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!!!

Happy Thanksgiving!

We have so many things to be thankful for this year, but there's one thing that clearly tops the list. Ian's labs continue to remain clear, and apart from a short stint of shingles he has come through this past year unscathed. How grateful we are for all the prayer, support and Divine grace that has carried us through these past two years.  

Now that Ian is clear to fly internationally, we are making the most of it with a family vacation. Our flight to Thailand leaves in half an hour, and we are more than ready to get a month away together! How appropriate that this trip of celebration begins Thanksgiving Day :)

Initial Biopsy Results

We are still waiting for the chimerism report from his recent biopsy to make sure his bone marrow is still 100% donor, but all the initial biopsy findings look clear. So thankful!

Day 366: Birthday!!!

Today is Ian's one year "birthday" - can you believe It has been a full year since his transplant? My heart flutters with thankfulness as I remember where we were a year ago and to see how far we've come!

We were taking a walk as a family the other day, the same walk we often take. As we rounded a corner toward home, I had a flashback to exactly a year ago as we were preparing for transplant with so many scary unknowns ahead of us. I remember Ian's bald head covered with his down jacket hoodie to keep him warm, and I remember my mind swimming with a million questions.

This time, a year later, we were walking carefree with Fiona riding playfully on his shoulders and Asha chattering behind them on her bike. I could almost hear music playing in the background, like it was the perfect happy ending scene to an emotional movie.

Ian's birthday bone marrow biopsy is sometime next week, but all his blood work looks good so far. We aren't out of the woods yet, it will take another year for his immune system to mature and at least a couple more years before he is considered cured.  But as you can imagine, we are incredibly thankful for how far we've come! I feel like God has carried us, sometimes through quiet Divine graces and often through the loving support of community, family and friends. Thank you all so much for walking this with us and helping to carry us through!

Our dads are in the heat of the battle right now, however. Ian's dad is in the ICU with heart and lung issues.  My dad recently began a stronger round of chemo to treat his aggressive lymphoma. It is painful  to see our parents going through this and to be so far away. The girls and I were in Oklahoma with my parents this past week and a half, hoping to add a helping hand and some cuteness therapy, but it is such a short time compared to the long journey they have ahead. 

Fiona's first experience of snow!

I pray the Lord carries our parents through each of these difficult days as he has carried us this past year. It's been a crazy long season of reminders that these bodies are so ephemeral, and that every day with each other is precious. Every day. 

Especially the past 365 of them...

Happy Birthday Ian!

Day 316: Merry Christmas!

We're back! We flew in last Wednesday, but it feels like yesterday since we are still considerably jet lagged. Ian had his latest clinic last Friday with all labs still looking great. Best Christmas present we could ask for. He's also now graduated to monthly clinic appointments, which makes life a lot easier now that he is back at work full time especially. This weekend we plan to drive to Tahoe to buy a car and then up to Reno to celebrate the holidays with family. I'm glad there are 12 days of Christmas, because we just started decorating our tree tonight :) 

What a journey we've had these past few weeks! It's been a bit of a whirlwind, but a wonderful one well worth the moments of sanity stretching delirium. We've played on an island beach with dear friends and sipped fresh baby coconuts, we've taken an elephant trek through river and jungle, we've fed parrots and even baby tigers by hand. But the best part of our trip by far was just spending time with good friends who made us feel right at home while half way around the world.  Here are some pictures from our recent adventures: 

A little crazy but...

The girls and I are at the gate at San Francisco Airport waiting to board a flight to Bangkok, Thailand. We are going to visit a dear friend in the north who sent her husband to be Ian's caretaker for a month at the monastery, and get a little fun time away after a long, crazy year. I'm excited and a bit nervous, and already missing Ian after saying goodbye an hour ago...

Yesterday was our 9th anniversary and this year we were able to truly celebrate! 

So thankful...

Please pray Ian's health remains strong while we are away and that our trip goes smooth. 

Thank you!!!

Day 292: Thanksgiving

Last year, Ian took Thanksgiving week off for a family road trip for the holidays. He was scheduled to go back to work the Monday after Thanksgiving. He never did. Tomorrow, the Monday after Thanksgiving, Ian is returning back to work.  His "doctor's note" (required by the company for his return) officially declares he has made a full recovery. Needless to say, we are very thankful!

On a sad note, our car was destroyed in a five-car-pile-up on a Los Angeles freeway yesterday. At impact, there was a semi truck on the right and no shoulder on the left due to construction. Our family walked away without a scratch.

 

Although we are a bit shook up and sad to say goodbye to our beloved family car, we are thankful there were no obvious injuries and that we made it through alive(!) We are also thankful that Ian works  close to home and can ride his bike to the office now that we have no car.

I confess, the kids and I are a little sad that we won't have Ian around as much anymore...

But I am super thankful that he still has a full-time position to return to, and that he enjoys his work. The people at Riverbed have been AMAZING, over-the-top, extravagantly supportive throughout this entire ordeal and I cannot express how much they have cared for us. For this we are incredibly thankful.

And so we will begin a new season tomorrow, off of quarantine and returning more to life as it was before leukemia took us for a spin.  Since returning to work full time will take a lot of energy for Ian, we will be slowly making our way back into social life and not jumping in all at once.

Thank you so much for all of your prayers and support this past year!

Day 260: Liver Update

Friday's clinic labs showed a glorious (two week) trend: Ian's liver appears to be healing! 

We are back to smooth sailing. So thankful!

Ian here...

"Oh my ~!  What was I thinking?", Christy said as she was in labor with Fiona.  "I really wanted another baby.  How did I forget about all this?  I remembered labor with Asha so pleasently."  That's how it is.  You forget.

This morning was full of sunshine.  Life has been in a wonderful place of normalcy.

I got into the UCSF clinic today for my weekly appointment.  I was walking down the long hall which is lined with many little doctors' exam/consultation rooms.  In one I spied another patient who I had met in the hospital getting an allogenic BMT (Bone Marrow Transplant from someone else) about the same time I did.  I saw her 3 weeks ago in the clinic.  She looked great.  We were both doing great.  Now she was not.  She looked grey and yellow next to the healthy rouge of her husband's skin.  There was a big cut in the middle of a shaved patch on her head.

I stopped, glad to see them but I quickly wanted to know what was going on.   Ehhh, I did not want to know.

She has AML like me.  But it came back.  It's in her spinal fluid.  A growth of it was in her lower spine making it so she could no longer walk.  They are giving her chemo through a sub dermal port they installed in her skull (hence the incision in her head).  There are other tumor like things on her belly.  Maybe they'll give her more stem cells from her donor.  It didn't sound good.  She didn't look good.  It was good to see her, but not this.

We talked about what our doctor tells us.  He doesn't always answer our questions easily.  I asked her how much time she had when she was diagnosed and started treatment.  Doc gave her about 24 hours to live, maybe 2 days, something like that.  Some of the other doctors said it was too late to treat her.  Doc finally told me my prognosis a month or two ago: I might have had a week or so to live if I hadn't started treatment when I did.  When in a duel with AML, its like a pit bull charging you, you only get a chance to fire one bullet -- don't waste it, and don't miss.

I forgot about many of the things I've been through; I don't want to be reminded.

I'm reading the blog of someone going through an allogenic BMT right now.  I'm reminded of the feeling of someone jumping down my mouth and throat with a knife, slicing me up, because the chemo killed and removed 2 mm of flesh from my mouth, tongue and throat.  I remember not being able to swallow without wincing in pain.  Oh, and that suction tool from a dentist they gave me so I didn't have to swallow,  I forgot about that too.  It would hiss at me while I was sleeping.

How did I forget?  Why do I have to remember?  It was sunny in Sunnyvale when I left,  San Francisco is grey.  That's how I feel inside.  I had been making plans for the next years.  Now I'm thinking what I may get to do for the next week or two if I live.  Sometimes I forget that I'm going to make it through this.

I had my blood drawn, and my appointment to talk about my results.

This is my first week off of immunosuppressants.  It's precarious.  They want "Graft Vs Leukemia" (GVL), but that comes with the possibility of GVHD (where my new immune system can attack my liver).  It's looked at as a good omen if one has some GVHD since it's so highly correlated with GVL happening -- which is the whole point of having a BMT.  My immune-system was not able to recognize and kill Leukemia, so we need another one that can, we want GVL.

Back to my results.  My liver hasn't been doing so well the last few months.  The Doctors figured that if my liver was doing better this week, then we could chalk it up to toxicity from some of the medications that I stopped doing a week ago.  No such luck.  It's worse.  :(

I'm told that the liver cells have unique chemicals in them, and that when they die they release those chemicals into the blood and that can be measured.  If the levels rise, there are more cells in the liver dying.  Here are graphs of two of those chemicals, the spike in the middle of march was from when I had SOS.

The doctor isn't going to put me back on immunosuppressants yet.

I was using the restroom on my way out of my appointment, where I realized my hair is falling out.  Yeah, I can pinch the hair on the back of my head and slide my fingers off and I end up with about 13 hairs.  It works on my arms too.  What the heck?  I'm not on chemo, this isn't expected.  So I went and found a doctor.  He ordered thyroid tests.  I gave him a confused stare.  But he didn't tell me any more.  He smiled, said I looked great, like they hadn't ever done anything to me.  

"Thanks, you're a sweetheart," I said.  He is.

I went home.  I often feel my emotions physically before I can feel them emotionally.  I felt like something was leaking inside my gut.  Like a big abscess of uneasiness, a leaking in my gut, my mind races.  It's going to be hard to fall asleep.  I think I feel my liver.  There's tingling/numbness in my toes.

I look for shelter from anxiety.  I know where I usually find it.  I've spent along time thinking about what I want to do with the few days I might have left to live.  I have plans for the years ahead, but things change, I have to adjust my plans down to days.  I want life!  I've spent many days doing things but not really living.  But I want to really live.  What I want for the next 10 days is the same thing I want for the next 10 years.  I want life, life that contents and satisfies my soul.

There is wisdom in the Christian tradition that says, "Guard your heart beyond all vigilances for from it flow the sources of life."  There are two things said here, 1: guarding beyond all vigilances, and 2: the sources of life.  (1) Of guarding it is said to do it beyond all vigilances.  I can be vigilant to guard my relationship with my wife.  I can be vigilant to be present with my kids.  I can be vigilant to pursue my career and my work.  I can be vigilant to pursue my physical health.  But it says beyond all these vigilances be vigilant to guard your heart.  This speaks of the priority of this vigilance, the importance of guarding your heart.  (2) Of the source of life, it says that it flows from the heart (soul) and that one must protect this for it affects all the other pursuits one would care to be vigilant about.  It says that there is a source of life, which when fouled, all the other things one is vigilant about will not have life in them.  The wisdom says that one can tend to this source of life and keep it flowing pure and springing with life, or it can be stopped or fouled.

Guarding the springs of life is a practice of gazing upon eternal truth.  Plato talks about it saying, the immortal soul soars upwards into the heavens, there to behold "beauty, wisdom, goodness, and the like; and by these the wing of the soul is nourished, and grows apace; but when fed upon evil and foulness and the opposite of good, wastes and falls away."  Plato is right, starving the soul or worse, gazing upon filth, will bring lifelessness and death to all the other things one pursues, but gazing upon eternal truth will nourish the soul.

Things in life keep changing on me.  How much longer will I have till I meet death?  Yet one thing does not change, life itself.  The changes in life cause me anxiety, but beholding life and truth who does not change, I find shelter from anxiety.

When I behold truth, I am filled.  If my soul is a cup then it is filled as I gaze upon truth.  It overflows and I cannot contain it.  That's why I break my silence to write to you, my cup overflows.

I guard my heart, and Behold!