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!

Day 237: Goodbye, Posaconazole!

I am thankful to say we've had smooth sailing these past couple weeks with no further sickness in our family and no reaction to reducing Ian's immunosuppressant. They stopped it entirely this past Friday and so far so good. VERY good news!  THANK YOU for your prayers!

Stopping the immunosuppressant means he no longer needs to take several other medications, one of which has been the daily scourge for Ian since transplant. Morning, noon and night he had to eat something fatty beforehand for this medication to take effect, and each time he had to meticulously swig a couple ounces of Odwalla Superfood immediately after swallowing the loathsome spoonful of sweet, syrupy, anti-fungal fluid. All commotion in the house had to stop during this ritual and we had to give at least a good six feet circumference of personal space around Ian as we respected the intensity of energy it required for him not to vomit while choking it down. Three times a day, for about 237 days.  Every clinic day, every camping trip, every time we left the house for any length of time we had to make sure to pack fatty foods and a sufficient supply of well-chilled Odwalla green drink.  We were excited to finally cut all immunosuppressant last Friday, but honestly I think we were even more relieved to hear he no longer has to take posaconazole!

It also turns out that Posaconazole is fairly toxic for the liver, and they are now thinking that this may be the cause of his liver issues. They will test him again this Friday and we will see if his numbers are any better after a week off of the medication. If this is the case it would be good news, meaning it isn't SOS or GVHD. So far his liver function tests remain elevated but have not increased significantly. He is taking huge quantities of green tea extract and after seeing if there is any change on Friday from dropping the posaconazole, we plan to begin other natural liver cleansing herbs including milk thistle.  He wasn't able to start these herbal supplements while still on immunosuppressants, but now that he is off that delicately balanced cocktail of medications we have a lot more freedom to explore the world of natural health support. 

It will still take a while for Ian's immune system to develop now that it is no longer suppressed, which means he is still in the danger zone for GVHD and quarantine is still in effect. The doctor says he should be ready to re-enter the social world of work/church/etc. around December 1st if all goes well. Asha is planning to celebrate his re-entry with multiple trips to the Santa Cruz Beach Boardwalk and Happy Hollow Park and Zoo. That might be a bit too much for him to start with, but I'm sure she will be more than thrilled to return to occasional park days and play dates and general freedom from the imminent danger of germs! 

We have really enjoyed this time of slowing down, being home, and being together. Part of me is sad that we are getting close to the end of this special season of togetherness.  It has felt like a cozy chrysalis for our family.  Ian and the girls have bonded like never before.  Part of me wishes we had another year to grow together in this protected space. But another part of me is also excited for another milestone crossed and a new beginning ahead.  And everything in me is filled with gratitude for how well Ian is doing and the progress he has made! 

Day 221: Update

Ian has been fairly low energy this past week. His liver function test results yesterday were pretty much the same, some slightly up and some slightly down. They decided to triple his green tea supplements and focus on getting him off immunosuppressants as soon as possible. They expect there to still be some leukemia cells hiding out, and the chances are much more likely the longer his immune system is suppressed.  The whole point of the bone marrow transplant is to have GVL (graft vs. leukemia) and usually GVHD (grafts vs. host disease) comes with the territory. The transplant will be unsuccessful if any leukemic cells survive,  so they cut his immunosuppressant in half yesterday and are hoping for him to be completely off within a few weeks.  This is an aggressive move and opens him up to more liver issues as well as GVHD, but the benefit of a possible cure outweighs the risks. Please pray this goes miraculously smooth and all leukemic cells are detected and destroyed!

On the home front,  two days ago I was hit with a miserable cold/mystery allergy attack. We avoid anyone whose had symptoms or has been exposed to anyone with symptoms of illness for the past two weeks, and yet now here I was sneezing and nose dripping all over our home and kids! I washed my hands a billion times, I swear. Friday morning, some dear friends swooped down with angel wings to pick up the girls for a sleepover so I could get some rest and to avoid our children becoming deceptively cute germ vectors for Ian.  I'm feeling much better today after a blessed 24 hours of rest and so far I'm the only one whose been hit. Please pray it does not spread to anyone else in our family...

Thank you!

Day 215: SOS

I have some good news and some bad news:

The good news is that Ian's recent chimerism still shows 100% donor - Hooray!!!

The bad news is that Ian's liver is not doing so well. I can even see it in his eyes - they are turning yellow. His doctors are now thinking it is a mild form of SOS returning, based on their readings of his blood work. There have been instances where green tea extract has helped patients who refused to do the clinical trial, so we started today on a high dose of green tea pills. I am also determined to get as many organic farmer's market vegetables into his body as possible this week by juicing and cooking up a storm. We really don't want him in the hospital another three weeks!

Please pray that we see improvement this next week when they check his liver function again.

Thank you!

Day 204: Happy Birthday Ian!

Today is Ian's birthday! 

I wish I could throw him a huge party to celebrate, but with quarantine that is utterly impossible. So I've decided to wait and throw a really big one next year.

Ian was born on Labor Day, so somehow even if it doesn't fall on his birthday it feels like a special holiday. We celebrated by going for a family hike at Rancho San Antonio. 

Ian set up a hammock next to a small creek and watched the girls creek walk. 

It was a very special day for Asha - she lost her very first tooth! Her bug container wrist band came in handy as a tooth holder for our hike back, and a perfect display case to proudly it show off.   

Ian and Asha ran races the whole way back to the car. So good to see Ian active and outdoors again!

Update on Ian's health: 

Clinic days have been pretty uneventful. His liver counts are still up, but not alarmingly high. They are still keeping his immunosuppressants high, presumably to protect his liver from GVHD and give his body more time to adjust to his new immune system.  I am hoping to be able to go with him to clinic this Friday to meet with his doctor and ask more questions and get the latest chimerism results. We should have a better idea of where he is at and possible next steps after this appointment.

These days, every day feels like Ian's birthday.  I know it sounds sappy, but it is honestly the truth. Each day is a new day to celebrate life together and be thankful for each precious moment we have with him.  Every day I remember what it was like with him gone for months at the hospital, his life hanging by a thread, and this gives real perspective to my daily home life. One of the deepest blessings of this ordeal has been the consistent reminder of how ephemeral our lives really are and not to take each other - or our own lives - for granted.  Every day, every breath, is a gift from God to be thankful for.  Not that I remember this all the time, oh how I wish I did!  I am so tempted to worry about tomorrow or stress out over silly and insubstantial things in the heat of the moment. But having the reality of cancer in our lives gifts us with built-in reminders that call us to slow down and savor all the little things that make life sweet.  

Happy Birthday Ian, My Beloved...

May we have many, many more years and may we savor each day of them together.

We love you Mr. Brown!!!