Update

Here's where Ian is at right now. It's not encouraging:

The intestinal infection was diagnosed as typhlitis, colitis caused by prolonged neutropenia.  It seems to be clearing up with the break from food and strong antibiotics, as the tenderness in his abdomen is decreasing. His fevers are continuing to ramp up, however. He burns up near 103, hiding in a cave under the covers just waiting for the next dose of Tylenol to bring it down to a lower fever. They are trying to get to the bottom of these severe fevers since they don't seem to be connected to the typhlitis. 

They did a CT scan of his lungs and found several small but rapidly growing nodules. They suspect it might be a fungal infection and are now giving him the biggest gun antifungal available. It's hard on the kidneys so they have to flush him with a bag of saline before and after. We will see if this helps the fevers at all. 

Ian's WBC (white blood count) has been inching higher, and we were hoping it might be sprouting hope. Sadly, we discovered it is due to the leukemic blasts that have progressed from the bone marrow into his peripheral blood. He's never had this before, so that was another heavy blow this week. 

Ian started "eating" clear liquids a couple days ago and we're hoping he can graduate to soft foods soon. All he's had this past week is a few bags of glorified Gatorade "nutrition" and lipids by IV and a couple bowls of unappetizing clear broth. 

We are still looking into the clinical trial in Texas, and UCSF is still working on trying to get the drug he needs here. Without an immune system, at the state his body is in at right now, it's unlikely any of these treatments will work. Even if they had access to the most ideal drugs to try, they can't start anything while he has these fevers. 

There are just so many things stacked against him right now...

Please continue to pray. 

Heavy Storm Clouds

My head is pounding as I recover from spending all night nodding off in a rock hard chair in the ER, but I know I really need to send an update so here it goes. 

Oh it's been rough. Rough, rough, rough. The "I want to hide in bed under the covers and sleep, hoping that this is all just a bad dream" kind of rough. There are heavy storm clouds threatening overhead. 

The treatment Ian started was denied by insurance. It's too costly for the hospital to cover, so it's now off the table unless the drug company agrees to donate it. We're hoping the hospital will cover the first dose and not send us a bill for a quarter million dollars. Checking the mail these days is scary business. 

Ian came home New Year's Eve and was there with us for about a week. It was bittersweet. We were so glad to have him home, but it was painful knowing he was released full of leukemia with no immune system and no further treatment in sight, surviving on transfusions every other day. His soul is still thriving, but his strength is waning. There is a growing shadow of grief looming and I can't seem to push it away. 

Ian started having a fever last night and has been having abdominal pain for a while now. They are thinking it might be colitis, intestinal inflammation.  He's back in the hospital and isn't allowed to eat or drink anything until further notice. He's gotten too skinny already from my perspective, so this is worrisome. If it clears up in a few days, then it was just colitis caused by prolonged neutropenia. If it doesn't clear up, they will look into a more severe form of colitis caused by the treatment which would require steroids. 

I'm trying to fight against worry, to refuse to be held hostage by the terrorists of anxiety, fear and hopelessness. I'm trying to trust, trying to hope, trying to be present. But to be honest, I'm feeling very weak, very overwhelmed, very sad and alone. I'm just a Dixie cup. I don't have the strength to carry this heavy burden, to weather this miserable storm. I know my anchor holds beyond these flames, that beauty can come from ashes, that fresh new life will eventually spring up after the storms have passed, but right now it all just feels too sad and grey. 

Please pray for us. 

An Experiment Begins

Well, Ian's counts aren't coming up. The biopsy results showed very few cells in his marrow, and what they did find was 60% disease. If this had happened just a month ago, it would have really been the end of the road. 

All the doctors just happened to come back from a big hematology conference a few weeks ago, however, where they heard about a possible new treatment for Ian. They gave Ian his first dose of the experimental treatment this morning. There are a list of serious and possibly deadly side effects, including full-blown GVHD, but at this point it is our best option.  

We are thankful they were willing to try this experiment here. They've taken lots of labs and will be learning from Ian's case as this goes. A very dear friend of ours has been praying they would find a new treatment for Ian and it would open up a cure for others. Let's pray her prayers are answered.

I'll leave you with some pics of our sweet Christmas visit with Ian yesterday:

Beauty from Chaos

Wow. This Christmas morning raga and this poem by Sally Lloyd-Jones were exactly what I needed this Christmas morning, like super special gifts straight from heaven to awaken my soul before the girls wake up. The more excited they were about Christmas yesterday, the more sadness and anxiety and chaos raged in my heart. It just didn't feel like Christmas with Ian in the hospital. Nothing felt right, joy was eluding me. I wanted to cry into a pillow, not smile and sparkle with my shiny, happy little girls... But this. This poem hit me to the core. If God can create the intricate beauty of this universe out of nothing and chaos, He can make something beautiful out of this sad, messy, overwhelming season of grief and isolation and change. I'm feeling hope and joy rising once again. 

Chaos: an advent poem

In the beginning,
before there was anything,
God’s building block—from which he would make the entire universe—was…

Nothing.

Out of the Void
The Abyss
The Emptiness
The Nothing
God makes
EVERYTHING.

His other building block?

Chaos.

The Bible says God hovered over the chaos—over the disorder, the darkness, the confusion—and out of that makes the universe.

Out of chaos, he makes…

…the butterfly

…tomatoes growing on vines

…sun, moon and a thousand stars—all turning, wheeling, orbiting together in a delicate dance.

This is not the clash of violent forces
making the world by chance.
This is an artist
creating his masterpiece.

Not because he has to.
But because he wants to.

For the sheer joy of it.

Doing what he loves to do.
Working with his favorite materials—
nothing
and
chaos.

Filling the emptiness.
Lighting the dark.
Turning chaos to Joy.

But sin lives in our hearts, unleashing chaos once more, working backwards—unraveling God’s beautiful creation, breaking his perfect world, un-creating everything: turning life to death, joy to sadness, hope to despair, light to darkness, order to chaos.

But God would once again turn chaos to Joy.

This time not hovering over the chaos.
But entering into it.
Taking the chaos into his own heart.
Mending his broken world
And in mending it
Die.

For, one night, long ago in Bethlehem,
Into the chaos of homelessness and poverty
Into the chaos of breaking hearts
Into the chaos of darkness and hate and tears and sickness and dying…

A Light.

A Word.

A Child.

-SLJ, Advent 2015

{Original poem © 2015 Sally Lloyd-Jones | written for Blood:Water, an organization founded by band Jars of Clay and activist Jena Lee Nardella to serve local leaders and join them in the fight to end the HIV/AIDS and water crises.}

Dixie Cup Christmas

Well, it is looking like we will be celebrating Christmas at UCSF this year.  Ian's neutrophils are at zero today. They haven't even teased us with a bump lately, much less the spike that we need for him to be released. He is usually already home long before this point, 29 days from the beginning of treatment, so it honestly isn't looking like they're going to come back up. They did a biopsy yesterday and it is clearly pointing toward disease progression.  We are now actively pursuing options of a clinical trial at MD Anderson in Texas or an experimental drug here at UCSF. We are requesting the treatment from Texas be given to Ian here at UCSF, which is a pretty tall order on many accounts (insurance and otherwise), but it can't hurt to ask. Please pray for us and the doctors as we explore these options and continue to pray for healing. 

I'm happy to say my cold sore has healed enough to where I felt safe bringing Fiona to visit Ian a couple nights ago. She ate chocolate ice cream and drank apple juice and danced to Ian's beat boxing and held his hand while he got his painful nightly neupogen shot.

We sure wish Ian could be home for Christmas, but if he can't then we will just have to bring Christmas to him.  I'm planning to secretly bring most of the presents to Ian's room before Christmas morning so the girls will be super surprised when we show up on Christmas Day and there is an unexpected pile of gifts waiting : ) 

Today I had my annual thyroid ultrasound just across the street from the hospital where Ian is staying. It has been almost 8 years since I was diagnosed with a rare and aggressive form of thyroid cancer, and I'm so thankful to still be here to tell the tale. Laying still while the ultrasound technician explores my neck and takes measurements again and again and calls the expert in to check out questionable areas - it's a sort of near death experience every time. I am forced to face my own mortality and the need to place my family and my future even more snug in God's hands rather than grip them fiercely and reactively in my own. 

A dear friend recently reminded me of a long lost image I used to love to compare my life to: a Dixie cup. In different seasons, it has carried different levels of meaning. I appreciate the visual perspective that we are all just frail little cups meant to somehow hold the much greater glory of God. 

These days, the analogy of a Dixie cup feels more applicable than it ever did before. Dixie cups can't hold liquid for long. They sag and crack and dissolve in a mercilessly short amount of time. They rarely even survive the short snack time of a toddler class before falling apart. Though we tend to try to avoid at all costs facing this reality for ourselves and those we love, humans are a lot like Dixie cups. We will all face death one day. Every single one of us.

As we are facing the magnificence and very real frailty of human life, we can all the more appreciate the true wonder of Christmas. We are celebrating the fact that to show us true love our Maker became a leaky, disposable Dixie cup just like us.  He understands our weakness and grief and suffering and is walking with us through each and every day of it.  Apart from his hand holding us, we would surely fall apart. 

Tightrope Walking

I've been getting a lot of pings asking for an update on Ian, so I figured it's way past due time for a post. I'm thankful to say this has been a relatively mild round of chemo so far for Ian. He's had a fever up and down the past week or so, but no major nausea or mouth sores. He has been at a neutropenic low for weeks now, and we are just waiting for his blood counts to start rising and reach the point where he has enough of a basic immune system to leave the hospital. The doctors always give the caveat "if his counts come back up" because nothing is guaranteed, but we are hoping and praying Ian will be home before Christmas. That is now less than a week away, so please pray superpower neutrophil proliferation over the next few days! 

We are not sure what is next. The doctors will make that call once we have more data on whether or not he is in remission from this round. We are forced to walk day by day with very little knowledge of what's coming around the corner. Possibly a transplant, possibly an experimental drug. 

It's felt like an intense tightrope walk this past month, having to live in two worlds at once as we prepare for an unknown future. Sometimes I lean into the grief and try prepare myself and our girls for the very real and probable likelihood of losing Ian. Sometimes it's hard to even imagine there's hope of healing and life altogether in the future. I hear Fiona share from her heart daily, "I'm scared Abba is going to die" and again and again "I'm sad. I miss Abba." Sometimes I melt into the sadness with her, missing him and afraid of losing him. 

Other times, usually after spending time with Ian, I'm so full of hope I can hardly remember he's even sick. Realistically, about three years ago he was in the same position with only a 5% chance of surviving another year. Statistics can be daunting, but when I see the glow on Ian's face and his strength of soul - those numbers seem quite feeble and useless. God is so much bigger and if there is more for Ian to do here, not even relapsed, high risk, chemo resistant AML leukemia can stand in the way. 

And so we walk the line - hoping for the best, preparing for the worst - one foot in front of the other, seeking to be present in the here and now where my daughters need extra cuddles and heaven can actually touch earth and life is really happening. Leaning too far on one side or the other feels unbalanced. Our hope is in God, not in the strings he can pull for us. Fixing our eyes and hope on Him, regardless of the future outcome, this feels grounding and truly hope-full. We are being schooled in the art of daily trust, and we are finding life that is truly Life here. 

I developed a cold sore a few days ago, which prohibits me from visiting Ian or bringing the girls to visit him until it clears up. I'm taking multiple treatments, both natural and pharmaceutical, to hammer this virus as quickly as possible. Please pray we can be back by Ian's side soon. And please pray for extra grace to walk this tightrope together with strong faith and soft hearts, eyes fixed on Jesus and present with each other, step by step by step. 

Fire

Dear God,

Please do not forget that you have me on the stove.

Warmly,

Ian

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 : )