Day 82: Inner Storm

I'm sitting at the International Arrivals lobby of SFO, awaiting our final caregiver flying in from Asia. I will share more about this in an upcoming post, but for now I will just say that a dear friend has crossed the sea to support Ian and our family in this third leg of our journey. We feel deeply blessed.

Aunt Holly left Thursday morning, and I have been holding down the fort since then. Poor Ian! I've been a walking storm of emotions this past week, no exaggeration. I'm not really sure why. There was a definite stress escalation as we waited for the results of Ian's biopsy along with some pending thyroid tests for me. We had a misunderstanding of my thyroid cancer marker results just hours after getting the positive report from Ian, which was a terrifying prospect to imagine. I was in shock, heartbroken, unable to fathom the effect this would have on Asha especially. Thankfully, a few hours later we discovered that the secretary had misread the results and I'm still in remission. Whew! Those few hours of grief took a toll on my equilibrium, however.

Perhaps another clue to my emotional weather pattern is now that the outer storm has calmed down a bit it has given space for my inner storms to surface. I'm not sure why, but I do know I've been battling a lot of ugly thoughts and feelings and sometimes words. Empathy and compassion have been in short supply, while anger and frustration have arisen all too quickly. I want Ian well, and I want him well NOW!  I want him to exercise regularly and be strong for us again. I want him to be able to eat and take his medications without the need for constant assistance and reminders. I at least want to see some progress, but honestly I haven't.  And it makes me mad. I don't want to blame him, but I find myself doing just this. It's wretched but true.

So this is my confession. I need patience. I need compassion. I need Divine intervention. I need deeper foundation. I am weak and tired. Please pray for the Lord to be my strength, my anchor of hope, the rock I stand on. Please pray that He will speak peace to these inner storms.

Thank you!

Day 77: Biopsy Results

I'd rather have Abba better than to live in a castle.
- Asha


We were given wonderful news today.  Ian's biopsy results show that he is in complete remission! Technically, this means there is no trace of leukemia in his flow cytometry.  If he continues in complete remission for at least 3 years, he will be considered cured.  Oh Lord, let it be!  It will take a few more weeks for the chimerism and cytogenetic results which will determine whether or not to proceed with the bonus round of chemo, but we are incredibly thankful that everything so far is the best we could hope for.

Ian's remission does not change the fact that he will continue to be on immunosuppressants for many more months in quarantine.  His body is still very weak and vulnerable in the recovery process, so we are still very much leaning on your prayers. Tonight, however, I think the best prayer to pray is a big, dancing, shouting, joyful...

 THANK YOU!!!

Day 72: Bone Marrow Biopsy

Warning! This post is not for the squeamish.

Today was bone marrow biopsy day at the clinic. It was Ian's fourth time experiencing this harrowing procedure.  First, they screw a massive "needle" into his hip bone and then suck out several tablespoons of blood.  Next, they screw the "needle" in even deeper and take a core sample of the bone itself. I don't know how Ian does it.  I nearly pass out every time. I have to sit down and look away, but he is somehow always able to engage in conversation the entire time.  At Ian's request, I took a video of part of today's biopsy for your viewing pleasure:

Yes, they got it! Thankfully in one shot. There have been times when they had to go back and screw it in all over again to get a good core sample of bone. This is what it looks like (between the two blood clots):

We should get the preliminary results at clinic Tuesday morning. Friday we will see the doctor and hear his summary of the chimerism and biopsy results and what the the next step will be.  For weeks now, Asha has been praying nightly that Ian will be better by her birthday (July 26th) or on her birthday. This past week, she has expedited her request to "by the end of April." At dinner tonight, she prayed he would be better by tomorrow. Amen, Asha!  Let's pray the biopsy results will only confirm an answer to her prayers and ours.

Thank you!

Day 69: Catching Up

Not a lot of news this week, I'm thankful to say.  Ian is still sailing on fairly smooth waters. He had a chimerism test a few weeks ago to see how much of his blood is his and how much is his brothers. The results were in today: 6% Ian, 94% Shawn.  He didn't see the doctor today, so we are not exactly sure how to interpret this. Friday he has the big bone marrow biopsy and I'll let you know if we find out more. Once we have the biospy results, they will decide whether or not to pursue an additional round of chemotherapy. Those who go into transplant with traces of the disease (like Ian) tend to have a higher rate of reoccurrence, so it is likely that he will need a bonus round. It is a lighter dose for just five days, and he can stay at home during the treatment, so we aren't sweating it much.

On the home front, my dad has been suffering kidney stones the past few days and is in significant pain off and on. We would really appreciate prayer for quick and complete relief for him! My mom, the kids and I are doing well. Fiona is growing up so fast - check out this picture of her playing with Asha's dress up toys!

The girls have been taking turns visiting Ian at the monastery. 

Today I baked some fresh bread and took both girls over to enjoy it with him. They started off with a dance party in the living room, Ian providing the beatbox rhythm to keep the girls grooving. 

Next, we went upstairs for a tickle party:

After the tickle party, Ian was plum worn out. The girls worked together to make him nice and comfortable for a nap, complete with pillow and blanket and lamby. He then fell asleep for a couple hours, just like that!

Day 63: Clinic Day

Yesterday was our first clinic day since Ian's release from the hospital. His blood counts were great - no transfusions needed! His next bone marrow biopsy is scheduled for two Fridays from now. His last biopsy after chemo and before transplant showed .3% cancer cells still remaining, not a huge percentage but not full remission either. Let's pray this next one shows full remission. While we're at it, let's just pray every biopsy from here on out shows full remission!

Some have asked about Asha... She never actually came down with a cold, but we have stayed away from Ian just in case. Nobody else has gotten sick either, so I'll probably bring the girls for a visit in the next day or two. I'll try to snap some pictures or videos of them together for the next post.

Speaking of pictures, Ian texted me this surprise photo Saturday:

The rebel took a 3 1/2 mile walk to farmer's market and back. Glad he wore the hardcore bird flu mask! I'm also glad he is pushing himself. Recovering his strength may be a longer road than we expected, but I have no doubt he will do it.

Thank you for checking in on us and for keeping the thoughts and prayers flowing!

Day 59: Quick Little Update

Thankfully, there hasn't been a lot of news around here lately. It has been pretty mellow, just waiting for the 21 days of Defibrotide to come to an end. Ian's last dose was Thursday and...

He is back at the monastery!!!

His Aunt Holly is the current caretaker and what a blessing to have her here. She is a trained nurse, a health-conscious vegetarian, and an all-round amazing woman. Asha is having some mystery cold-like symptoms (though her energy hasn't waned a bit) so we are all keeping our distance for the time being. We miss seeing Ian, but are so thankful he is in excellent hands with Aunt Holly. Please pray whatever these symptoms are, they would clear up quickly and nobody else (especially Ian) would catch it. Also, there is a chance of the SOS reoccurring, so please pray his liver only continues to heal from now on.

Thank You!

Day 53: Happy Resurrection Day!

Death has been swallowed up in victory.
Where, O death, is your victory?
Where, O death, is your sting?

- 1 Corinthians 15:54,55

Today is Resurrection Sunday. I have baskets of sweets and surprises waiting on the table to greet the girls when they wake up, but I pray that the rich meaning of this holiday sinks in a little deeper this year for all of us.

Ian is doing well. He has only needed one blood transfusion in the past four days, a major improvement from needing them daily! He is eating well and walking a mile or two daily. The doctors seem to come around more to be entertained by Ian's jokes and stories than to monitor his health. We are so thankful!

On the home front, Asha is starting to ask big questions relating to Ian's sickness. Did God make Abba sick? It's a simple but weighty question, without easy answers. Ian wants to have a good discussion with her about it sometime soon. I'm glad he does, because I'm not sure how. There's great mystery in how God's omniscience and omnipotence dance with his perfect goodness and loving kindness.

I don't have an answer. But I do know that even in these trials I can take comfort in knowing the Source and Sustainer of all is Good. And this season of Easter is a reminder that He is not removed from the suffering of humankind. He has become one of us and experienced firsthand the trials and temptations we go through, the rejection and the suffering and the jaws of death. He faced all of these and overcame, blazing a trail for us to take His hand and follow, fearless. As a cancer survivor myself, I know firsthand the peace and joy of facing death without fear and it has been beautiful to see Ian glow with the same confidence I felt in the fire. What a gift!

And so today we will celebrate. We will read the story of Jesus conquering death and we will rejoice in the hope we have received. We will take His hand and set our hearts to follow, day by day, come what may. We will set our hope not on the fleeting things of this life but on the Giver of life who will one day wipe every tear away, always and forever...

Happy Resurrection Day!

Day 48: Hangin' In There

It's hard to believe we're over half way through the first 90 days! Liver failure was a rather unexpected bump in the road, but thankfully he seems to be recovering quickly. I'm sitting here, watching him sleep, feeling thankful for all the hurtles that are now behind us.

My dad flies in tonight from Oklahoma to add more helping hands at home. He has mastered the art of convincing Fiona to go back to sleep in the middle of the night, so having his nighttime backup again will be especially helpful. I've missed not being able to spend the night with Ian and be there when the doctors come for their rounds every morning to talk about recent test results and answer questions. With my Dad here, I'm hoping to be present for a few of these and get a better grasp of everything on the table for Ian right now.

So far, things are pretty quiet. Although he still requires platelet transfusions daily, his counts seem to be creeping upward. The GVHD spots have cleared up and he no longer needs to treat them with "chemo" lotion. It has some scary side effects with long term use, so we are glad it worked fast. Ian vomited this morning, which is always a red flag, but since it only happened once they aren't too concerned. He eats and holds down every sandwich I bring him, but he can't even look at the hospital menu without being flooded with nausea. I'm trying to keep him stocked with sandwiches as best I can. Asha and I had an assembly line the other day making 8 turkey/cheese bagels for him, and he wolfed down two of them within minutes of our arrival! Although bagel sandwiches seem to always win, it's a moment by moment quandary what he is craving or might be able to stomach. Those of you who have experienced pregnancy may know what I'm talking about. If anyone lives close to San Francisco and wants to help keep Ian fed, please let me or Ian know!

The big prayer right now is for the GVHD to stay under control. Now that it has popped up, they are more concerned about it showing up in other places as well. Please continue to pray it stays nice and quiet, silently attacking the cancer but ignoring Ian's vital organs. If the GVHD stays under control, then they will start reducing his immunosuppressant after he completes his first 90-100 days. Please pray all goes smoothly so he can eventually be off of immunosuppressants completely. Oh how wonderful that would be...

Thank you!

Day 45: Rejoice and Lament

Learn this lesson well, my friend

There’s a time to rejoice and lament

Every season will find an end

All will fade and be made new again.

-- Josh Garrels 

I've been listening to this song by Josh Garrels a lot lately. I have it on repeat as I drive back and forth to UCSF. It's a beautiful song and so many of the lyrics seem to fit like a glove with our lives right now. If you want to hear it, here's a link:

Rejoice and Lament

We have several reasons to rejoice. The biggest one right now is that Ian's C diff appears to have cleared up already! This is a very good thing. He was significantly more disappointed about getting C diff again than he was about having leukemia.  He even had a nightmare of being a C diff leper the rest of his life, forced to always wear the yellow gown and gloves in public and watching mothers grab their children to walk on the opposite side of the street to avoid him. What a relief it has cleared up so fast. Thank you for your prayers!

More good news is that Ian's stomach bloating continues to decrease. They did another ultrasound of his liver and fluid is now flowing in the right direction. Such a relief! Many have asked about my mystery birthday illness and I'm convinced it was just allergies since it cleared up that afternoon with no lingering symptoms. Thank you for your prayers on that front, too.

Now for our current concerns. The biopsies of his toe and groin came back positive for GVHD, so they are putting a topical immunosuppressant on those areas in hopes of quieting it down. A little bit of GVHD can be a good thing, signifying that his brother's immune system is fighting foreign cells which include the cancer. Please pray that it destroys the leukemic cells completely, but doesn't fight against Ian too much in the process.

Until today, Ian's energy and strength have been rising daily.  He has been dancing and singing and laughing and joking like the Ian we all know and love. What a joy it has been to see and hear that spark of life blazing once again! The girls even came for a visit yesterday and we all had such a sweet time.
Today something is off, however. He feels like his liver is hurting again, like someone punched him in the stomach, like it did when this whole liver failure thing started a couple weeks ago. He is pretty tired and low energy again, too.  His bilirubin levels spiked abnormally high a few days ago, but came back down pretty fast. They are watching him very closely, but so far the pain is the only indication that something isn't right. My heart laments to see him so weak and in pain again, especially after experiencing him so lively these past few days. I know he will be back again soon though, dancing and singing and laughing like he was yesterday...

Day 41: Roller Coaster

It's a new day, with new twists and turns on this roller coaster ride. On the bright side, Ian continues to improve in terms of fluid retention and liver enzyme levels. He no longer looks and feels 6 months pregnant. He is feeling more and more life and joy and spirit rising. We are so thankful for this!

On the down side, it's been a rough day. Ian has been having some intestinal issues that were just diagnosed to be a recurrence of Cdiff. He was really bummed to hear this, remembering this plaguing him for so many weeks during his first round of chemo. It is a super resistant bacteria that is really, really difficult to kick. Please pray this superbug is healed supernaturally quickly!

Ian is still needing platelet transfusions at least once daily and red blood cells often as well. They are hoping once his liver recovers, his blood counts will recover as well. Please pray this happens ASAP.

Ian has also been struggling with nausea and vomiting. He's been living on two odwalla protein shakes and a bottle of water per day, but today he has been trying to stomach some solid food. He held down a popsicle this morning and a bagel this afternoon. Please pray he will be able to continue eating more solid foods and hold them down.

They are also concerned about a couple suspicious rashy patches being signs of GVHD so they took a biopsy (a "hole punch" of skin) off his toe and one off his groin. Not much fun. Please pray all of these complications clear up quickly and smoothly and completely.

Thank you!