Just a couple quick updates -
Friday morning the nurse practitioner from Neurosurgery, Laurie, tapped her shunt. She is the nicest person in the world and stops by often just to say hi and see how Lillian is doing. (Yes, without even billing us! Rare in the medical world.) Because she is one of our favorites, we were happy that she would be doing the procedure. She was also thoughtful enough to put numbing cream on the site prior to the poke. Unfortunately, she was not able to draw enough fluid to run the test. They don't think that Lillian has an infection but wanted to run the culture to double check. Plan B is now to watch for any fevers or other signs of infection. Again, so far, so good.
The stem cell transplant went as expected. (Reading between the lines, it was as miserable as always.) Partially because of her allergic reaction to the prior two transplants and partially because our room was right outside the nurses station, this time we had 2 nurses and 2 doctors tending to Lillian throughout the procedure. This constant attention led to more tests and medications than previous transplants. Once the swelling and vomiting started, they decided to give her epinephrine (adrenaline). The epi caused her heart to race and her blood oxygen level to fall a bit. They decided to give her an ekg and a chest x-ray to ensure her heart and lungs were functioning normally. After all of this, they decided to keep us another night. (We'd already packed the car so we all slept in what we had on.) Finally Saturday morning after a platelet transfusion, we headed for home.
We're hoping for some good rest tonight before heading back to the hospital for a clinic visit tomorrow morning. I won't burden you with details but we are making what I would consider cancer's version of "Sophie's Choice". Radiation is not a clear cut decision for a two-year old. There are risks to doing it and risks to not doing it. Unfortunately there is not enough evidence to clearly determine which are the better risks. We are praying and researching and getting the advice of our team of doctors. Please pray that God would give us wisdom and peace with this decision.
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10 comments:
My thoughts and prayers are with you and Lillian.
Stay strong-
Sara Scott
Dear Lori, Jeff, and Lillian,
We are so pleased to hear Lillian came through her last chemo treatment. While we understand your comment that she still has a road to climb, at least that milestone has been accomplished. We also appreciate this blog. With all you and Jeff have to do, you still take the time to keep us all informed. We are grateful!!
To Lillian: We saw your Nana and Papa in Arizona. They miss you lots. The pride they take in how all three you have handled this is boundless. We agree with your Nana and Papa! You are all amazing! Take care and we will keep praying!
Paula and Tom
Dear Lori, Jeff and Lillian,
You don't know me, but I am a close friend of Grady Newsom (Katie, Brooks, Christina and Coleman too). Katie passed on to me that you have some difficult decisions to make for your two year old Lillian. I wanted you all to know that you will be in my thoughts and prayers. I will be praying for clarity, strength and peace for you all.
Take Care,
Nancy Leitgeb
Dear Lori, Jeff, and Lillian,
You don't know me, however I am Grady's babysitter (Nina, and Coleman's as well). Katie informed a few of us about your hard decision, and I just wanted to let you know that my prayers are with you.
Sincerely,
Wynter Hite
Lillian,
You are the sweetest, prettiest little girl! We loved seeing you at clinic! Our prayers are with you and your parents, we know you will all be lifted up by God's love! Stay strong sweet one.
Love,
Brooks, Katie, Grady, Nina, Coleman and Christina Newsom
Lori, Jeff and Lillian,
Katie Newsom (sis-in-law) emailed today and included a link to your site. I wept as I read through what you have endured these past months. It hit me especially hard because we have a two-year-old named Lilly, who wears those same pink-striped fuzzy Gap pajamas and LOVES "Little Einsteins", which she also calls "Rocket Show." Imagining anything going wrong with her is devastating, although unfortunately, we know what that pain is like. (One of her older sisters, Chloe, died in 2003 at 18 months following an accident.) My prayers are with you and I hope you feel comfort and peace in the midst of your pain. There are many who care, even if we have not met. ~Jill Newsom
Dear Lori, Jeff and Lillian,
Have been thinking of you. I am so glad to hear of the amazing milestones you have achieved. Lillian is just a strong and beautiful little girl! You are all such an inspiration to me. I wish you continued strength and guidance as this difficult journey continues.
Love,
Heidi T
A HUGE thank you to all of Grady's family and friends. It is overwhelming to have the support of so many people we haven't even met! Our prayers continue to go out to Grady as well. You can tell he's killin cancer - even his hair refuses to give in.
Lori, Jeff and Lillian,
You three are the bravest fighters...you all continue to be in my thoughts and prayers.
Lori, I've known you since the day you were born...and you have always had a special way about you. (Remember the stories of you being determined not to go to sleep at my house...and determined to try out all the peaches in my box of peaches?)We now know that no matter what you face, you continue to be determined...We love you, and love the woman and mother you have become. Few of us could give like you do...hang in there. With love, Claudia
Hi Lillian!
I saw your mama today at the hospital, we hear you are working hard to go home...we're pulling for you girl, keep it up. All our love and prayers for a short stay! See you tomorrow for some home cooking (with special dinosaur ingredients).
Go Harris family!
Love,
katie and Grady
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