The Road Ahead

Things have been calm and even quite joyful around here lately. Divine Grace is clearly carrying us. We are still living by the principle of "do not worry about tomorrow" and I never want to turn back.  Though there are moments when the statistics start to scream in my ears and silence the hope of a miracle, in general we are keeping on the path of peace and surrender - taking it day by day, moment by moment.

Here is a quick summary of what the road looks like ahead, from where we stand now.  Next week Ian begins round two of chemo, and the following tuesday he receives the first DLI (Donor Lymphocyte Infusion).  We will then repeat this process of two more sessions of chemo 4 weeks apart and then a second DLI.  The purpose of all this is for the chemo to "tag" Ian's old diseased immune system (pre-transplant) and for his new immune system (supercharged with T cells from his brother's lymphocytes) to locate and attack it.  We are hoping for GVL - Graft Vs. Leukemia. We must also be prepared for some GVHD - Graft Vs. Host Disease, where his brother's immune system turns against Ian's own body and attacks it. We are hoping for not too much of this. There is a 25% chance of this treatment being successful. There is also a 20% chance it will cause his death within a year. Not a fun game of dice.

The chemo is pretty mild as far as side effects go. He hasn't lost any hair and his appetite is normal though food tastes a little off. Brain fog, low energy and mild nausea are the only symptoms he has experienced so far.  It may be a couple months before we know if the treatment is working, however.  This means an extended season of weekly platelet transfusions and careful quarantine due to neutropenia - very, very low immune system and high vulnerability to infections. It is a long and precarious stretch of road ahead, but we've hiked these trails before and I know without a doubt we will be given grace for each day and for each step of the way. We are learning ever deeper the art of trust and living in the moment, and these are beautiful lessons though at great cost.

Please pray this treatment will be successful. I am asking that God would supercharge every cell that is working toward Ian's life, and that any cell that isn't would be destroyed. Please pray protection over his vital organs especially during the DLI and that he wouldn't get any more fevers or infections.  If this treatment doesn't work, our remaining option is a second bone marrow transplant. We are really, really, really hoping that isn't necessary.

So that's the plan.

Thank you all for your love and prayers!

P.S. Ian is trying to walk daily and is highly motivated relationally. If you want to really help out and connect with him, taking walks is a great way to do so. Restrictions for quarantine are that you need to have been healthy for the past two weeks without known exposure to anyone who is sick the past two weeks. 

Home!

Ian is home!

The girls and I picked him up early this afternoon and celebrated by playing in the rain and splashing in puddles...

So thankful to be all together as a family again!!!!

Perhaps they don't feel beautiful

 "Perhaps they don’t feel beautiful, ...  But I don’t know that I’ve ever heard anything as radiant as those two"

> Do you know how beautiful you are?

Hospital Update

Ian is in the hospital with a mystery fever/infection. His fever rose yesterday morning and we were in the ER until 10pm last night when a bed opened up at the main hospital. We are waiting for lab results and blood cultures to reveal what's going on. Possibly just Fiona's virus, maybe an additional sinus infection, maybe something else entirely. Without an immune system to fight bacteria and fungus, they take a fever very seriously around here. 

Whatever the case, Ian isn't doing so good. He hasn't rested well and has lost all his spark and spunk. His eyes are glassy and distant. He's not even reading texts sent to him. It breaks my heart. 

The hospital bed is torture for his body, inflating/deflating the moment he settles into a comfortable position. He's being pumped with "big gun" antibiotics which may or may not be effecting him. One thing is for sure - something about this place seems to numb the soul. It's hard to have hope, to remember life outside the hospital, when you are chained to IV drips and dependent on shifting nurses for basic necessities. I'm trying to hold onto hope for him, but this place has its effect on me also. 

We should have news today or tomorrow from the labs. 

Please pray it's nothing serious and he can come home soon!

So far, so good

All is going smoothly around here. 

Fiona is still in recovery with my mom, but I'm quite hopeful at this point that her bug hasn't spread. So thankful!

Ian is feeling more cumulative effects of the treatment, but nothing too extreme. The lowest dip should be tomorrow. So far just mild nausea, dizziness and chemo brain. His liver is tolerating it well. 

At this point we have to be super careful about bacteria and fungus. This means fresh, clean, well cooked food is a big deal. No eating out, no leftovers.  A friend created a meal planner registry if anyone wants to pitch in cooking for us. Here's the link: 

http://www.takethemameal.com/meals.php?t=IEKC2418&v=58e537189c#

We're so thankful for all the amazing support we've received. I firmly believe we are going to get through this fire unscathed, by God's grace, once again. Ian's nurse practioner even had a dream this week that he was healed, his platelets back to normal counts! 

Amen, let it be... 

Sick Little Fiona

Ian completed his first round of chemo yesterday and is doing pretty well. Not too much nausea, he's eating well and walking daily to keep up his strength. 

We were riding a red carpet of smooth sailing until yesterday. 

Fiona awoke with a horrible cough and wheezing/difficulty breathing, and she's definitely full power sick at this point with a fever and sore throat in addition to the cough. It's been a complicated dance to figure out how to care for a clingy toddler coughing in my face as well as a neutropenic husband with barely any immune system fighting leukemia. Lord help us! I'm clinging to trust in the midst of it. A friend texted this verse to me just moments after Fiona woke up sick yesterday:

 “Fear not, for I have redeemed you; 

I have called you by name, you are mine.   

When you pass through the waters, I will be with you; 

and through the rivers, they shall not overwhelm you; 

when you walk through fire you shall not be burned, 

and the flame shall not consume you.  

For I am the Lord your God, the Holy One of Israel, your Savior." 

Isaiah 43:1-3

That has been a key verse of hope for us. 

My mom took Fiona this morning for the next couple days (HUGE relief!!!) and I spent most of the day today with Asha at the beach getting fresh air and sunshine therapy. 

I was exposed to Fiona's germs in a rainbow of ways and was up most of last night with her, so it will be a miracle if I don't catch her bug. 

Please pray little Fiona heals super quickly and nobody else catches it... 

Especially Ian!

Thanks ❤️

Relapse

The last vestiges of Ian's platelets and neutrophils are being progressively suffocated by rapidly multiplying leukemia blasts. The biopsy showed a clear relapse of leukemia. This is the update I never, ever wanted to write.

The girls flew in late Tuesday night and were too exhausted for a serious talk, so we decided to tell them the next morning. I felt strongly that we should all go to the clinic together for his first chemo, to face it all together as a family unit. We had a fun morning of favorite breakfast foods, reading stories, playing legos and riding bikes. My heart was breaking throughout though, knowing we had to invade the sweetness of reunion and these simple pleasures with a very complicated announcement. We just couldn't do it, so we packed up and headed to the clinic without explaining the bigger story. Finally, while walking from our car to the clinic, we broke the news. Fiona didn't seem to get it, but Asha's face fell with sadness. Later as we were waiting for the doctor to come, we had deeper conversations and Asha cried in Ian's arms. It was good to see her facing it and grieving and feeling the emotions this time. Last time she never really faced it and her emotions came out sideways. 

Day 1 of a 5-day round of chemotherapy began yesterday. Please pray this chemo is gentle on his liver (and nausea) but superpower strong to kick that AML. Four weeks from now, we will begin round two. The plan is to finish two rounds, then get a boost of stem cells from Ian's brother. If this goes well, we will repeat it. Something like that. It was hard to hear and process these things while also monitoring Asha's emotions. At first she blocked her ears, looked down to the floor, and made semi-quiet mouth noises to keep from hearing anything the doctor said. She was afraid he would say Ian was going to die soon. She finally realized he was just helping us make a plan to get him healthy again, and was able to at least stop consciously distracting herself. But it was emotionally intense. Please pray for the girls as they process these things and our  lives become more restricted.  

Ian is back on medications to help protect him while being severely immune compromised, and we are back on quarantine for the foreseeable future. Please pray protection for Ian as he will be in a very vulnerable place for a while. A bright spot was hearing that the thick, sticky, nauseatingly disgusting anti-fungal liquid medication that was the bane of Ian's recovery last time is now available in tablet form. Huge relief! Also, as long as things go smoothly and are actually effective, he will be able to do these rounds of chemo out-patient. That means we get him home with us between treatments! He has already endured being peeled out of bed this morning and dragged into a "relaxation station" put together by Asha and is currently reading princess stories to Fiona while I try to post this update and make phone calls back and forth with the clinic and pharmacy. I'm realizing it will bring immense complications of its own having his recovery at home in the midst of family life. I'm feeling overwhelmed and frustrated and heartbroken this morning. We need a lot of miracles. Please pray for restful, joyful balance in the midst of all this and a smooth road to successful and complete healing.  

Thank you for your prayers for us as we walk this horrible road again. There is a world of emotions embedded in that small block of medical buildings at UCSF that I never wanted to revisit. The urine smell in the parking garage, the elevators I've cried in, the sympathetic faces of caring nurses who really get it, the growing mound of medications, the fears, the grief, the anger, the questions, the unknowns... they are all coming back to me.  All of these sharp and cutting memories can easily intensify the dread and discouragement of his relapse, but we are trying to have good mental hygiene. We are choosing to walk in hope. We remember the fire, but we also remember God's grace carrying us through it. My prayer is that we get through it again, not even smelling like smoke. 

Thank you so much for your prayers, your texts, your phone calls, your facebook messages and offers of support. It means so much. Thank you especially for reminding us of our hope in those moments when it seems to slip away. We are grateful for such a rich community of friends and family to walk this rough road with us. 

Trust

Things are not looking good. 

Chimerism results which were 100% across the board a year ago are now 99% everywhere except the myeloid cells where his cancer was (not good). There it is only 92%, which means 8% of Ian's old leukemia infested system has returned. AML is no joke, it moves swiftly. His platelets and neutrophils are continuing to decrease steadily, indicating the disease is progressing. 

I wanted with all my heart to be present with Ian during the bone marrow biopsy yesterday. He chose the manual procedure (screwing it in by hand) verses the drill gun which is quick but can leave more pain in recovery. My heart sank. It's hard enough to watch them plunge the large needle of numbing fluid in and out, in and out and all around again and again until it doesn't hurt anymore. Then the exacto knife goes down deep into his hip bone. But when they started screwing the bloody ice pick down I couldn't take it anymore. Watching Ian suffer, remembering all the suffering of his past treatment and realizing we are back on that road again...it was all too much to take. My hearing faded and everything got fuzzy and I gently whispered "I think I'm passing out" as they quickly wheeled me away from my husband and onto a bed in another room so I wouldn't distract from the procedure. As I returned to consciousness, the inner fountains broke wide open. I wept and wept, and continued weeping off and on for the remainder of the day until I crashed in exhaustion last night. The nurses there were amazing, so comforting and present and compassionate. One of them stayed by Ian's side to hold his hand since I was MIA and tenderly kissed his forehead as we left. They all adore Ian and ask about the girls and are rooting for us like cheerleaders. Honestly, it was hard to leave that warm nest of maternal nurture. On the other hand, we can't wait for the day when we never have to go back. 

We are still waiting for news from the biopsy, to assess the damage. We should have initial results Tuesday. The girls fly home Tuesday night (we haven't told them about any of this yet). Even with the best case scenario of no leukemia detected, which is highly unlikely, he begins chemo Wednesday to try to restore his graft in the myeloid cells. The intensity of chemotherapy they can use will be tricky due to his previous liver failure from its toxicity. They also want to boost him with more of his brother's stem cells, and possibly another bone marrow transplant from an unrelated donor. The decision tree depends on results of his biopsy and what his liver can take.

So those are the details. Not what we were hoping for, by any means, but it is what it is and we are seeking to burrow into Jesus for comfort and grace for the day. Ian is faithfully reminding me of the words of Jesus- that if we want life that is truly Life we are not to worry about tomorrow. He gives grace for each day, not for future days. So we are seeking to trust him in each moment and cast those burdens of future days onto him. It's not easy, but it's much better than any alternative. It's trust...or fall apart. We are choosing to trust, and praying for grace to trust when we wander from that place. 

Thank you all for listening, for caring, and for praying. 

Sad, Scary News. Please Pray

My heart is broken and it is so hard to write this, but I feel compelled to let our community know that Ian is very much in need of prayer right now. To summarize, his platelets keep falling and this is a likely sign of leukemia returning. They did a chimerism test to see if the percentage of his blood has dropped from 100% his brother. We should get the results at clinic this Friday, but they called today to schedule a bone marrow biopsy as well. Things are not looking good. Please pray his immune system returns to a clear and healthy normal and we don't have to face that ugly battle against leukemia again.

Here are further details if you have time to read:

Ian's recent clinic labs were suspiciously low on platelets and white blood cells, but he was in the middle of a round of antibiotics for a tonsil infection and both the medication and infection were possible reasons for the lower counts. They wanted him to get more labs done in 10 days, once his round of antibiotics was over plus a few days for it to be out of his system. I was about to leave on a trip to Thailand to look for a home for our family to move at the end of summer, and I was ready to cancel the trip until we knew what was going on. We called the clinic hotline in the middle of the night, saying we need to know what is going on and can't wait another 10 days to find out. His doctor emailed us the next morning saying that he was not too concerned, and that they found no leukemia in his blood sample and that I should continue with the trip as planned. So off I flew to the other side of the world one week ago today, while my precious mom took our girls for a two week sleepover at her home in Oklahoma. 

Talking to Ian from Thailand, I could tell he wasn't doing well. He started to get a cough that was the exact same cough he had at diagnosis and that had tortured him through chemo. It was breaking my heart. After a couple days in Pai, I knew I had to return. As I was searching tickets, Ian discovered a rash on his legs from low platelets. I booked the fastest series of flights I could find and started the journey home while he checked into emergency at UCSF.  At each airport along the way, I received texts from Ian updating me on his labs and situation. It grew progressively worse, especially his platelets. With each update, I felt like a thick sheet of glass shattered into a million pieces on the airport carpet. I also had a deep peace that sustained me through each leg of the journey, punctuated by weeping at airports in between. 

I arrived last night and am so thankful to be back by Ian's side and to be present to comfort and support him as we wait for news to unfold. It is sad and scary. I want to believe it is all going to be ok, that his labs will show continued improvement from here and we will all exhale a massive sigh of relief. Please pray for us as we wait. Ian has a local blood test tomorrow to see what is going on with his platelets and white blood counts. Friday morning we will meet with his doctor and work through results and possibly decision trees of the future. 

Please, please keep us in your prayers and petition heaven for good news, for mercy and healing. 

Thank you.

Sa-wat-dee Kah!

We've been home for almost a week now, but our hearts are still soaring from an amazing 5 weeks in the Land of Smiles :D

Here are a few highlights from our trip:

We spent our first week on the coast and I'm convinced we chose the perfect spot to rest and recover from travel and jet lag. I usually prefer simple low budget guest houses, but this time we splurged a bit and stayed at Dolphin Bay in Hua Hin, which is basically a waking dream for families with small children. Playground, grassy areas, pool with slides, kids room with toys and giant beanbags, an endless stream of little girls to make friends and play with, yummy Thai food, Thai massage, and right across the street from a calm sandy beach filled with crabs of all kinds, clams, starfish, jellyfish, and beautiful seashells. We were able to settle in and breathe deep and just be together for a while with nothing to do but relax and enjoy ourselves. What a blessing!

A surprise rainstorm only added to the fun, with puddles to stomp in and lots of little frogs to catch!

After Dolphin Bay, we took an overnight bus to Chiang Mai and then a 3 hour crazy curvy minivan ride up to Pai, our main destination in Northern Thailand. Some dear friends of ours were away for most of December and offered for us stay in their home, so we were welcomed with a beloved home to move right into. The kids jumped right into playing with friends, exploring the land and catching butterflies and grasshoppers. 

 

 

 Ian and I were inspired by the rich community and Christ-centered meditations at Shekina garden three times a week. Here are some pictures from our Christmas Eve celebration:

New Year's Eve in Thailand is dazzling, the sky sprinkled with paper lanterns and exploding fire crackers!!! 

And now we are home, facing the lingering jet lag by grocery shopping at 1am, going to bed at 5am, letting the house go, eating out more than usual, and crashing out on the floor mid-day without warning.

But oh was it worth it!!!