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!