That's what the day felt like when it was time to come back to St. Jude...
We left Carly and Sarah-Grace around 430am Tuesday morning. We arrived in Memphis shortly after 10am and had a full day ahead of us. We were able to stop by the Target house for about 30 min, enough time to drop our bags, open a little bit of mail, and catch the next shuttle to St. Jude. A fast lunch and then she went through PT, OT, had her port accessed and a check up in the clinic. We picked up our mail, enough to fill a wagon and a backpack and got to head back to our house to unload our mail truck (aka. Target Cart).
Some FaceTime with mom, we unpacked then repacked while dealing with some confusion with time. I had no idea which phone, computer, or clock had the right time. The clock in the kitchen apartment was an hour behind the clock in the bedroom. The IPad had a different time than the one in the bedroom. For a while I convinced myself I had and hour more than I actually did. I even had to text Carly asking her what time it was in Virginia... We barely caught dinner at 7 before the cafeteria closed and were checked into our inpatient room by 8:15. We were both whooped and asleep in no time.Wednesday Ellie continued her chemo treatment with Vincristine and Cisplatin, drugs that will continue to stop the tumor cells from dividing/growing. She's also been give Septra to prevent infections and anti-nausea meds as well. Even with a long list of possible side effects Ellie made it through the day flawlessly! Id tell about our doctors visit but apparently they stopped by while Ellie and I were catching our 2 1/2 hours nap, pops! At least we didn't sleep through lunch..Ellie and Sarah ... unfortunately not Sarah-Grace
This is Ellie ditching me for her best friend in Physical Therapy, Angela. Ellie "see you later daddy"...Spending some time making and Easter card with some volunteersThursday morning Ellies blood and urine were tested and all came back with good results, praise The Lord! Today she received Cyclophosphamide and Mesna. Cyclophosphamide has a higher risk of bladder infection and the Mesna is given to prevent the damage to her bladder and offers some side effects of its own. The Cyclophosphamide only took about an hour in the IV and they gave her a dose of Mesna before and after the cyclophosphamide. She will get five doses total.
Ellie did get sick today around noon and took a nap shortly afterwards. She hasn't eaten much of anything today (except goldfish), understandably.A group of 5 doctors came by to check-out Ellie. They didn't stay too long because she had just gotten sick before they walked in the door. I'm sure we'll see them before we escape tomorrow. In the late afternoon her urine output was higher than her fluid input, which I am told is typical for cyclophosphamide. They added an additional IV to make sure she was getting enough fluids. We made it through that and she's back to her normal IV.
Ellie deciding on her own to make a funny face at Dad..
Ellie and Abby...
We are expecting to be discharged from the hospital tomorrow. Maybe then, we'll actually get to spend some time in our apartment and officially get moved in.Going forward....
They will continue to monitor her hemoglobin through bloodwork. Hemoglobin is a protein in the red blood cells that carries oxygen through your body. Typical hemoglobin levels are 12. Ellie is currently at 10, but is not a concern until it gets below 7 or 8. If it gets that low she will need a blood transfusion, which is expected to happen at some point. Her Absolute Neutrophil Count (ANC) are expected to drop within 7-10 days (from yesterday). Once it drops below 500 she is at high risk for infection because she will not be able to fight them off. In order to help her bone-marrow to build up neutrophils she will be getting a daily shot of G-CSF (Filgrastim) for 10-14 days until her counts. I will be giving her these shots most of the time unless we are inpatient. I got my lesson earlier today of how to give the shot but the nurse has to watch me give her an actual shot and approve before we can get out of here. From what I understand we can probably also expect to see some hair loss by end of next week as well.
I'll be praying greatly for these things and anticipate the same from those who read. I'm not really sure how to prepare myself to see some of these things come to life, but we expect a couple visitors next week (Aunt Kimmie and MawMaw), I suspect their support will be put to some good use. :-)
Super Dad & Super Ellie
I Miss you Sarah-Grace and Carly!