Almost three weeks since I last updated.
For the most part, if you have been following Team Mona Rabiosa on Facebook, you know that all has been going well. Her counts have been coming in nicely on their own and keeping stable. This is a good thing. She has not needed a blood transfusion in almost two weeks!
She developed a small rash, or "redness" all over and she was immediately started on antibiotics and steroids. And though it was slowly, this rash has gone away! Not sure yet if it was a sign of GVHD (Graft Versus Host Disease).
Graft-versus-host disease is a frequent complication of allogeneic BMTs. In GVHD, the donor's bone marrow attacks the patient's organs and tissues, impairing their ability to function, and increasing the patient's susceptibility to infection. More information on GVHD can be found at : http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html#anchor412913Last week, Nayelis also had an MRI of her head and bone marrow aspirate done. The results of both came back negative! Everything is looking good. THe MRI also showed no sign of the "mass" that was there before. God is so good! This week, rounding with doctors, has resulted in most of her IV medications being changed to oral medications! Which is a good sign. This mean that we are so close to being discharged. I asked, because I just had to, and they said that hopefully for this weekend if not Monday she will be able to go home. As long as everything continues as it is presently. Please continue your prayers! I think that she needs to be out of here as much as I do for our mental health's sake. Lately, all she wants to do is stay in bed and sleep. Her appetite is starting to slow down again. She tells me that she wants to eat her spaghetti & meatballs at home with her brother. =( Fortunately, the doctors are allowing her to leave the room and take strides in the hall in the evenings after visiting hours, as long as she has her mask on and is gowned up. And of course, you don't have to tell her that twice! The only bad thing is that she wakes up the next morning saying that she wants to go for a walk. When we tell her that she can't and has to wait until the night time, the fight in her starts. She becomes resistant and doesn't want to deal with anyone. I know as much as it is hard for me to be confined to these four walls, it's even harder for her. Sometimes I have to lock myself in the bathroom and let the tears roll down so that she won't see me. She senses when I am down and is quick to ask if I am ok. Today a friend of mine posted a youtube link to my wall. It is Martina McBride's "I'm gonna Love you through it." http://www.youtube.com/watch?v=iey3eFrDMXA&feature=youtube_gdata_player She said she head the song and thought about Nayelis and I. I've heard this song before and it's one that I like and can relate to. Especially the following lyrics: "When you’re weak, I’ll be strongWhen you let go, I’ll hold onWhen you need to cry, I swear that I’ll be there to dry your eyesWhen you feel lost and scared to death,Like you can’t take one more stepJust take my hand, together we can do itI’m gonna love you through it."The crazy thing, and I was telling her, is that many times I feel like it's Nayelis helping me through this. She's giving me the strength when I feel weak and scared. She's my (s)hero. Everything that she has endured and yet she still manages to smile and keep going. <3 This Friday, the 28th, Nayelis is going to have a procedure/surgery. They are going to remove the temporary line she currently has, and they are going to place a port in. This will make things a lot easier for us when she is discharged. She's a busy three year old, and I would go nuts if she accidentally the temporary line out. I'm praying for a safe and quick procedure. Here are some pictures of the last week or two:                    Now it's time for some nighty night! God Bless you all! |
