Day 171: Happy Birthday Asha!

Today was Asha's 6th birthday, and it was the happiest one ever. There were lots of sweets and balloons and gifts and surprises, but here was the BEST part of it all:

Ian's chimerism results are in: 100% donor!!! 

This is from the peripheral blood only, not the bone marrow. But it really feels like a miracle, coming on the eve of Asha's birthday especially. For months she has been praying he would be healed by her birthday, or on her birthday. Those were the two choices she offered, God could take his pick. I had been honestly dreading the test results and her birthday, knowing they were likely to overlap and fearing the worst. I guess that is why Jesus told us we need faith like a little child. 

It isn't proof that he is cured (it will take about 5 years being disease-free before the doctors consider him cured) and we still have a long road ahead, but this is definitely wonderful news. His liver function tests have improved significantly also, so we are coming out of the danger zone there as well. Whew!!! 

Ian's doctor is out of the country for a few weeks, but when he is back we will talk more about whether or not to do more chemo. His immunosuppressant was doubled when his liver tests were elevated, and we are not sure when the slow process of reducing them will resume. For now we are holding steady under quarantine and enjoying life together as a family. 

Ian has an appointment next Friday to have the central line taken out of his chest, and I am counting the days! I don't mind flushing each of the three lumens daily with saline and heparin, but the waves of infections and the whole business of a tube coming out of his chest has been really disturbing for me. So thankful to have this part of the journey come to an end soon.

Good news all around. 

So thankful. 

Thank you for your love and prayers! 

Day 164: The Latest

So here's the latest news:

• All of Ian's liver counts have gone up since last week. Not significantly, but we were hoping they would continue to go down instead of back up. Definitely no chemo this week. Even so, we are deeply grateful for those who quickly responded and volunteered to take Ian if we had needed it. Please pray for his liver to heal from whatever is causing these elevated LFT's.

• Ian now has what looks like an infection in his central line, so we spent the afternoon today sitting in the infusion room getting IV antibiotics instead of chemotherapy.  He began an extra two week round of oral antibiotics tonight as well. Hopefully we are catching it early. Seeing the tube coming out of his chest makes me quiver enough as it is, but the redness and oozing and high probability of infection really makes my skin crawl and heart ache.  They are considering taking the central line out of his chest completely this next week since he is no longer taking IV medications regularly. Please pray the infection clears up quickly and completely and does not spread any further.  

Thank you!

Day 161: Quick Update

Here is a super quick update:

•  Ian's liver test counts have come down a bit. His doctor is still unsure if the cause is GVHD or toxicity from the chemotherapy, since the timing of everything lines up perfectly for both. They have postponed his chemo treatment, just in case. If his liver function tests are back to normal or close to normal this Friday, then they will begin round two of chemo then.  
• They pulled blood for a new chimerism test last week, and we should have results by the end of the month.  These results show cancer markers for leukemia as well as the donor/host percentage in his blood.  It's always a little harrowing waiting for this kind of news, so I'm trying not to think about it. 
• They dropped the second clinic day so we are back to just Fridays!  Huge relief, especially since Asha has just started to get car sick on these longer drives. By the way, if any of you are available to drive Ian to the clinic in San Francisco for one of his chemotherapy appointments so I could stay home with the girls, this would be a huge blessing.  The chemo schedule is Friday - Tuesday, once a month, but actual appointment times vary. Next week (if they decide to do it) Monday is still open for healthy volunteers who haven't been knowingly exposed to anyone sick in the past two weeks.  Please contact us personally if you are interested in helping out in this way.

Thank you!

Day 150: Clinic Day Prayers

I feel pretty toasted after a very long clinic day, but I also know how valuable your prayers are so I wanted to post a quick update:

At the forefront of concern is news that Ian's liver function tests (LFT's) are elevated significantly. His doctor seems more concerned that it is GVHD than the SOS returning, so he doubled Ian's immunosuppressant to see if that helps. It's tricky to know the cause, since his chemo can also cause elevated LFT's. He is scheduled to begin the next round this coming Friday, but they may push it back if his levels are still elevated. 

Statistically, doing this chemo treatment gives a greater cure rate so it is pretty important. It may not be worth the risk of another liver failure, however.  If the issue is GVHD, it could possibly mean immunosuppressants the rest of his life. It could also lend a greater chance of cure, however. This is because as the graft is fighting his liver, it may also be fighting the leukemia as well. I feel dizzy following all the rabbit trails of possibilities, so I'll leave it at that. I just pray that by whatever means necessary the end result is that he is cured.

Another item for prayer is his lungs.  He has had a pretty bad cough for the past week and a half, and there was a lot of crackling when they listened to his lungs today. They did a chest X-ray and it came out clear, no pneumonia, so they just put him on antibiotics. Please pray his cough and lungs clear up quickly and completely.  

Thank you!

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...