Test results are in-- Erica's liver and kidney counts continue to improve and the HUS seems to be going away. The GVHD is still present, a little worse today, but we have a new topical medication that we will start tomorrow. We will need to cover her in the cream almost every 2 hours, alternating between this new cream and the steroid cream. Labor intensive but worth it, the goal is to keep the oral medication where they are . . . we can't afford to increase them.
This is an interesting period of time. We are done with chemo, the transplant has taken place, over 100 days of healing and still, she is monitored daily for changes, we have weekly doctor visits, twice weekly lab tests and countless medications. So we still take things a day at a time. For instance, we had to run to the pharmacy last night for an antibiotic because her urine test showed signs of infection. This process has a way of keeping you right smack in the moment. When I let go of all the questions, ("what will life be like?", "will I go back to work full time?", "who will watch Erica?", "what if . . .?") and when I remind myself that we are still taking it a day at a time, that is when I feel at peace. Through this journey we have learned, intimately, that God is in control here. So, this is our "normal", ever shifting, ever unfolding. We have become more faithful and therefore more flexible, so . . . we'll see what tomorrow holds.
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6 comments:
Megan,
You must really struggle with the ups and downs. But just think how much easier these ups and downs are compared to the ones just a few months ago. Not that your new "normal" life isn't scary and exciting all at the same time. Just think in 8 months from now you get to take Erica outside to play and you get the have the total enjoyment of showing her all the wonders of the outside world all over again. I can just see her smile now....
I love You,
Kerri
Does anyone else think that Kerri should be come a writer/therapist? She is a hard act to follow here.... :) Meg-this is probably one of my favorite posts from you. What is "normal," afterall? Your normal today is a contrast to what it was 2-3 months ago and is different than what it will be in just another month or two. You sound very calm and your faith has kept you and Bob from choosing fear. I love you and am proud to call you my friend.
Yea! We are so happy that Erica's liver and kidney counts continue to improve. What a little fighter she is! She is so dedicated to getting better and you, Bob and Megan, are so dedicated to getting her better! You are truly blessed to have each other!
Love,
Eric, Heidi, Ethan and Blake
I love Whoopi, "Normal is nothing more than a cycle on your washing machine". Ain't that the truth Meggie? I love you and think you are an extraordinary mommy, I always knew you would be. I worked in the ER on Tuesday, it always enlightens me in some way. I remember thinking, "thank god Erica has parents who are so attentive, dedicated, educated of her disease and loving". I know I am a broken record but you both possess something very special inside that allows you to be outstanding parents. Erica is living proof!
Kel
Meg this post struck me to the chord. It's not until things are out of our control and we need to rely on faith that we understand how important it is to live in the moment. Little Erica and your family have helped me realize that and I say thanks for your friendship and ask for blessing of healing and strength for your family every night. Just think, some day "normal" for Erica will be going to school, hanging out with her friends, debating over what to wear! Fun to visualize.
We love you and have a great weekend.
Ambra, Trim & Reese
It is really hard to read this blog without welling up with tears, but those tears represent so many emotions all at once. Erica's journey is so hard, so difficult and just plain heartbreaking that she has had to endure such health challenges so early in her life. Yet the true story so beautifully conveyed by her loving parents is absolutely inspiring and meaningful to those who are fortunate enough to follow this journey. It is obvious that God is in control, but this is because of your example, your fortitude, your patience, your strength, your courage, love, dedication, Faith and on and on….ultimately I realize that my tears represent real Joy, simply knowing healing is taking place, delight, in reading of your careful attention to Erica and her needs, contentment from hearing that God provides you peace one day at a time, and a strong sense of humility at the awesome task you’ve been given. Thank you for all you continue to do. God Bless you, Erica, Bob and family. We love you.
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