It's Like the Whole World is Crying With Us

The past few days have been filled with intense grief. Ian's latest biopsy showed what we have both been quietly suspecting - the leukemia continues to rage. Ian never got his energy back after the last treatment and he has been having increased night sweats and other leukemic symptoms. Once the disease becomes resistant to one form of chemo, there is less chance for any other kind of chemo to work.

We were given the choice yesterday whether or not to continue treatment. We've decided to go one more round. Ian checked back into UCSF and began a new regimen of chemo last night. If this puts him into remission, then a transplant is still possible. Otherwise, apart from a miracle, he will be left to survive on blood transfusions until he is no longer able to survive.

Ian wept and prayed over each of our girls yesterday morning as he said goodbye, knowing he will be in the hospital another month and may not have much longer to live. As we stepped outside into the gray, rainy morning with heavy hearts and tears still wet on our cheeks, Asha said sadly, "It's like the whole world is crying with us." Fiona asked if it rains when God cries.  It felt like the whole world was dripping with tears, mourning for us and all that we were going through. Somehow it was comforting. 

Please pray for us. We are still choosing to take it moment by moment, knowing this bad news does not change the fact that we are in God's good hands. We feel deep peace in this storm. We feel parts of our hearts healing in the midst of our breaking. We feel divine grace carrying us, as we have throughout this journey. We know without a doubt that if this fire continues to grow hotter, then we will be given bountiful grace to walk through it.  One day, one moment, one prayer of surrender, one tear, one deep breath at a time.

Video update

Some people were not able to see the video in the blogger format, so here is a youtube link to it right HERE. Just because it really is that medicinally cute  : )

Home Again!

Ian was released from the hospital late Friday night, and we are SO thankful to be all together again!  He is not neutropenic right now, so I can relax a bit on sanitation awareness and we can eat outside food.  Yesterday morning we even took a family trip to farmer's market and had lunch at the local Falafel Stop : )

Fiona keeps commenting on how exciting it is to have Abba home, but she worries when he leaves for a walk or an appointment that he will be gone for a long, long time again.  We talk daily about the transplant coming up so both girls are pretty aware of what's around the corner.  My heart aches knowing this is just temporary, but we are thankful to have at least a couple weeks together before heading into another round.

We are still waiting for news on timing of the transplant.  There are so many unknowns right now, but thankfully we have at least two good matches under investigation. Things could all move very quickly and head into transplant in a couple weeks, or the best donor match may not be available for a few months and Ian may need to go through some more rounds of chemo to stay in remission until transplant time.

One thing we do know is that we are required to find another caregiver for the first 3 months after transplant who is not also responsible for children. It is a seriously vital and vulnerable time of recovery and requires juggling a super complicated schedule of medications and appointments. We were planning to just hunker down as a family for those 3 months, but they equate caregiving on top of parenting to having more than 6 full time jobs. Needless to say, we are changing the plan and actively seeking a caregiver (or series of caregivers - for example, one month each) to live with Ian for those first three months. Last time we had a separate condo that gracious friends gave us to use, but this time we feel it best for Ian to stay in the comfort of our home and for the girls and I to find a separate space. Please pray for us as we seek to fill in all these missing pieces.

As for the lesion in Ian's femur, they are pretty sure it is the remains of a chloroma (leukemic tumor). He is supposed to get a full body PET scan this coming week to check for metabolic activity, and they will decide on whether or not to biopsy it from there. No matter what the PET scan shows, they will give him a blast of radiation just to make sure there is no active leukemia hiding out.

I have been struggling with stress induced headaches this past week, making life with wonderfully loud and bright and energetic children more of a challenge. I'm glad to now have another parent around to absorb some engagement, but I also want to make sure Ian is able to rest and get some soul space while he is home. He is still pretty low energy and quickly exhausted.

I have to end with this video of Fiona from a few days ago, because it is just pure bliss. It makes my heart smile every time as I've watched it over and over and over. You can really see why cats are great therapy : )

New Update

Though there was talk of Ian coming home yesterday, the doctors have decided to keep Ian inpatient until he is out of neutropenia land.  His counts are currently bottomed out, so he's surviving on blood transfusions in the meantime. His mouth, tongue and GI tract are all torn up from the chemo, but he is still able to eat and hold down food.

We don't know what happened to cause that horrible fever, but we suspect it was a blood infection from sloppy handling of his port in the CT scan room of the emergency department. Thank you so much for the flood of prayer that poured in for Ian during that scary ordeal. Ian's room was swarming with concerned doctors and nurses and they were talking seriously about moving him to ICU when I posted on the blog and Facebook about our need for emergency prayer. It was an amazing shift that took place from that point on - the room seemed to calm down and Ian started coming back to himself. Soon after that the doctor told me, "By looking at his face, I can tell he's going to be ok. His vitals aren't showing it yet, but they will follow. Don't worry, he's going to be ok." Soon all his vitals were stable, and he has been stable ever since. 

One new thing they discovered on that fateful scan in the emergency department was lesion on his right femur.

They did a MRI scan of it last night and we are still waiting for more information. We are sure there are more bone biopsies to come - on this femur. Ian has had a strange headache that started several hours after the MRI scan that seems to be related to the gadolinium contrast they used which is suspected to permanently accumulate in the brain. Please pray this lifts soon and this lesion is nothing serious. We really don't want a new cancer to deal with on top of this. 

I'm trying to get back in a rhythm of some sort this week for homeschool, realizing that change will be our only constant for many months ahead.  I'm also trying to be present, trying to take care of myself, trying to take lots of deep breaths and remember grace and the power of Divine strength in my very human weakness. 

Thank you all for your love, thoughts, and prayers ❤️