Easter Afternoon

Last night was pretty long. Not scary or all that bad, just extremely punctuated by bathroom emergencies every hour or so. Beccas systems are pretty out of whack from all the antibiotics and other pharmaceuticals, so she does not have a great deal of control. In the early morning she also complained of her butt hurting, which we translated into, "I'm having some hip pain... would you please make it go away at your earliest convenience?" Becca asked Trisha why grown ups don't get sick and why God and Jesus want her to be sick, which made us choke back a few tears. Easter morning she was alert and fever free and played with a few toys; we were hopeful that she would be interested and awake when Lily came to visit. But as luck would have it, shortly after Lily arrived, Becca had to take a pretty nasty oral med and puked it back up. Lily is quite uncomfortable in the hospital setting and seeing her sis so lethargic and connected to machines is upsetting. We are struggling with how to balance the unease vs. separation. It won't be long until Lily has no option of visiting at all once the hard chemo begins. On the clinical front, there is not much to report. She has been receiving platelets, but her last transfusion yesterday afternoon did not show any increase at all in the overnight lab work. The Docs thought this could be due to her body actually using them or she may have just recieved a bad donor batch and her body destroyed them. They did not seem to be all that worried about it. She is currently getting a dose of IVIG (immune gobulin) that should help her compromised systems fight off an infection if there actually is one. Some are considering that all of her syptoms of infection may just be from the leukemia itself and we are treating a phantom infection. Be that as it may, we need to continue to treat until we begin the chemo early this week. The iPads continue to be a hit. I emailed Apple to let them know how we are using them; I can't imagine we are the first, but I supposed it could not hurt. I thought it might even be cool for Lily to take hers into Becca's classroom so she could say hi to her pals after spring break. Right now we have a rough plan on how we are going to proceed into summer. Trisha is paying the price of being stable and reliable in her career and will be going back to work this week. She is the source of our insurance and has the most to lose with regard to her tenure and retirement. I will be taking an extended leave of absence from my job at Shaker Run Golf Club. The owners and senior managment have been very understanding and supportive of this situation, as have the members that I have been fortunate enough to come to know well. It is a very odd feeling to say that I hope and pray that we are allowed to fight all the way through transplant, and I am out of work for some time. We are not ready to lose her. E

1 comment:

Renee and Jon said...

Sending all of you love and hugs. You and Trisha are amazing parents and a great team together. I left yesterday feeling so inspired by you both! I know that God doesn't cause these things, but it's hard to see why they are allowed to happen at all. I pray that you continue to feel His love and faithfulness, even in such circumstances.
Love, Renee