Preliminary Results

Yesterday, we found out that preliminary results of Ava's PET scan on Wednesday seem to indicate the presence of small, new chloromas. There's a possibility of a new lesion on Ava's head as well. Ava also had a bone marrow biopsy taken yesterday, so we are waiting for those results.

Just to recap/clarify: as you know, leukemia affects the bone marrow and blood-forming tissues. Chloromas are masses of leukemic cells that form outside the bone marrow. They are more difficult to treat because they aren't easily targeted/reached by the chemotherapy and treatments that target the bone marrow. This is also true for leukemia cutis, which manifests in the skin, apart from blood circulation.

While Ava's first transplant appeared to go well, leukemia cutis started manifesting on her skin all over her body, even before any such indication appeared in her marrow. Chloromas were discovered within her body as well, revealing the cancer's activity outside her bone marrow. The bone marrow biopsies eventually revealed an increase in disease level.

This last round of chemo in Seattle was an attempt to get the disease into remission (even the leukemia cutis, though it is more challenging to treat), so that Ava would be in position for a second transplant. With a second transplant, the hope is that there might be slightly more graft-vs-host effect, resulting in the new bone marrow to more effectively kill off any lingering leukemic cells. Of course this is a fine line, since too much graft-vs-host activity is undesirable and dangerous.

While it was encouraging that Ava's leukemia cutis lesions decreased quite remarkably after chemo in Seattle, it was evident that cancer still remained, which isn't optimal going into transplant. Moreover, there was strong recommendation that Ava get radiation treatment prior to transplant (to target the skin lesions), to help improve her prognosis after a second transplant. The downside to radiation treatment is that the treatment period allows a window of time where Ava isn't receiving chemotherapy, allowing more time for the cancer to grow. There was some discussion of Ava getting chemo and radiation concurrently, but that isn't common practice (and no one was really sure if this was feasible/optimal), and this isn't what ended up happening in the end. Ava finished a round of chemo here in Chicago, and is supposed to get radiation, but for some reason she still hasn't started radiation. The recent PET scan and bone marrow biopsy are to assess the current state of her leukemia, but we are still waiting for results and a more definitive understanding of what her PET scan actually shows. Meanwhile, no chemo means that the cancer has opportunity to grow.

Ava has been complaining of much more pain lately, in her shoulder and in her chest. We are unclear as to what the next steps are, and it seems that we won't hear much before Monday.

Thank you for your faithful prayers. Please pray:

• for wisdom regarding Ava's treatment
• for peace for the Lee family through each step & decision
• for good communication among the healthcare providers involved as well as with the family
• for peace for Ava, as she's had more fear lately, especially with what she's been experiencing physically.
• for God's presence to be known and felt, and for His name to be glorified

Your prayers are coveted and appreciated. Please feel free to pray in any and all other ways you feel led. Thank you for standing with the Lee family.