Julia has been home for a week now and she is doing well. She goes to clinic twice a week for now which means we spent more time last week at the hospital than home. Her counts were bottomed out and she needed to get a platelet transfusion last week. Because her blood work was a little off a condition of staying home was to go on overnight hydration for 12 hours. Her home care nurse comes every night to hook her up to the hydration and every morning to disconnect her. The good thing is she was able to get her a portable pump so she is able to be mobile while receiving the hydration. I feel really bad for her as she is a little confused as to why she has to be hooked up at home. Hopefully she will begin to eat better, gain some weight, and be able to hold her own levels so the hydration won't have to stay on too long.
She will be back at the hospital on Friday for Oncology clinic and we will meet with the heart transplant team next Thursday. Now that her chemo is finished she must have some cardiac testing done (yes more invasive testing). Her heart biopsy and CT scan have been confirmed for July 9th. This will be the day that will tell all. If she is in complete remission and whether or not she has any rejection going on. It feels like we just get over one thing only to wait anxiously for the next.
Normally the PICC line would come out 3 months after treatment ended but because Julia relapsed 4 months after treatment and 1 month after pulling the old line doctors have already told us that they will be in no rush this time to remove the line. This puts a damper on my plans to get her on her wish ASAP. As I've learned (the hard way) this year you never know what tomorrow will bring. I was hoping to get her on her wish while she is feeling her best. We will wait and see what the tests show on July 9th, and then I may have to negotiate with the docs.
The last week has been really busy trying to catch up on the last 4.5 months and adjusting to being home again. The kids are also adjusting to being all together again. Especially Julia who is use to having my undivided attention the last 4.5 months. Anthony and Emily want all my attention (and rightfully so), but Julia will not have it. It's a real juggling act, and a fine line between playing favorites. I guess it will just take some getting use to for all of us.
I thank you all for your messages and e-mails welcoming us home. I look forward to being able to spend time with all of you very soon. I will keep you all posted on how Julia is feeling.