Another chemo hold. Another flu?

The past week has been mentally and emotionally draining, and to be honest I don't think Mike and I have felt this stressed since 2016. While things have calmed down, we still don't feel like we have all of the answers. It was difficult to talk about everything going on with Ellie, and while it is still tiring, I wanted to update everyone about what has been happening. 

Ellie went in to the hospital last Tuesday for her lumbar puncture and port accessed chemo. While at her clinic visit before the procedures her doctor told us that she wanted to also perform a bone marrow aspiration on Ellie. This test would be able to give the doctors insight into what was going on with Ellie's body. This caused a lot of anxiety because this test is also used to determine of there is (a relapse of) leukemia. Ellie has not had this test done since April 2016 when she was first diagnosed. The preliminary results were good: no signs of leukemia. This was a relief to hear, but we were still worried until we received the full and final results on Friday and today: no leukemia.

In addition to the stress of this test, Ellie's last viral panel from her previous ER visit came back negative. On one hand that is great news because that means no flu! But, on the other hand, we have no source for her most recent fevers, and that is extremely concerning.

 

Her nurses always make sure Diddy and Lamby are waiting for her when she wakes up.

Like I have said before, we firmly believe that Ellie will be fine, but what else will she have to go through until she reaches that point? We hope for the best, but this past week it felt like we were preparing for the worst. Still, we are thankful that God has continued to allow Ellie's body to heal. 

At the hospital that day it was determined that Ellie's daily and weekly chemo doses would be greatly reduced. She was at 125% dosage and that was dropped to 50%. It is clear that Ellie's body is no longer tolerating the chemo, so we were hopeful that this would help.

After coming home from a long day at the hospital, Ellie spiked another fever late that afternoon. Sigh. I can't make this up. By the grace of God, with some quick efforts to cool off Ellie's body, the fever gradually went away. Ellie remained fever free all week, but still, you could tell she was miserable. The double dose of chemo, plus steroids, plus the bone marrow aspiration in her hip made her extremely tired and sore all week. 

Her lambs are ALWAYS with her.

Another side effect of the steroids is nervous picking. During steroids weeks Ellie is constantly picking at her lambs (some areas are threadbare), her clothes or herself (lips and fingers).

So, Ellie went for a long time without a fever...until today. Another fever spike, another unexpected hospital visit. More tests and hopefully some answers. Although Ellie's previous tests showed no signs of the flu, today she is extremely congested, so the flu may be back. As of writing this post, we are still waiting on all test results from today. One current thought is that perhaps Ellie has mono. That certainly would help to explain a lot. 

Ellie's ANC was fine so she was able to leave the hospital after a couple of hours. But, her platelets have dropped again, down to 35, so she is on yet another chemo hold. We are home and that is always better than being at the hospital, but the past few weeks have certainly taken their toll on Ellie. She can tell when I'm getting ready to go to the hospital, and every recent time, she has started crying. This little girl is done.

Please continue to pray for Ellie's complete and permanent healing. Thank you for continuing to come alongside our family during this time.

Update: As I was about to hit "Publish", we found out that Ellie does have a cold, but not the flu.