It's been a long time since I've posted--sorry about that! We've had a really busy several weeks, with a lot of traveling, but now we're home, unpacked, and back to our new normal life. It's wonderful! Henry and Edward are doing a lot of playing with trains and blocks inside and rocks and dirt outside, Kameron is very busy with our Keys of Revelation seminars at Muskegon, and I'm getting the house back to normal and have a new artisan bread-baking hobby![...]

It's hard to believe all this has been going on for less than four months. It feels like much longer!

It's been a good couple of weeks for Edward. He turned 20 months old. He had a wonderful IVIg infusion on Monday (6/2), where he smiled and laughed at all the staff, ate well, and then slept through most of his treatment. He had a good visit with his speech and occupational therapists from Early On on Tuesday (6/3). And some of you sent him not one, but two of his favorite chairs! Thank you so much! We'll use them both and we are so grateful. [...]

Just a quick post tonight to let you know the wonderful news that Edward's scan showed no sign of cancer! No one expected the cancer to have grown or spread, but we all expected there to be some residual, because Dr. Robertson hadn't been able to get it all when he did the surgery back in March. This is better than anyone expected! Furthermore, the excess fluid from the chylothorax (and subsequent chest tube fiascos) back in March is completely gone![...]

[Mon, May 19: Edward sleeps in the Pack 'n Play while the IVIg is infusing.][...]

[Thurs, May 8: Early On staff evaluate Edward in the comfort of the living room][...]

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The sun has gone down here in our corner of Michigan. As we welcome the Sabbath, we wanted to post a quick update. 

Edward's rituximab infusion last night was flawless. His vitals stayed normal the whole time, and he slept through the entire thing. His tremor was worse today--he couldn't sit up without rocking wildly back and forth--but that's the trajectory it was on, and we don't expect to see improvement from the rituximab for several days. Also, this was only the first of four infusions he will get; one each Thursday for the next three weeks.[...]

We called the clinic yesterday and described Edward's worsening symptoms--increased opsoclonus and myoclonus, increased fussiness, sleeping less, and not wanting to be put down. They squeezed us in this afternoon at 1:00, and we had a long discussion with Dr. Mitchell. We love her! She had talked with her colleagues, and they had agreed it would be best for us to start rituximab. It's a monoclonal antibody with a complicated mechanism of action that I don't fully understand, but I gather that it wipes out B cells, which is where the antibodies that are attacking Edward's brain are being made. Wipe out the B cells, wipe out the attack. [...]

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We had an appointment with Edward's HemOnc (hematology/oncology) team Thursday morning. Edward got to show them his regained abilities (sitting up, cruising, smiling), and we got to talk to them about the plan of attack from here on out. Here are the main points...[...]