Wednesday, August 31, 2011

update on step improvements

i've always loved the signs that say "you are here" and let me know where i need to go or remind me where i don't. just the other day, i helped an elderly couple who had gotten lost while leaving the simon cancer center in indianapolis. i saw one of the signs and pointed it out to them. "we are here" , i told them. immediately, i saw a look of relief on their faces. they had been lost, but now had a better sense of direction. another one of my fave signs is in chicago. i have seen it many a windy day there. "you are here" and it always lets me know which way on michigan will make me the happiest=). probably, my most favorite "you are here" sign is on nantucket. "you are here", i read one summer day. i found out just how far i was from france, new york city, martha's vineyard, and some other fun places. when i saw the sign in the hospital....."you are here" , i was reminded of melissa's situation and where we're at with it. if we could make one of those signs, i imagine it would of course, tell us first where we are presently. i think it would also show where we've been, and more than anything, i hope it would show where we want to be.

many of you have called, emailed, messaged, written for an update on melissa. i will do my best to catch you up. first of all, she has come a long way!!! and, at the same time, she is still a very sick young woman.

a week before last her blood gasses were dangerously high, doug was faced with the decision that she might need to be intubated. i say doug was faced with the decision as melissa was pretty much out of it at this point. she was not in a coma, but was not alert and was extremely confused. i didn't realize(thankfully) at the time how serious being put on a ventilator would be for her. bascially, for one in her condition, going on the vent would most likely mean never being able to come off the vent. bless doug's heart as he was faced with "living will" type decisions. i only tell you this to let you know where we've been and how far we've come.

it was during this decision making time melissa out of nowhere became very alert. she told doug and their pastor/friend that she wanted to pray. i think it was assumed that one of them would pray for melissa. but, no, doug said melissa prayed the most beautiful prayer he had ever heard in his life. she did so eloquently and with complete clarity of mind. she asked for wisdom and guidance for her and doug, along with the medical team. AMAZING!!!

the following week(just last week), we began to see less confusion and clearer thinking on her part. i was able to take off work and spent all last week with her in the hospital. while she was more alert, she was still so terribly weak. she has been basically bedridden for 5 weeks, with trips to the bedside commode completely wearing her out.

jenn and i count it our privlege and honor to spend any time with her we can. however, it is heartbreaking to see her so weak and frail. due to her limited breathing/lung volume, she is very short of breath, making it harder for her to talk. i would save my tears for the elevator or times when she was asleep. i would rub her legs and feet and just pray that there would be some way that i could draw the suffering from her into myself. being with her is always a blessing though. through it all, she has kept that same sweet, beautiful smile and i have yet to hear her complain.

so.....where she is now.....doug said that she is making baby step improvements and that is just fine with us!!! any step, however small, in the right direction is a beautiful thing. she is still battling the asprygillis. i learned long ago to NEVER google anything regarding her illness. it can be overwhelming and discouraging. however, if you were to look at asprygillis occuring within a stem cell transplant recipient, the odds are a bit daunting. but we don't go by the odds, we are standing on faith!!!

her medical team feels that the asprygillis is responding to the antifungal antibiotics, not so much that it has decreased but that it has not spread. she is able to sit up in a bedside chair for up to thirty minutes at a time. she has currently been fever free for forty-eight hours.

i asked doug ways that you can pray and he said, "perseverance to push herself, allowing her to gain strength, not to feel overwhelmed, but peace instead, and for the treatment to continue to be effective." she has struggled more recently with anxiety. i am sure some of it is due to the difficulty in her breathing. the anxiety is heavier at night and causes her to not sleep. if you ever wake in the night and think of her, say a prayer that she will rest well. please pray that her lung volume/capacity will increase and that her blood gasses will stay at the appropriate levels.

while we still have a long way to go, wow, we have come so far!!! i want to thank so many for their cards, phone calls, prepared food, messages, home visits, watching the kids, and oh, so many pastors for calling on us and being available all hours of the day and night. most importantly, we thank you for your love and prayers. it carries us through.

continue to remember doug, who deserves to be husband of the year, caleb, lauren, and little audrey. melissa longs to be home with them and cannot wait for that reunion.

you really get to know just about everybody in the bone marrow unit. it really has a sense of family. i like that. we come and go. we're recognized and we recognize others. the other morning, as i was scrubbing in before entering her room, i saw a new face. it was a precious cleaning lady. she said, "you have got be her sister." with pride, i told her that i was. she then said, " i bet you're the older sister. i can tell by the way you care for her." well, any pride i had about my age and who looks the youngest among us sisters went out the window!!! i said, "yes, i am. i am the oldest and i always will be." i could not have been more proud to be melissa's or jenn's big sister at that moment. i walked into her room with an extra pep in my step, ready to be what she needed from me that day. i love you, little miss!!! your big sister wants you home!!!

"it is through adversity that we come to know god, his promises, his else can we take joy in tribulations? knowing this, he is there with the midst of the fire...holding us in his dance and singing over us." i love zephaniah 3:17 !!!


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