Thursday, September 29, 2011

More of the worst week so far...

When I posted on Saturday I was optomistic that Annabelle would get better quickly. Sunday proved different. She continued to get worse and worse and that night her fever topped out at nearly 106 degrees! She had to be put on oxygen and by that point she was on 3 antibiotics and also an antifungal. Nothing was helping and she was getting worse.

On Monday the anesthesiologist refused to sedate her for radiation. She was so sick he didn't feel comfortable putting her out. I was SO exhausted that the next few days sort of ran together. At some point she also tested positive for rotavirus. So C-diff, rhinovirus and rotavirus combined with neutropenia was pretty well shutting her down. The doctors were re-evaluating her overall treatment plan so there may be some changes coming in the future. The treatment for Ewing's used to call for 3 week cycles of chemo. Now they try to condense it to 2 week cycles because research has shown that that increases the cure rate. But Dr Afify told me one day that it doesn't do any good to try and achieve that number if it kills her in the meantime. You'd have to know Dr Afify to appreciate her saying that. She doesn't sugarcoat it...at all!

Once Annabelle's ANC started to recover she started feeling better. She ended up with another platelet transfusion and blood too to help out. I am happy to say she is MUCH better now. She still has symptoms from the C-diff and rotavirus, which means insane amounts of poop. Not fun. And she is losing her voice from the radiation. She speaks in a whisper to keep it from hurting so it is very difficult to understand her at times. The many hours she spent watching Signing Time are paying off though, and next time we are inpatient we will make her a communication board with pictures she can use to tell us what she wants/needs.

She was discharged today and so happy to get out for a few days! We are staying in SLC for radiation in the morning and then we are off to Tremonton for the weekend. We both can't wait to spend it with Josh and Layla. It's going to be great!

4 comments:

Shannon said...

You get to see Josh and Layla! I'm so excited for you! Sorry this week has been so rough. You and Miss Annabelle sure are amazing and so strong. Give her a hug for me! And I'll come give you one in person soon. I had a sore throat on and off earlier this week and didn't want to share. Love you!

Anonymous said...

Oh Sal! I'm so sorry you girls have had such a bad week, but I'm so glad that you get to spend the weekend with the rest of your fam! Your strength amazes me and makes me so proud of you. Hugs to all of you and have a GREAT weekend. Love, Auntie Penn

Anonymous said...

Oh, I am so glad Annabelle is feel a little better. When I was reading your other post my heart ached for her. I hope you all have a great time with the rest of your family. The Jarrells

Anonymous said...

We love you and our thoughts and prayers are with you daily!! I wish we could sit down there with you and help. Stacey and all