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!