I'd mentioned baby Ellison a few times previously - most recently here. She is my mom's friend's daughter who was diagnosed with Leukemia at 8 weeks old. I want to cry every time I think of what she has had to go through so far.
Well, today is the big day. This is the email that she sent to friends and family yesterday letting everyone know what's going on:
We are on Day 8 of a very rigorous regimen of chemo. For the first 4 days she received a drug called Busulfan 4 times a day (2 hour infusion each time). They had to give her Dilantin (anti seizure medication) during these 4 days to prevent seizures which can be caused from Busulfan. She was very restless from the Dilantin and acted like she had drank 500 cups of coffee. On day 5 we were supposed to start another drug called Cytoxin which she was going to get 4 doses of. Just before starting the medication her lab worked showed an elevated CK level which indicated that some muscle (not specific which muscle) was irritated. The doctors wanted to do some further lab work to make sure the irritated muscle was not her heart due to the fact that Cytoxin can have extremely adverse effects on the heart (can cause cardiac arrest which is irreversible and fatal). The further lab work came back showing elevated cardiac enzymes ( 1 enzyme was 3 times the normal and another was 9 times the normal). The doctors said that her heart function was beautiful and there has been no damage to the heart and were unsure why the enzymes were elevated (one of the meds we received in rounds 1, 2 and 3 of chemo, Donarubicin, can have adverse effects and delayed effects on the heart so may be the cause). Since the doctors don't want to chance a cardiac arrest event, they recommended we go with another drug called Fludarabine. This drug is supposed to have the same effect but without any side effects on the heart. Had we chosen to continue with the Cytoxin, we would have had to undergo daily EKG's and be on tons of fluids and other meds to protect the bladder from bleeding. I am relieved to have avoided this medicine!
So far Ellison has tolerated this 4th round of chemo well. She continues to smile and coo all day. She is sitting up all by herself now and has not regressed whatsoever developmentally. We know that God has her in the palm of His hand and she is such a miracle! She is a far easier baby than Jax or Carson ever were which is just another way God has blessed us!
We will receive our last dose of chemo tonight at 9- so relieved! She just started an immuno suppressant drug called Cyclosporin so she can get ready for Carson's cells on Wednesday night. We will continue on this medication even after we leave the hospital and they will wean her slowly once they make sure Carson's cells are engrafting.
The plan for Wednesday: Carson's harvest will begin at noon and will last approx 2 hours. They will then take Carson's cells to the lab and spin out his red blood cells (Carson and Ellison have different blood types). The doctors think that the cells will be ready for Ellison sometime early evening. All of the doctors will come in and throw Ellison a birthday party (sing Happy Birthday) when the cells begin to infuse! :) It's crazy to think Ellison will then take on Carson's blood type! We will monitor her labs closely to see how long it takes for her to transition to Carson's blood type. We will be in the hospital for approx 40 days starting Wednesday followed by an additional 100 stay in the Charleston area (will have doctors visits several times a week to check levels and to get any transfusions we may need).
I miss you all so much. Thanks for your continued prayers and support.
So this evening Ellison will be receiving the bone marrow that she needs to save her life. If you could send some positive thoughts this family's way it would be greatly appreciated. This little beauty deserves her second chance at life:
And on an unrelated note I think I have the freaking flu. Shoot me now...