Day 148: Thankful

I am thankful for so many things today.

I'm thankful I haven't had a headache since I posted my last update. It feels truly miraculous...

 Thank you so much for your prayers!

I'm thankful to feel in love with my children again.  I think the daily, throbbing headaches were really getting to me. So thankful to feel like a mom again.

I'm thankful for free tickets to Roaring Camp Railroad given to us this past weekend! 

I'm thankful for a few hours of breaking quarantine to ride on a steam train through the redwoods and play in a little red barn and climb haystacks. 

I'm thankful for the girls getting fresh air and for their little hands digging in the forest floor, even if we did have to scrub ourselves down as soon as we got home before having any contact with Ian...

I'm thankful for their rosy cheeks in the sunshine and Asha's beautiful butterfly face painting:

I'm thankful for friends who joyfully took Asha into their home for a sleepover in the redwoods Monday night. She arrived there ready for more forest adventures with her backyard safari gear!

I'm thankful the cough Ian has had this past week (which keeps me up at night worrying about him) seems better instead of worse this morning.

I'm thankful that Ian is starting to push himself to follow a weekly exercise routine to slowly regain his strength. I love watching him and Asha do the 7-minute workout together!

I'm thankful for a daily practice Ian and I have been developing together, reading various books/blogs/devotionals during Fiona's nap time that are cultivating deeper spiritual conversations and soul connections. 

I'm thankful for a good cry last night. Every once in a while it's necessary to face the reality of what we are going through and expose all the hidden grief and fear and worry, feel the heaviness of it, and let the tears flow. There is an extra measure of grace, strength, and sweetness that seems to come in these moments of raw broken-heartedness. The Lord carries us when we are weakest, and it's a precious place to be in the arms of God.

I'm thankful Ian is still chugging along without complications. 

 We never know what the next day will bring, but I'm so thankful for these precious, ordinary days we are having all together.

And I'm so thankful for all of you - for your love and prayers and support.  We are always so encouraged to hear of friends old and new (and some who we have never met!) who are following our story and praying for us regularly. Amazing...

Thank You!!!

Day 140: Quick Update

Here is a quick update on where we are at:

Ian getting a chemo injection last week

Ian finished his latest round of chemotherapy about a week ago and it has gone pretty smooth so far.  Chemo can have a number of delayed side effects, ranging from low energy and blood counts to a recurrence of liver failure, so continued prayers are appreciated. We aren't sure if it's the chemo or what, but Ian has not felt so well the past few days. His energy has dipped considerably and he vomited yesterday for the first time in a while. Other than that, he has continued to sail along smoothly.

I have been super exhausted myself lately, to be honest. Headaches have been plaguing me daily and I have felt so tiny and tired, while my children keep mysteriously mutating into these enormous, ear-piercingly loud, smothering monsters that strategically challenge my sanity.  It's crazy how a little lack of sleep and low energy can mess with my perception of these precious girls of ours. Asha in particular, as she is intensely social and I have been simultaneously her mother, kindergarten teacher, and primary playmate during these last seven months of quarantine. This has been challenging. I'd appreciate prayer for strength, patience, love, sleep, and sanity!

Because of the chemo, we are now back to biweekly clinic visits on Tuesdays and Fridays. We also found out last Friday that this was the first of four monthly 5-day chemo sessions. I had a feeling this would be the case when the nurse giving him injections laughed out loud when we said it was just one 5-day round of chemo. She said it always comes in several rounds but she would let the doctors break that news to us. So we weren't all that surprised to hear it is actually a four month ordeal.

One day at a time. This is a long road we are traveling. Thank you for still keeping up with us on our journey!

One of Ian's Father's day gifts from Asha :)

A good morning smile from Fiona

Day 129: Chemo Begins

Oh the feelings swirling around in my heart right now.  The latest chimerism results have been bringing up some painful reminders of the reality of high risk leukemia and the odds we are up against, as well as clouds of uncertainty about the future. On our drive here to the clinic, we had one of those difficult but necessary conversations about preparing for the worst.  Living with cancer has ebbs and flows of emotions. Some days it is very real and screaming in your face, other days it's tucked away neatly in the closet and almost forgotten about. Tests and treatments are common triggers to bring the monster out of the closet.

Pardon my language, but chemotherapy really sucks.  Thankfully it is just an injection this time and not hours hooked up to an IV line. The moment that syringe inserted it's contents into Ian's belly, he could feel it hit.  This is a mild dose, but it still has that familiar, loathsome feel of chemotherapy.  It's purpose is to tag all of Ian's blood cells for destruction by his brother's. Please pray its mission is accomplished comprehensively, smoothly and successfully. 

The bright side of these 5 days of chemo is that Ian and I will get a good chunk of time alone together.  Since he has come home, the days have been incredibly full and fast moving.  Sleep is a rare and precious commodity for this busy mama, but somehow the only time alone we can get happens late at night when we should sleeping.  So we are really looking forward to getting some extended daytime together without the kids to catch up. 

You may be wondering how everything came together for childcare during these next 5 days. Let me just say here and now that my parents are amazing.  My dad called a couple days ago to share that his chemo isn't scheduled until after the 21st and they would be more than happy for my mom to fly back to help us during Ian's treatment.  She arrived at 1am this morning, just in time to get some rest before watching the kids for clinic and chemo today. What a massive relief and blessing. It felt like Christmas having her here this morning, we were so excited to have Nana back!

Although there have been some heavier clouds passing overhead lately, overall these past few weeks together as a family have been a profoundly precious time.  Almost dreamy. Having Ian home and being under quarantine has meant that we spend virtually all day every day at home together. No busy schedules to manage, no rushing from here to there, no getting kids in and out of carseats. Lots of meals together around the table.  Although the days seem to pass so quickly, they also feel slow and sweet. I don't know how these two realities exist simultaneously, but they do. 

And I am loving every moment of it.  I love that Ian is experiencing Fiona's development explosion as she says more and more words every day. I love that I can always tell Ian has entered the room by Fiona's huge smile and sparkly eyes in his direction. I love that she has to immediately show off to Ian any new outfit or accessory that makes her feel pretty. I love to see Asha swinging in the hammock with Ian. I love that they sing spontaneous songs together and do drawing lessons and science experiments and watch history detective shows together. I even love going to the clinic visits all together as a family. These are sweet times. A little bittersweet, but still so very precious... 

Day 125: Another Round of Chemo

Well, just as we were starting to feel like things were smoothing out we were hit with some rough news today. The doctor called and said the latest chimerism test showed things moving in the wrong direction: Ian's blood cells are increasing in percentage rather than his brother's. The doctor said he wasn't concerned, but he was bothered.

We aren't sure what to make of this distinction, or what these latest results really mean, but we do know that the next round of chemo begins this Friday. He would have started it already, but they were concerned about his liver being able to handle another dose of chemotherapy. It should be a milder one this time and he will be able to stay home during the 5 days of treatment. We aren't sure what this will look like with daily trips to San Francisco and how to manage it with the kids, but I'm sure everything will fall into place. Taking it one day at a time...

Please pray for us as we walk this out - physically, emotionally, practically. It is a challenge.  Please pray Ian's liver will work like a champ through this round and not be compromised in the slightest. Please pray that Ian's chimerism will reach the necessary goal of 100% donor and he is completely cured. Please pray this is just a tiny blip in the journey and we will soon be smooth sailing out of these scary, stormy waters...

Thank you! 

Day 120: Catching Up

In the past few days, Ian has installed:

•  a zip line with hanging hammock chair across our living room
•  a hammock on our deck
•  a giant kitchen magnet to keep knives out of Fiona's reach

All of this is in addition to fixing the bath plug and sliding door in our bathroom, sharpening all our kitchen knives, giving Asha art lessons, manipulating/studying computer language type systems using abstract algebras, and learning a new computer language called "Go".  Ian is back!

He is still exhausted easily and has to rest for most of the day, but I'm thankful he has had the spark and energy to take on these spontaneous and creative projects.  He is eating a much wider variety of foods here at home and has been able to hold everything down so far.  He may not be exercising as much, but the girls have a way of keeping him pretty active.  It has been so sweet for all of us to have him home and in the middle of our daily life again. Here are a couple pictures I took of him and the girls today:

Now to catch you up on the big picture of where we are at:

Ian's immunosuppressant is being slightly reduced every week. He is now taking less than half of the original dose, and still he hasn't had any adverse symptoms. Thank you Lord!  The goal, assuming no complications,  is for him to be off of immunosuppressants completely within the next month or two. It will take a few months after this for his new immune system to wake up and take charge, so we will still be under quarantine for a while longer.  Ian is hoping to return to work at the beginning of October.  

How strangely wonderful to be getting so close to normal life again!

*****

P. S. Several of you have been asking about my dad. I would really appreciate continued prayer for him as well.  His chemotherapy has been postponed due to some deep skin cancers that were recently discovered. They are in the process of removing these (surgery on the first one required cutting out two inches of his arm) and so he won't be able to begin the lymphoma treatment for at least a couple weeks until these have healed. Oh my heart aches to be with him, to support him, and for him to have the joy of Fiona's smiles and her angelic face asleep in his arms once again as soon as possible... 

Please pray healing for my dad. 

Thank you!

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. 

****

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!