22 days...a small victory for our sweet Maggie Caroline! She made it 22 whole days (out of the last 8 months) with no steroids at all...before relapsing. It's not exactly the outcome we had hoped and prayed for recently. But we are completely and peacefully trusting in God's greater plan.
Her relapse began 2 weeks ago on March 17th. It seemed this time, to be brought on by some simple and mild spring allergies (sneezing, itchy eyes and nose). With nephrotic syndrome, anything that stimulates Maggie's immune system can trigger a relapse. As we have learned, even innocent mild allergies can trigger a relapse. We were able to hold off on starting her steroids for almost another week after her initial onset of protein. But after a week, the symptoms began to show...swelling, fluid retention in her face and belly and discomfort.
She has been back on her full dose of steroids, daily now for a week. She is still measuring a +4 for protein in her urine (scale of 0-4...4 being the highest measurable), but has an occasional 2 or 3. She has been on Lasix daily as well to help rid her body of the excess fluid retention. She gained about 3 pounds of extra fluid weight, and she is about a half pound away from being back close to her "dry" weight. Good progress for just a week! We will be able to start weaning on her dose as soon as she is negative or trace for protein in her urine for 5 straight days.
So 22 days is exciting for us. We are hopeful that her body gained back some immune system function (steroids suppress your immune system) during those 22 days and that her liver rested.
It was amazing to see our true and normal Maggie back for those 22 days. The steroids really affect her little personality and our day to day interactions.
We are uncertain of the future at this time, but feel pretty confident that a kidney biopsy (anesthesia/24 hour hospital stay) and a course of Cytoxan (8 weeks of a daily oral Chemo pill) will be the recommended next treatment plan, based on past conversations with her doctor. We will see her kidney doctor on April 25th and discuss her treatment.
For now we are filled up by God's grace and sufficiency. These last couple of months have been good for both Todd and I and our relationship with the Lord. When we are weak we are reminded by 2nd Corinthians 4:16-18 that there is a greater purpose for the events of life and through, and in Him we are inwardly renewed day by day.
We have found great comfort in Psalms 139 that reminds us that God knows Maggie inside and out, and that He knit her together in my womb with a purpose. We are striving to be close to God so that His purpose is our purpose. We are casting our cares and fears upon Him to carry.
The more priority we give Him in our life, the less we are distracted by the burdens of our circumstances. We are committed to seek God and His wisdom and discernment as we move forward.
Our sweet girl is truly a blessing to our life and home. She has taught her Momma and Daddy so much.
If you happen to read this, would you please pray for her? For complete healing. We are ever so grateful for all of your prayers and concern!
Fervent prayer, can accomplish great things.
Love to all,
Leah
3 comments:
Hey Leah, I had not heard of what was going on with little Maggie. I am so glad to hear that she is making progress and that you have a treatment process mapped out in front of you. I am also inspired how these circumstances are drawing you closer to the Lord and thank you for sharing your story so that we too may see God at work. He is the ULTIMATE healer and she will be fine if that be his will. We will be praying for her, for you and daddy, and for little sister. For the doctors, the big decisions you have to make and that God will just protect your daily lives as you carry on in his will.
Miss seeing you girl, hope we'll cross paths soon.
Love, Melanie Tittor
Consider your girl prayed up, my Friend! There isn't a doubt in my mind that the Father has BIG plans for Miss Mags! Maybe she is getting all of her trials out early in life and the rest of her days will be smooth sailing. Do you think that it works that way??? I sure hope so for Maggie's sake. She sure has been through a lot, precious girl... :(
She is the most resilient little almost-4-year-old that I know. I cannot get over how crazy well she functions on her steroids. She is such a sweetheart!
And you, my Dear, have handled this all with such grace. You are an excellent example to your girls. One day, they will look back on this time in life and be in awe of their Mama's strength. Love you all!
You are an amazing inspiration, Leah. Always focusing on the positive. I think about you and your sweet family alot. You are in my prayers! I pray for strength for you and Todd. I pray for Maggie's good health. But I also thank God for the example that you have set for me. Thanks for sharing, sweet friend.
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