I cant believe it has been 6 days since we last updated! So much has happened... An unexpected surgery and now Margo is back in the PICU. Before I explain all of that, we must tell you how thankful we are for YOU! As we celebrate Thanksgiving, we give thanks for having so many prayer warriors... thousands of people putting daily love and light out to Margo and our family! We KNOW that makes a difference. The fact is, we try to live a life of thanks daily. With Margos original diagnosis over 2 years ago, we began nightly prayers of thankfulness. Of course, we sneak in a few requests when we are feeling a little broken or bruised... asking simply for strength and peace as we remember He is in charge. But mostly we just THANK God every day for healing Margo... and giving her courage and strength. We pray nightly thanks for this beautiful day (even when its not), for our family, our doctors, nurses, medicine, scientists, donors to childhood cancer research, and of course things like macaroni-n-cheese, puppies and Princesses. We always, every day, ask God to bless all the people praying for us. One day, a nun visited and when she was leaving our hospital room, she said she would be praying for Margo. Margo replied we will pray for you too, and the nun welled-up with tears and a huge smile in amazement of Margos spirit. Unforgettable moment. So clearly you can tell Im over flowing with gratitude! Now onto Margos status... Wednesday at 2am Margo woke-up suddenly because her nightgown was wet all down the front. The nurse was simply flushing her central line after a med, but somehow Margos central line had become pulled out! Oddly, there was no blood even though the stitches were pulled. The nurse redressed what little was hanging out, then they needed to get two IVs in her (after 4 pokes) so her meds could continue and she could still get her last dose of Moxe in a few hours. Later that morning her 6th dose of the trial drug Moxe infused without issue. That was the last dose of this first cycle. Some promising news is we started seeing small signs of tumor lysis... AND her white blood cell count is staying down! All good indicators that its working! We check her bone marrow in 3 days to confirm! Shell then start a second cycle of Moxe on Friday 12/5 (6 more doses over 2 weeks). Thanksgiving was special... We had Max and daddy with us! They of course helped brighten every day! Friday was the surgery to replace her central line... which is her 6th line. She bounced back from that fine, but Friday night into Saturday her blood pressure was uncontrollably high. It has been high for a couple months because of the strain on her kidneys (due to all the antibiotics, antifungals, antivirals and leukemia), so she is already on 4 different BP meds daily. By 4am Saturday morning it was so high after taking all meds and rescues that they sent us to the PICU. There they started closer monitoring and added a 5th med to get it regulated. We are not sure how long we will be in PICU... Margos BP is still toggling to some upper high numbers throughout the day. Overall Margo is feeling pretty well when she is up, but sleeping more than usual. She unfortunately does still get that horrible, on/off again pain (mostly her right leg) which never gets easier to witness. Oh, and shes still not eating much even though she is on steroids, so her feeds are back to running 24 hours. But her eye infection is better! See, theres something ELSE to be thankful for! And thats how we put Thanksgiving in every day... we have to. Focus on gratefulness.
Posted on: Mon, 01 Dec 2014 00:04:09 +0000
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