able to cry again and again and not grow cold on this painfully long journey. And we really need healing. Healing for Ian's intestines so he can eat again and come home, healing for the leukemia so he can make his own blood and have an immune system again. There's really no hope at all for Ian's body besides a big fat miracle.