A long, long, long road

I've been wanting to update you all for a while now, but life has been full and my energy has been super low. I'm thankful to say Ian's liver has held up and he's been doing great, eating well and staying strong. The three flights of stairs to get into our home is a good built-in work out, and he's been walking our neighborhood a bit too. So much better than being confined to a hospital room! 

The girls came back from Sacramento Thursday, but Fiona became full power sick with a snotty, bubbly nose in addition to her horrible cough so she was quickly moved to my mom's house until she recovers. I took her out for a date the other day and was giving her options of places to eat, but she only wanted to eat all together as a family at our table at home :(  

Asha, on the other hand, has been enjoying being the only child again and is getting really good at beating us at the Monopoly card game :)

Now for the latest news. On the bright side, Ian's biopsy showed 99% donor so we are making good progress. The rough news is that the research paper Ian's doctor is basing his current treatment on  used 16 rounds of chemo as the basis of their trial. This means possibly 15 more rounds to go, each about a month long. Almost a year and a half of chemo, with all the quarantine and vulnerability and toxic laundry and daily commutes to San Francisco that go with it. Ian laughed, I cried.

We will meet with Ian's doctor on Tuesday and see what his plan is. Please pray wisdom for his doctor as he makes this decision. A year and a half of chemo feels daunting, but if that's what is required to banish the leukemia it is totally worth it. 

This news has caused us to re-think how to approach this next season. Should we move to San Francisco, walking distance to UCSF? Should we look for a place with two separate living spaces so we can quarantine a sick kiddo inside the house instead of moving them to another home? Maybe take a mini road trip/vacation/camping trip between rounds of chemo? We will have about a week break between each, and it would be nice to have something fun to look forward to if Ian's strength holds. Please pray for us as we strategize how to make this next season sustainable as a family. 

Also, please pray for my energy level as I've been highly fatigued the past few weeks no matter how much sleep I get. I have so much responsibility right now and really need extra energy to keep up with it all. 

Thank you!

Prayer for Ian's Liver

This is just a quick request for prayer for Ian's liver. He is on day three of chemo and they were hesitant to give it today due to elevated liver function tests. His doctor decided to go ahead, but please do pray protection for Ian's liver as he has five more days of treatment scheduled. He really needs this chemo to destroy the disease, but his liver needs to be healthy enough to handle it. Please pray no complications and a smooth road through this. Thanks!

The Plan

Biopsy results came in today. There's about 5% leukemia still in his bone marrow according to the preliminary report. His doctor referred to it as "a touch of leukemia." That is down from over 60% before the last treatment, so I like to see it as good progress. Next round starts tomorrow (Wednesday) at 8am and goes for 7 days, outpatient. 

Here is our plan. For the next two days, the girls and I will drop Ian off for treatment and find some lovely piece of nature to frolic in until time to pick him up. Next, I will drive the girls up to Sacramento on Friday for a five night slumber party until the daily trips for chemo are done. The girls are so excited for another visit. So thankful for our amazing friends up there! 

We hope to ride this one out together as a family as much as possible. We've had a really sweet season of connecting, which I am so thankful for, but it makes it all the harder to face the fact that everything is going to change again. Ian is looking and feeling so strong these past few days. I wish we could press pause and just enjoy feeling normal for a bit. But we can't. So we will move on, one step at a time. 

A couple complications: Fiona now has the mystery cough that Asha had. No other symptoms of sickness at all. It's quite unsettling, though. We are trying to teach her to cough into her sleeve or leave the room to avoid spreading germs, and Ian will wear a mask when we're in the car together. Please pray he doesn't catch this. It's the last thing he needs during chemo. He should probably be keeping much more distance, but it is just so hard to gaze into her sweet little cherub face and not take her hand and cuddle up with her. The other day Fiona said, "I miss Abba already." I asked what she meant, and she said she really missed him when he was in the hospital. Please pray there are no more fevers so he can stay home and we can all be together through this. 

Complication #2: Termites. Ick. Our bedroom has recently exploded with flying, pooping, breeding, disgusting termites. Ian killed 70 of them in our bed last night when we returned after a weekend house-sitting getaway. Someone is coming to check it out Saturday, and Ian has taped up the holes they were coming out of, so there's a temporary fix and deliverance on the horizon. It sure doesn't feel very sanitary for Ian during chemo, however :/ 

So that's where we're at. One day at a time. I will be wearing a lot of hats this next month with Ian doing treatment at home and Asha starting third grade in a couple weeks. Please pray for daily moments of deep Centering for me, so that I can serve my family from the rich resources of Divine love, strength and wisdom and not be overwhelmed or worn thin. 

Both Ian and I have felt the Lord's hand shaping and training us, working deeply in our hearts through this persistent furnace. It hasn't been easy, that's for sure, but we are finding Jesus in our midst. We are praying to not only make it through this unscathed, but also transformed. One day at a time...

More Chemo Ahead

We went to the clinic last Friday with hopes of getting Ian's pic line removed and dreamy visions of traveling around re-connecting with friends and family. Sadly, instead we were informed that he has at least one more round of chemo to start next week so best to leave the pic line in. That was a sad day.

Ian has a bone marrow biopsy around noon tomorrow and the preliminary results from that will determine his regiment of treatment. His doctor is thinking another round of clofarabine and cyterabine similar to last month but a little lighter dose and subcutaneous so that he can be outpatient during the chemo. All is yet to be determined though, depending on biopsy results. 

There are advantages and disadvantages to him being home for treatment. On the positive side, our family can stay together and Ian will have the familiar comforts of home. He lost around 20 pounds in the hospital last month, so it would be helpful for me to be able to cook for him rather than living off the same nauseating hospital menu. On the other hand, it will also mean more super strict quarantine and vulnerability to fungal/viral/bacterial infections from exposure to things at home. Take a look at this article and you will see what I mean. Here's a lovely petri dish grown from the handprint of an eight year old: 

Besides the obvious germs to avoid, everyday things like soil in house plants and vacuuming or baking with yeast can lead to fatal infections when he's neutropenic. It's quite overwhelming and OCD inducing. His nurse/pharmacist (me) would also be a full time mom, which can be a lot of responsibility for one person. So there are blessings and complications either way. 

Please pray divine wisdom for the doctors as they decide these next steps. Please pray they get a good sample in the biopsy tomorrow and Ian is found to be in full remission. Although even with the best results he would still need more chemo, oh what a blessed relief that would be! We really aren't looking forward to more chemo, but we also understand the deadly monster that AML is and the need to be aggressive to save Ian's life. 

In the mean time, we are enjoying our days together filled with family meals and cuddles, watching the girls ride their bikes around and around the parking lot, sipping homemade Thai coconut shakes, and smashing Asha's birthday geodes :)