Miss Erica

She is amazing. Is it ok that I say that? She is feeling better everyday, she tells us so. We are so proud of her . . . I just want to share a few things about Erica.
Right now is a time when we are reliving all of her "firsts". She is pushing her scooter and pulling herself to stand, she is trying to balance on her own and she is saying new words . . . again.
The meds have held steady for the past couple of weeks as her skin continues to improve. She likes having the cream rubbed onto her skin and she still takes her "buggies" without a second thought. She doesn't miss a thing and we are amazed everyday with her progress and her spirit. She is super funny and very loving. If either of us tells her that we are tired, she'll go get her doggy and give him to us. (Of course if your tired, you must need Doggy). Being at home with her is going really well and we have the help of my mom and our new friend, Lindsay.
Thank you for your continued prayers.

The Faith Fairy

Who is the Faith Fairy?

For well over a year now, we have been visited by The Faith Fairy, every other month or so. We will come home or go out for the mail, and there it is, a package on the driveway. Every package has a theme, depending on the month, and in the bag is a poem about how The Fairy came to visit, with full understanding of how we are all doing (based on the latest blog), and constant reminders that God is with us. There is always a little gift for Erica and then a couple of items for Bob and I. The poem is fun and compassionate and we are always left saying. "Who is The Faith Fairy?"

Faith Fairy, we understand if you chose to stay anonymous, but we wanted you to know that we are very grateful for your creativity and generosity. Erica loves the new Elephant Game and we have been saving all of the poems to share with her one day.
~~~~~
Do you know how GOOD people are? I have said, many times, along this journey, that we have seen the good in people and we have seen the ways in which God works through people. Today I received a gift certificate from someone I've only met once, she is a member of our church. Last week we received a donation and letter from the grandmother of a little boy who finished his chemotherapy last year. My point is that these are people that have only been brought into our lives because of what Erica has endured and they have been moved to reach out to us. Ill admit, it is overwhelming at times, my automatic reaction is, "how can we return the favor? how do we give back?" And then I remember the whole "Pay it Forward" approach. When Erica is better, we will have a whole new appreciation for ways in which one person or one family can make a difference in the life or lives of others. The true intention of giving is realized through simple acts of kindness. We could be someone else's Faith Fairy.

I sit here and hope that this message is not misconstrued . . . I just want to say Thank You, to everyone who has reached out to us. You have made a difference in our lives and you have touched our hearts and you have renewed our spirits. Most of all, we will do things differently in the future because you have shown us what it means to give . . . from the heart.

We are so blessed, I sit here in tears. Did Erica know that she would have this kind of impact? . . . sometimes I look at her and I swear the answer to that question could be, "yes, indeed she did."

(issues with Kodak Easy Share . . . working on the photos . . .)

Could it be?

The phone rang this morning and it was Kay, she had our chemistry results from yesterday. The first thing she said was that they looked good and then proceeded to read them off . . . AST, ALT, GGT, Albumin, etc. They were all good. At the end I said, "but what?" She said, "but nothing, that's it, they look good."

Could it be that simple? Her counts look good. Period. Her liver is almost back to normal, her kidneys are almost back to normal, her protein is a little bit high but getting better and we are just so blessed. I think that the "but what?" comes from the need to protect . . . it seems like there has always been a good news/bad news combo.

So today, the But What is this . . .

Erica is doing great! Her counts are good.

Today we go in for an infusion of immunoglobulin, it will take about 2.5 hours and then we are done for the week. We continue to treat her skin (which is also looking good) twice a day. Kay even told us that we might be able to go two weeks without a clinic appointment after today.

Praise God! Answered prayer is a beautiful thing!
Photos coming soon . . . I promise!

With love and gratitude!

Daily Improvements

I've been doing a lot of reflecting lately. I've noticed that along this journey, when things went a week or more with some stability, I'd look back in awe. It is hard to believe what our family has been through and what Erica has endured but my reflection also, naturally, goes to the support we have had and the friends and family that have stood by our side. It was only last week, after writing the blog, that I read the blogs from earlier in the year . . . leading up to the transplant. I was overwhelmed by the intense faith; there was just no other way to go in to it. I suppose I'll always reflect on this time and I will continue to draw strength from the experience. I just hope that the experience ends, it's hard with situations like this, there is no clear moment of completion; there is only hope that things continue to improve.

Erica is doing well, really well. She is active and happy. The skin looks better, not 100%, but darn close. We go in to see the doc tomorrow and he'll continue to direct us on the meds/creams/etc. But as for the blood counts, the liver and kidneys seem to improve a little every week. Amen!

What is "normal"?

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.