Day 111: Home!

It seems almost too good to be true...Ian is back home! After over four months, our family is now all together under one roof again. This is pretty exciting, but also a bit overwhelming as it is a lot of work moving and keeping up with Ian's care while also being a Mom to two small children. I'm trying to keep our home as sanitized as possible with a toddler and 5 year old, in addition to finishing up the move and integrating all the boxes of odds and ends from the monastery into our home or finding new homes for them. My car is currently so packed out that I can barely fit inside it! I know it will eventually even out and won't feel so overwhelming, but right now I would really appreciate prayer as I take on this new layer of responsibility for Ian's care and finish up the move.

This is a time of transition. It's a good transition, but still there are a lot of changes for everyone to adjust to. Ian has been living the quiet, restful monastery life - rather different from a home full of energetic little ones jumping on his bed and poking his eyes.  I'm trying to give him windows of rest during the day, but it is definitely a challenge. Please pray for a smooth transition for all of us!

I do hope to capture some sweet pictures of Ian and life together at home soon, but for now I will leave you with this lovely snapshot of our car. Yes, I'm horrible at speed packing while sleep deprived in the middle of the night... 

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!