This roller coaster we're on is far from over. Just as Lillian had defeated the evil infection and mobilized the stubborn fluids, they appear to have returned. Perhaps they had only retreated and not fully surrendered, I don't know. These must be Osama-germs or something.
They suspect she may have another infection but have yet to find any positive cultures. She has ballooned up again and though she's not yet at her highest previous weight, she's making fast headway. Every time they come up with a new test to run, I actually find myself hoping they will discover something. Something obscure but easily treatable of course.
Among the many tests are a daily chest x-ray. I was just reading Parents' magazine where a mom wrote in asking if dental x-rays were safe for her 4-year old. Boy, what I wouldn't give to have just one x-ray a year to worry about. I keep telling the docs that they've radiated her so much with the x-rays that she won't need radiation therapy after this.
Despite the best thinking of about a dozen of the country's finest doctors (between the PICU, Oncology and specialists), we have yet to find a reason for her backslide. Or for her prior stalemate for that matter. As they put it "she is a sick kid." (I like that terminology, it sounds like she's battling a cold or something.)
We've hit the 3 week mark and I'm about to start putting hash marks on the door to keep up. Your kind words of encouragement, care packages and meals have truly sustained and overwhelmed us. I actually left the building today and went out for lunch with two of my fav soul-sistas from Village, Jennifer and Wendy. It really hit the spot - the conversation and the food! Thanks also to Maddy's mom for the yummy meal, and totally out of the blue!
Please pray for wisdom for the doctors. I keep thinking that there is something we're missing but I know that is just because I'm a worried, medically-ignorant Mom. Even if the cause is unclear, let us find a treatment that successfully heals her lungs and mobilizes the fluids once and for all. (Out of your caves you wimpy Osama-germs and fight like men!!!)
Our friend Lexie could also use your prayers. She was supposed to have her tumor resected yesterday but her platelet counts were too low. They had to postpone the surgery an entire month and are adding another round of chemo in the meanwhile. Talk about a roller coaster! (caringbridge.org/visit/lexiethornton)
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9 comments:
At work lately I have had to do alot of laundry. My mom came up with this great idea of offering every fold as a prayer to make Lilli feel better. Well, last night I had 8 loads so she is bound to get better with all those prayers. We all love you Lilli keep being strong there is an end to this rocky road and it is bound to be beautiful!!!! With love the Corbett-Hoisingtons
My heart dropped when I read your latest update, I wasn't expecting this, I was ready to read that she was laughing or at least glaring! I am sorry for the backwards motion, and the fear that must accompany it. You have a battle to blaze, but I trust that God's healing power is fierce, and he is working his will. He is greater than any Doctor or infection, and especially Osama!
Bless you both as you must miss your sweet baby's voice and hugs, she is bound to heal quicker with yours. You are a beautiful family with so much strength, I am inspired by your humor and overflowing spirit during these shades of grey.
All my love and prayers for her recovery,
Katie
Well said Katie. I am so glad Jeff & Lori have found such a wonderful support network in the cancer community at Doernbechers! It has been inspiring to read Lillian & her friends blogs through this journey. It is just wonderful how you all really work together and get your friends and family to pray for eachother. The power of prayer is truely amazing. It is sometimes difficult to play the waiting game, but God truely does have a plan. Lillian, Grady, Lexie, Maddie and their families (as well as all the other children at Doernbecher) are all in our prayers! Beth & Family
Lori,
It felt so good to have the soul sistas back in action yesterday! The boys love their bracelets and we're all using them as reminders to pray for Lillian anytime they catch our eye. Thank you so much for coming with us yesterday. We're praying for you and Jeff.
Love,
Jenn
PS - Let Jeff know I'm still trying to figure out how I can smuggle in some beer & pizza for him. They'd totally trust someone who works for a church, right?
Lori
I was so disappointed to hear that Lilly is still having fluid problems. Hopefully a solution will be found soon. Keep up your brave fight. Lilly is in our daily prayers. Jean M.
I am so sorry to hear about this setback. My heart goes out to you guys. As Katie said, God is working his will to get her recovered. I KNOW that her setback and her being sick is not his will, but getting her better IS.
Believing,
Robyn and Lexie
I am so sorry that Lillian has had a setback with those pesky osama germs. We will pray for the wisdom of the doctors and that she continue tobe strong for the fight! We are thankful for your updates and will continue to hold you all in our thoughts and prayers.
Love Abra and Chip
Hope everything is going okay. Been checking constantly for any news. Hang in there you guys. Lillian, keep killing those germs and get them all flushed out of your body! I am so anxious for you to be better and I can hardly stand it!
love you guys and still believing,
Robyn and the rest of our cancer killin family
Hey Lori,
I think about Lillian and you and Jeff all the time. I am praying for you and always thinking good thoughts.
Love,
Amber K.
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