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!