Day 102: Family Clinic Day

Well, we did it. We managed to survive a clinic day with the kids!  I'll even dare say we had fun. Up until a few weeks ago, it was considered flu season and children were not allowed inside the clinic. With flu season over, children can now come as long as they are healthy. So since there really wasn't another option, we decided to bring them:

I wish I had been able to capture the pure bliss on Fiona's face as she rode on Ian's shoulders up the elevator and into the lobby...

There are hours of waiting involved in clinic days. Waiting for vitals, waiting for blood work, waiting for the Nurse or Doctor, waiting for the pharmacy to fill new prescriptions. Fiona kept herself busy by climbing up and down this chair approximately 137 times...

The wall of the clinic lobby is glass and looks out over the entire city of San Francisco. It's a beautiful view and also proved to be a nice distraction for the girls.

Before I continue the story of our trip, I first want to share a bit about Chinua, our third and final caregiver.  Or actually I will start with his dear wife, Rachel. She is holding down the fort back in Thailand with their 5 children, the youngest barely 3 months old. I feel like the first thing to be said (or shouted from the rooftops) is "THANK YOU RACHEL!!!" because it is her loving sacrifice that has made it possible for Chinua to come here.  Another word about Rachel - she is an incredibly gifted artist, photographer and writer. If you visit her blog, Journey Mama, you will see. She has this amazing ability to open her heart and pour it out in words, beautiful words that cause you to open up and find your own heart written there, too.  She also posts the most breathtaking photos of their family and adventures in Asia.   Chinua and Rachel are two of the most deeply present, extraordinarily gifted, and profoundly inspiring people we know. We dream of one day living next door to them!

But back to family clinic day. Chinua squeezed into the back of the car with the girls, telling stories to keep them entertained on the hour-long drive to SF. Here is an example, though I'm sure my words won't do justice to his storytelling genius. First, he asked if we had ever heard the story of the time when his face fell off. He said it had happened when he was hang-gliding over a cheese-grater factory and had a mishap. He then proceeded to tell the most hilarious story that kept us on the edge of our seats laughing the entire way! It was awesome. 

As far as the actual clinic visit, everything went well. These days it seems more like meeting up with good friends than a medical appointment, and it was a special bonus to bring the girls in person after months of showing pictures and telling stories.  All of Ian's doctors and nurses are also specialists in lymphoma, so I'm thankful to have them as an amazing source of information and second opinions as my dad's treatment journey begins. They didn't change Ian's dose of immunosuppressant, but if all goes well they will probably reduce it a fraction next Friday. Slowly, slowly... Each fraction it is reduced, the closer we are to a somewhat normal life again. Each week that goes by without complications, I feel like I can breath a little easier. 

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One of the really exciting things happening at home is Freddie the slug and Daffodil the snail.  Just before my mom left, she took Asha on a shopping spree and bought her a huge arsenal of safari gear. This included various useless dress up items but also a bug vacuum (to gently suck up bugs to observe), a magnifying glass, and this bug box:

If you look closely, you will notice a slug escaping. The day my mom bought this equipment for Asha, there was a huge spider in our bathroom that my mom gently sucked into the vacuum and placed in the bug box. Fiona was utterly captivated by it and began doing the "bug" sign incessantly. The next day they set the spider free, but found a slug and a snail (Freddie and Daffodil). Yesterday morning, Fiona was obcessed with watching the "bugs" and while we were watching, Freddie slowly squeezed through a tiny hole and escaped!  Fiona was horrified at first, but quickly resumed squealing with excitement saying "bug!" and doing the sign for bug. Oh it was epic, I tell you. She was saying and signing "bug" nonstop for at least a half hour, no exaggeration. Totally the highlight of my week, and exactly what I needed with the news about my dad weighing heavy on my heart. Below is a video I took during the episode. Although it has nothing to do with Ian, I just had to share it :)

you tube link

Day 100: Sad News

I had a feeling it was dangerous to post about how nice and boring everything was.  I wrote the previous post a little past midnight this morning, then woke up to find my mom packing to fly back to Oklahoma. My dad had returned to their home a couple weeks ago and was not doing well. We both had deep peace and felt strongly that this was the right thing to do, so I got dressed and packed the kids in the car to bring Nana to the airport. She was able to make the only morning flight available, just in the nick of time. My dad had several important doctor appointments today, and she just called with the news.  His lymphoma has spread significantly. A port will be put into his chest on Tuesday and he begins chemotherapy Wednesday.  My heart fell to the floor.  Cancer. Chemotherapy. Ports and catheters...this all sounds way too familiar.  

My heart is aching to be there, to support him like he has supported us. Or at least a fraction of it. My dad seriously spoiled us with his love. He even slept in the lazy boy chair next to Fiona's crib most of the night, so that he could say "go back to sleep Fiona, everything's ok" whenever she would start to fuss. Usually she would then roll right back to sleep. You can only imagine how many precious hours of rest his loving sacrifice gave me. I don't know if we could have survived with him, but I'm sure we wouldn't have been able to thrive as we did.  So many sweet times with Grandpa here, so many precious and priceless moments.

So while you pray for Ian, would you please, please also say a prayer for my dad? Please pray this new treatment for lymphoma is successful and we can all rejoice together at the end of this...

Day 100: Day 100!

Can you believe it? Today is day 100!  This means we survived the most risky season! Not without complications, but we made it! Thank you Lord. Thank you, thank you, thank you. I really believe we are going to whoop this thing.

You may have noticed it's been a couple weeks since I've posted any updates. Thankfully, it has been smooth sailing. It's been so smooth that I haven't had any real news to post. Isn't that wonderful?  Let's pray it stays like this, nice and boring, for the next few months.

Since I don't have much news, I'll share a few pictures from the past week:

Here Ian is giving Fiona her first music lesson:

This is my amazing mom, helping homeschool Asha:

And here is my little foodie, on our way home from the monastery, with cookie and cheese and sweetness all over her face :)

Day 86: Sunshine!

I am thankful to say that the funk I was in has passed and the sun is shining once again. I've had lots of grace with myself through this whole ordeal, but it sure is nice to have those sweet loving feelings back. Thank you for your prayers!

That's Fiona doing the "abba" (daddy) sign on our way to visit Ian at the monastery today. My little ray of sunshine!

Now for an update on Ian:

The final biopsy report came back today and cytogenetics were completely normal with no disease. Great news! The chimerism was lower than expected- only 90% (10% T cells were still Ian) - which means they will pursue lowering immunosuppressants early in hopes of raising the percentage.

Last week his immunosuppressant was reduced by 25% and so far he seems to be handling it pretty well. No significant side effects detected. This is good! If all goes well, they will reduce it by another 25% next Friday.

We are glad to be reducing the immunosuppressant right now. It has been causing neuropathy (numbing and/or burning) in his feet which is exacerbate by any friction, such as walking or running. This obviously reduces his motivation to exercise. In spite of this, he has been pushing himself to walk or do yoga daily and this is helping him slowly gain strength. I was whining about not seeing it, but truly there has been progress.

We have also graduated from clinic visits twice weekly to only once a week! Clinic days take a lot out of us and really mess with Ian's attempts at rhythm and exercise, so this is a wonderful development.

Ian's doctors are still debating further chemotherapy. Their only hesitation is the risk of a reoccurrence of SOS in his liver. Regardless of his current remission, the ultimate cure rate for Ian's scenario is about 20%. We aren't shaken by these statistics, but I share this only to give context for why they feel this additional chemo is important. It is a mild dose that is somehow supposed to help mark any remaining leukemic cells for the new immune system to destroy. It seems very likely that they will decide to go ahead with this, but it is risky with his liver so recently compromised. Please pray wisdom for the doctors in making this decision! Also, please pray for a smooth road as they lower immunosuppressants. This is a critical time when the new immune system can turn on Ian in various scary and disastrous ways. I get too dizzy thinking about the risks and possibilities ahead, so I'll just keep it simple and ask for prayer for no complications.

Well that is all the updates I have for tonight. Thank you for supporting us in our ups and downs, in blue skies and storms. It means so much to us!

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!