Dear friends, I am sorry I couldn't update our situation,because we were in the isolation room, although her blood and stool culture are all negative finally before we came back.
Thank you for your email and comments.
We are back to our sweet home tonight after receiving the chemo therapy last Friday and five days of 3F8 antibody therapy which is best treatment for stage 4 NB kids.
Thank God for providing Xinxin the best treatment with the best doctors.
The only side effect of 3F8 is severe pain. Xinxin was on morphine before and after the treatment. it was so painful that she cannot tolerate even with morphine, I will try to post the videos during the treatment.It is too large to post here. I have to figure out how to post.
We were very boring because we couldn't use computer and the only channel of the TV is in Cantonese which is a foreign language to us. Thanks to the books my friend Nancy, Joe and Howard send to Xinxin from USA a few days ago when we were in hospital.Xinxin had a great time with her favorite books.
Our next appointment is to go back to QMH to do the ROT(I guess it means radio therapy). We will have to call the ward to know the date because I don't want the appointment time on Monday.
I will try to write more tomorrow about 3F8 treatment since I am too tired.In the isolation room, we have to obey lots of rules like sleeping time (11pm to 6am) and no shower because they don't allow parents to use the Toilet.And no vistors at all, that's why my friend-Maggie couldn't meet us when she came to see Xinxin in QMH.
Anyway thank God, we can survive.Please continue to pray for Xinxin.Thank you/Wish all a good weekend.
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Oct.6th 2004--Jan.10th 2009
XinXin
Pray for Xinxin
Welcome to Shu Qin (pet name as Xinxin)'s web page. It has been provided to keep friends updated about Xinxin's progress as she battled stage 4 Neuroblastoma.
She was diagnosed on December 8th, 2007 in KK Women's and Children's hospital,Singapore. She had four rounds of Opec and Ojec Chemotherapy. And she had a twelve-hour surgery on April 2nd 2008. Then she had four rounds of N7 protocol since the biopsy of the tumor showed little response. She did two rounds of strong chemo( cyclophospha and topetecan)But the bone marrow trephine was still positive.
We came to Queen Mary Hospital Hong Kong on Oct2nd,2008 for further treatment. Xinxin had 2 cycle of chemotherapy (gemcitabine and oxaliplatin) and one round of 3F8.
Her disease had spread, very rapidly, to her pancreas and everywhere.
Xinxin passed away at 3pm on Jan 10th,2009(Saturday).Her last word is that DON'T WORRY ABOUT ME.
We miss Xinxin a lot but we won't worry about her anymore as she is living happily in God's arms.
As her parents we want to thank God for holding our hands walking with us and for giving us such a good gift that we learned a lot from and thank all the friends who are helping us. Thank you all for being our friends.
She was diagnosed on December 8th, 2007 in KK Women's and Children's hospital,Singapore. She had four rounds of Opec and Ojec Chemotherapy. And she had a twelve-hour surgery on April 2nd 2008. Then she had four rounds of N7 protocol since the biopsy of the tumor showed little response. She did two rounds of strong chemo( cyclophospha and topetecan)But the bone marrow trephine was still positive.
We came to Queen Mary Hospital Hong Kong on Oct2nd,2008 for further treatment. Xinxin had 2 cycle of chemotherapy (gemcitabine and oxaliplatin) and one round of 3F8.
Her disease had spread, very rapidly, to her pancreas and everywhere.
Xinxin passed away at 3pm on Jan 10th,2009(Saturday).Her last word is that DON'T WORRY ABOUT ME.
We miss Xinxin a lot but we won't worry about her anymore as she is living happily in God's arms.
As her parents we want to thank God for holding our hands walking with us and for giving us such a good gift that we learned a lot from and thank all the friends who are helping us. Thank you all for being our friends.
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