He had a follow up appointment on Monday for blood work and a check up. They again found him to be in relatively good shape--counts are good and he generally looks good. Unfortunatly that afternoon we got a call saying a blood culture from last week had turned positive after 96 hours from one side of his central line. Since it took so long to grow, they aren't sure he really has an infection, and since his counts are up, they just wanted more blood for cultures and to give him a pre-emptive dose of antibiotics in Rochester. So we all 4 went back over to the St Mary's ER on Monday night so that all could be done. So far nothing has grown on the new cultures, and Drew is still fever-free and acting fine. They want us to keep monitoring him closely for fever or other signs of infection, and we'll wait and see if any of the new cultures turn positive. Please pray that they don't!!
Next Monday is really weighing on me. Josh and I feel like we want to be prepared for whatever news we receive, and have had several discussions on where we both are at in different scenarios. They have been very hard discussions. The "what ifs" are really scary, but it's good to be on the same page, so we can go into Monday together, whatever the news is. Please keep praying for the tumor to have shrunk or even stayed the same size, then there would be no decisions to make and we'd just continue on this trial!
Personally, I have struggled this week with so many emotions. I want so badly for good news on Monday it hurts. As dramatic as that sounds. I really have a stomach ache thinking about it. There have really only been a couple times--surgery day, and when he had that infection the last transplant--that I've felt like this. It is humbling to be reminded just how out of control we really are. All we can do is pray and ask with all our might that God will have mercy on us and work a miracle in Drew. Please keep doing so with us!
At the checkup on Monday they changed the dressing on his central line, a weekly task, and he was also due to have his feeding tube replaced and switch nostrils. Drew wasn't feeling very well to begin with, and these chores are obviously not fun in the first place. But we've always been pretty good about not letting the little things get to us, and doing what needs to be done. An attitude we've passed on to Drew, which has worked so well for us this year. But I'm starting to crack. The way he looked up to me before they started the dressing change, and then the feeding tube replacement--his eyes filled with tears that seemed to plead, "please, don't do this today!" really got to me. Its so sad what he has to go through, what he just goes along with even when he clearly doesn't want to. He's so trusting of us, so willing to do what we ask despite how he feels. Why does so much have to be asked of this little boy, and how can we ask anything more of him?? I'm not sure I can. I hope with all my heart we don't have to.
That afternoon as I broke down thinking about all of this, it hit me. Maybe God showed me. That is how we probably look to Him. Eyes filled with tears, pleading to not do this to us. He is the loving parent to us, watching as much as it kills Him, but allowing things that He knows are for our own good. I need to trust him, and chose to willingly go along where He leads despite how I feel. I need to be more like Drew, who makes it look so easy. He is such an amazing little boy who God has used to teach me so much. I wish I was as strong as Drew is!
Please, keep praying for Monday's scan. Pray this treatment is working and we can continue on the study. Pray for our hearts this week, and for Drew to continue to feel better after his last treatment.
~Heidi
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