Tuesday, May 17, 2011

Tackling Phase 1

We've spent several hours @ Hemoc today. Mireya was scheduled to get routine counts done. Over the last day or so, her level of petechiae and bruising has increased. Her counts came back excessively low across the board. The decision was made to give her both a blood and platelet transfusion. Her system needed to be re-fueled. Her energy levels have been low at times, her coloring is off and her heart rate was slightly elevated due to her heart having to work extra hard to pump the decreased number of red blood cells to produce oxygen. Today we were taken to the 'Fishbowl'. This is the area where kids come to get stuck, recover from treatment and/or receive meds intravenously. She wasn't happy at getting stuck AGAIN (in her voice). One of her veins blew out, which was quite a struggle for me, and unfortunately required a second stick. Some of Reya's preliminary test came back negative, but due to her counts, the decision was made to start the low level steroid to see if we can maintain her levels or get a positive response from her body.

Overall Mireya was in good spirits. It has been a long, exhausting day. I felt like I should have collected a paycheck when I left. We'll go back on Friday to retest counts and see how her body is responding to the medication. Today was tough. I was so grieved. It took everything within me not to full out cry while there, even still a few tears streamed down my face as I observed so many children in varying stages of cancer and treatment. Of course I wish I had thought to have a conversation with Mireya about why some of the kids wore masks or had no hair before curiosity got the best of her as she blurted out her 'why's' in a waiting room full of people. Well at least we now have that covered.

Meet the Hemockers! This appears to be a very close knit community of people. We met a young lady today recently diagnosed with hodgkin's lymphoma. It was very informative speaking with her and her Mom. They knew a lot about many of the kids and families dealing with autoimmune and oncology diagnoses, including the current case of Aplastic Anemia. They gave us the low down on appointment times to shoot for, parking, places to eat and things to do while working through what could become a long process of diagnosis and treatment. Last week it was medical information overload. This week for me it's been emotional overload. We left the hospital and I came home, put on my pajamas, jumped in the bed and just cried all the tears I wanted to shed throughout the day . I'm thankful that my husband is there to carry the load and comfort me when I'm feeling to weak to rise to the occasion. God knows all things and he remains in control. I don't doubt that for one moment. Today we were disappointed that the counts decreased, but we remain encouraged. We're moving closer to understanding what this is and getting Mireya better. She's feeling better already. Her complexion is fresh and lively, and her energy and appetite have increased. We're believing these next few weeks of steroid treatment will bring forth favorable results and that she will not have to deal with the many side effects of these drugs. Even at a low dose, these meds are hard on the system. Please also pray for me, physically I'm not feeling my best. I'm hoping I didn't pick up anything while at the hospital. More to come later this week. Prayer changes things and I thank you for your continued prayers for Mireya.

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