Well, she has officially started the protocol. "No turning back now", Dr. Wagner joked this morning. So this is the way it works: Day negative nine through day negative one Elle will receive chemotherapy (a countdown to transplant). The chemo, wipes out her own white blood cells to make a clean slate and so the donor cells can engraft. Day zero, she will receive
her "transplant", donor stem cells via IV infusion. Then the count starts day +1 to roughly 100.
Daddy, also recently here, enjoying a smile on her first day of chemoShe started getting anti nausea meds at 0330 this AM and the first chemo, Busulfan at 0400. She will get Busulfan over 2 hours, 4 times per day for 4 days. Chemo decreases or obliterates white blood cells, red blood cells, and platelets which increases risk for infection, anemia, and bleeding; an obvious issue with open wounds from EB. Busulfan in particular can cause skin burns d/t excretion of the drug through body fluids/wounds. Another risk with Busulfan is the risk for developing:
Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant...(Wikipedia).
Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant...(Wikipedia).
To address these risks, we will have to change all of her dressings every day, and her Busulfan blood levels will be frequently checked and adjusted as needed. Friday the Busulfan stops and Cytoxan and Fludarabine starts.
Her hemoglobin is 10 today (11-15 normal), but that is very good for her. Her Albumin is 2.4 (2.6-4.2 normal), also good for her. o2 sats 90's. She is tolerating her first day of chemo very well. She is alert and plying -I had a little sympathetic nausea however. 
Chloe looking cool with GG and sporting new ladybug outfit from Marla
This is my prayer for the week:
ReplyDeleteGracious God, healer and source of all life, we praise you! You know every platelet, every mitochondria, every nerve and muscle and hair and cell in our bodies. Today we ask that you watch over Elle. She is so little, and chemo is a powerful treatment. Hold her in your gentle arms. Guide her doctors and her nurses as they work to ease her pain. Use their hands for your work. Please watch over Becky and Steve, too. We know that they are anxious and afraid for their little girl. Hold their hands. Ease their furrowed brows. And wrap them in the secure knowledge that you are watching over Elle. Be with Chloe, too. You are growing the great love that sisters share in her. Help her to flourish and to know your deep, abiding love.
All these things we ask in the name of your son, Jesus Christ, who you sent to die so that we may live. Amen.
Always thinking of you!
Praying for Baby Elle...and standing in agreement with Angela's powerful prayer for complete healing.
ReplyDeleteChecked your Blog to see if all got started today. I am praying for your whole family during this time. Thank you for sharing your journey with us.
ReplyDeleteHi Becky, Steve and your entire family,
ReplyDeleteI have been thinking of you all day. Thanks for the news of how the first chemo day went for 'lil Elle, ---could not ask for more than that---well maybe a little maalox or ativan for Becky's stomach. God bless. ~ Lisa T.
Your family is in our thoughts. I am deeply moved by your 'story'. Wishing all of you strength and courage.
ReplyDeleteThanks for the update and taking us on your journey. Hoping all goes well with the chemo. It is such a shame that they have to go through all of this just to get better.
ReplyDeleteExtra prayers for sweet little Elle. She is always in my prayers and my heart. Love Leah's Nana