Hi MW and Karen,
We are home for almost 5 weeks.. Gia is getting treated at home for her systemic fungal infection.. She is getting ambisome and posiconazole and will be on those anti fungals for a while. The last CT scan didn't show much improvement with the fungal infection. Infact this time they found 2 abcess in her brain( most likely fungal) . The docs didn't want to do a biopsy for her brain.. It's probably not new just found at this scan...
Our family had a meeting with transplant director and she basically told us that with this much infection still present, a second transplant isn't an option for Gia. She has shown minimal improvement on scans in the last few months... Clinically Gia is walking now and like a 4 year old .. She loves going to mall to ride Christmas train. She is not eating and has to take feeds thru her NG tube.
Our oncology doctor keeps pushing us for a low dose chemo. I don't see how it would help Gia. AML is aggressive and in her last relapse came back on labs within a weeks time.. So we have declined that idea. I feel it would slow her healing for fungal infection big time.
According to the doc, low dose chemo would possibly slow AML by days/ weeks..
So we take it say by day.. Hoping today is not the day we receive the news... I had hoped for her to be able to enjoy this Christmas since she was post BMT last Christmas and in isolation. Gia was able to attend a Christmas party from my work too...
So she is home with us and medically untreatable for both fungal and leukemia. I have been praying a lot.. Miracles do happen and the one we need is that leukemia doesnt come back.
Karen, I am sorry about Leann.. I had send you a private message but your mail box was full... I know you have gone thru a lot too... I think of you and your daughter often and pray that she gets healthy soon... Prayers have powers. Don't give up hope... Whenever I feel low, I think about my 4 year old daughter who has gone through numerous chemo, radiation , surgeries , ICU trips.. Transplant and life in isolation for the last few years. If she can do it, I can do it too. Be strong And stay positive...
I will keep you updated about Gia. Her next scan is Jan 9th... I am just glad to be home and celebrating holiday home.
I just wanted to say I have thought of your sweet girl often, but didn't want to pry. I have never used an Internet discussion board before my son was DX, so I'm a liittle unsure of the boundaries/etiquette. But I am so happy that you've updated, I will adjust my prayers accordingly :)!
You and your family are in my prayers.
Update about Gia.
We found out that her Leukemia returned on Jan 5th. Gia couldn't get any more chemo due to her fungal infection. She passed away on Jan 31 St at home. We hoped that she had more time but AML is aggressive and she got worse very quickly.
She had fought cancer almost all her short life. I want to remember her as a brave and courageous girl.
I have many times tried to respond to your post, there are no words. Recently, a friend turned me to Nancy' Keene's leukemia book, and there I read a parent's statement: the death of a child goes against the order of the universe. I think the pain must be as far reaching.
I have cried for you, for the pains you bear in trying all your might to help your daughter, to be here, now. I cry for Gia, for all she endured, and for a life cut short (especially a life with a mother so devoted as you). I am heartbreakingly sorry. So sorry.
You and Gia are in my prayers.
I am absolutely devestated for you, your family, and for sweet Gia. As a fellow angel mommy, I know all too well the pain you are feeling, the emptiness and loneliness you are feeling right now. I wish I could say it gets better, but at this point the pain is still so raw, so real.
Hang in there. Your Gia and Leann are now playing together. I am sure my sweet angel has taken Gia under her wing and is caring for her and watching over her like a big sister.