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Saroh,
Thinking of you and Gia. Ever since I heard/found out she was battling a mucor fungal infection, I've felt a connection to the two of you.
Hoping things are doing okay.
-Karen
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.
Goodness saroh. So much for you and your little one to deal with. You all are in my prayers and i hope you holiday weekend is quiet and uneventful. (((hugs))
Saroh,
I want you to know that we are praying for you and Gia. You are right Miracles do happen. God Bless your family this Christmas. May your prayers be answered.
Nancy
Hi Saroh,
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.
Mary B.
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.
Saroh
Oh Saroh, I am so saddened by this. Sending you love and strength and hoping you are hanging in there. She was a brave and courageous girl, no doubt about that.
I am extremely sorry to hear this saddened news.... Please accept my heartfelt condolences.....
Take care,
Puneet
Oh, God, I am so sorry....thank you for letting us know....I have been thinking of her....
Lorna
Saroh,
I am so sorry. You are right Gia was a true fighter. A real life hero, strong, brave and most of all truly loved. My heart breaks for you and your family.
Love and strength,
Nana
Oh, Saroh, I am so so sorry. I have been thinking about Gia recently. Thank you for sharing with us. May you find peace. ~Theresa
Saroh,
I'm so saddened by this news. I cannot imagine your grief. I've been thinking of, and praying for Gia. My prayers will continue, for your whole family. I'm so sorry.
Mary B.
Oh! I'm so very sorry Saroh!! Gia was such a fighter. Prayers for your family during this painful time!
I am so sorry for your loss and you will be in my prayers, I just think that could be us down the road, my 3-year-old has AML... so devastated... RIP little Gia!
Saroh, I am so sorry. No one should ever have to bury their child. Unimaginable, the pain you must feel. My heart goes out to you and your family.
Saroh,
I am so sad to hear about Gia. Bless you and your family. Thank you for sharing your journey with us.
Melissa
Hi,
I'm so sorry to hear this - it's just heartbreaking. I've thought of your Gia often and admired the both of you very much. Thank you for sharing her with us. I hold you and Gia and your family in my heart and prayers.
I am so sorry. What courage our children have! I hope you have rest, and as time passes, peace. Cheryl
Saroh-
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.
Renee
Saroh,
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.
-Karen
