Xinxin's bone marrow result is out- still positive. And we will admit to the ward in QMH this Friday for further treatment. Whatever happens I trust his healing hands and I believe Xinxin is blessed to have so many God-send angels to help us to pass through.
Tomorrow we will be very busy packing.And my friend-Emily has arranged cars to send us to the airport. And one of my friend will look after our flat in SINGAPORE. So please do not worry anything. And continue to pray for Xinxin. Thank you very much.
I want to thank God for sending so many good people to help us and doing all these.
Praise the Lord.Today she didn't have diarrhea. Please continue to pray for her that no diarrhea at night(last night she had twice )
Please also pray for another NB kid. It's the first time we met this three year girl in KKH.She was diagnosed to have stage3 NB when she was one year old and she is having OMS ( slow in thinking --something like that, I am not sure). But during the last few weeks, she started to vomit and the CT scan showed three spots in the liver. Today she did biopsy. The doctor told them, if it is confirmed to be relapsed, it will be no cure. The parents now don't want to think what it is, they are praying for God's choice. They told me that they pray if God want take her, just take her. But let's just trust in Him and hopefully nothing in the liver.
What a good sentence it is and it is true.I know Xinxin is progressing slowly but at least it is improving. One doctor was trying to tell me that even with treatment, she won't make it.And another doctor told me that he met Xinxin's situation before--that boy didn't make it. A friend introduced me to know some parents whose children were died of cancer and wanted me to see how strong they are. But I know God never let me down and never told me a word of dying. So I will just believe in Him and let us see how He is making it.
Thank God, Xinxin's diarrhea is improving.
Please continue to pray for Xinxin. THank you.Wish you a blessed week ahead of you all.
Due to her diarrhea, the doctor asked us to stay over the weekend and wait for the stool result. So far only a few yeasts was found. But yeast is normal in our body, and her diarrhea is quite bad(9 times). And then Xinxin's party on this coming Monday has to change to the ward instead of the Disney Theme restaurant. And the worst thing is that Xinxin threw my cell phone on the floor a few times and the last time was yesterday for the reason I myself still don't know. So ...
The CT scan result is out-the tumor is still there and is stable, which means it is the same size( at least it's not growing).
I don't know we should feel happy or sad. My husband is definitely very sad. It seems that the last two rounds of chemo is useless and only made her suffer.
But who knows what it is? Even the report writes that the mass is likely to tumor. So my understanding is we will have to wait for other results and see her progress. The good thing is that it is not growing.Let's just trust in God, He cares for Xinxin and of course is in charge of the results.And HE is more than able to deal with the issues in my life. 'Be anxious for nothing…."
Please continue to pray for Xinxin. Thanks you very much.
She did BMA and CT scan today. We still do not know the results next week. The doctor for BMA is really super today. Xinxin came out within half an hour.So I know God is watching over all these and of course aslo the results.
The only problem is that Xinxin is having very bad diarrhea with blood inside. So far they only find few yeast inside. Yeast again.She had so many times of watery stool, but she can still hold her urine, isn't that good?God is holding her hands and staying inside her.
Please continue to pray for Xinxin. Thank you. Wish everybody a relaxing weekend.
My friend-Fengjie came to see us this afternoon, we had a good time.
Please continue to pray for Xinxin--we are going to KKH to do BMA and CT scan tomorrow. I know God is taking good care of Xinxin, and I believe He will in charge of all the result.
Thank you for your prayers
Xinxin is still doing well. Today she had three dumplings. She went to bed one hour later than usual. Before she went to bed, she told me to put less water for her porridge tomorrow. I thought she felt hungry, but she explained that she did not want to pass urine on the bed. I see. How nice she is!She knows that tomorrow she will start to collect her 24 hours urine for VMA test-it's a test to test the level of cancer cells in her body. Hers was from 128(Dec,2007) to 9.5 (June,2008). If it is below 6.5, it means positive- no more cancel cells.Let's just pray for her. She never wear diapers after one year old and never wakes up during midnight. But she did missed one time of urine collection because of too much water before sleeping.So that time she had to it again.
Please continue to pray for Xinxin and thank you very much.
Today my friends Chongho and Bee came to see us and strengthen our faith to God.I want to thank God for sending angels like them to help us and know better of Him.
Xinxin asked all the family members to pray for her tonight. But she slept before praying...
Please continue to pray for Xinxin.Thank you very much.
We will have to start to her VMA free diet today because yesterday I gave her one medicine which I confirmed with the nurses and doctors in HHK today that it has VMA. So we will have to Admit to ward on Friday instead of Thursday.
Please continue to pray for Xinxin, and thank you.
These friends are all from China, and most of them are still students here. They pray for Xinxin every day.My friend-Yan Qiong left before this photo taken. This photo was taken after praying.We thank God who bring us together.
VMA free diet means that certain food she can not have during these fours days including collecting day also.Actually, it is fine for her because she couldn't tolerate many things. The only thing which she will miss a lot is banana .
Today many friends came to our home to pray for Xinxin. We enjoyed a lot for the praying part.They planned to give Xinxin a birthday party.We made dumplings at home and had a good time.The only thing is that Xinxin can only watch us eating dumplings. I only let her tried two instead of a bowl to make her full. So far so good. I think it is God who asked these good friends come to tell us the Xinxin can tolerate dumplings now. So maybe I will let her try more tomorrow.We haven't had dumplings for half a year since we don't want Xinxin to be disappointed without eating.
Xinxin is fine today except four times of diarrhea. It was thinking whether it is God that doesn't want Xinxin to try milk for some good reason I can not figure out yet now.She was quite OK for the past week.And today I didn't give her different food, but I was thinking to let her try milk soon. Because she is really very skinny and her protein is lower than the bottom line. My friend Longjiang who came to see us last weekend emailed me today to tell us how sad he was when he saw Xinxin turned into such a skinny little girl from a lovely angel.He also mentioned that he even dare not look at Xinxin's leg and arm that day because it is hurting a lot to see a child suffers so much.
Yes, we also feel very sad, but I believe God has his best plan for Xinxin and we can tell Xinxin is getting better and better.
Let us just for Xinxin and God will give her what she needs and not what we want. I believe God's choice is best and He will watch over Xinxin closely.
Please continue to pray for Xinxin.
After discussing with my doctor-Dr. Chan and the doctor in HK -also Dr. Chan, we confirmed the flight to HK--Oct.2nd just ten minutes ago.Oct.2nd is cheaper than Oct. 1st, so we just changed our plan.
We will be busy packing. And dear friends,please do not buy any toys for Xinxin since we are moving. Thank you a lot.
Have a good weekend.
And she had a platelets transfusion as we expected. As she has been exposed to Chicken Pox, so she had to admit instead of to CDT. But anyway, we came back at night. Her stool still has yeast for almost two months. But the doctor said it should be Ok since she is not having fever.
Please continue to pray for her. Thank you very much.
We met Emily and her son to do the check up. Thank God her son is as well as last time's check up in June. Emily also cooked some chicken for us to eat. How nice it is to have a friend to bring food to us when we are at hospital.
Actually Xinxin doesn't have a Wish. She can talk but she doesn't really understand Wish. After talking with a few friends, I understand that she deserve to enjoy a little bit after ten times Chemo, one big surgery and a few times small surgery.
A volunteer came to our home and talked with us especially with Xinxin.After seeing her, and talking with her, they will decide what to do with her Wish. Xinxin loves Mini Mouse and Hello Kitty a lot. But I do not want her to have too many stuff toys since we are moving to HK soon. And we don't know when we will come back. Hopefully her Wish will come truth. If I could have a wish, I wish that no cancer patient in the world.
Please continue to pray for Xinxin, thank you.
Her appetite was not as good as the past few days. She is tired of plain porridge now. She wants to have rice and vegetables which we still haven't let her tried. She couldn't tolerate vegetables. But she finished one egg and a small piece of fish. My friend-Chen Jian, sent some fresh fish last night. Actually she always sends us fish. We do not need to buy fish even for adult as well. We only give a small piece to Xinxin, the rest will be in my stomach. HAHA...Chen Jian is the helping us from last year when Xinxin was diagnosed till now in many different ways. I thank God for sending such a good friend to us.
Pleas continue to pray for Xinxin. Thank you a lot.
Other than diarrhea, she is fine today. We went to Yishun Park again. It is so nice that we can go to the Nature place every day. It would be great if she were not sick. But if she were not sick, would we come here everyday? Definitely no. We will very busy everyday, and Xinxin will be forced to learn all those Kid-Must-learn things, like drawing, English,singing or maybe Piano as I used to plan to put her into class. And she has to be the top student not to make parents disappointed and goes to the best school we could find for her. And only now, when she is so sick, we can put everything down and enjoy the simple life.But it is still not too late, at least we realize it now. So we should thank God to let us realize which is more important in our short life in the world.
We had a great day today. Yesterday, my husband wanted to buy moon cakes, I stopped him because I know it will be cheaper today. The early morning, our neighbour gave us two moon cakes and some lanterns for Xinxin. And in the afternoon, my friend Shoufeng and her hubby Longjiang came to see us. They also passed some moon cake bought by our friend-Hanhui. Thank you all these friends and thank God to let us having a blessed Mid-autumn Festival.
Xinxin is still doing great-eating well and have fun at home. The whole day she stayed at home, except late afternoon, she went to Yishun Park for a while. One thing is that in China children have lanterns on Lunar Jan.15. But anyway When in Rome, Do as the Romans do. So we also have fun with the laterns this year on Mid-autumn Festival.
Wish everybody a pleasant week ahead of you.
Last night, before xinxin went to bed, she was warm. I took her temperature, it was 37.4. Later I took again it was 38.0. My husband took it again, it was 37.6. I knee down to pray for no fever of Xinxin. Then I pray with Xinxin again. After Xinxin went to bed. I pray with my husband one more time(he efused first, then agreed with me when I asked him the second time). And then I messaged almost all my friends. During night time, her temperature was around 37.5.
This morning, when Xinxin woke up, I took it again.Xinxin asked me if she was having fever. When I said NO, she quickly said Thank God. The whole morning she is still a bit warm. In the afternoon, I took it again, it was 36.4.
From last night till today, I never give her any medicine and she didn't drink anything as usual. She doesn't like water at all. Some more during sleeping time, she won't drink. The only thing, I did is that I pray as much as I can, and I asked as many friends as I can to pray for Xinxin.I trust in Him and I believe in prayers.
Thank you all for your prayers, God answers our prayers.
Xinxin is well today. She had one egg, a piece of fish and a banana except the plain porridge.
Please continue to pray for Xinxin.
Wish everyone a blessed Mid-autumn festival
This is just the feeling I am having.I know God has the power to let us go through this path, even though the doctors told us Stage 4 neuroblastoma is hard to treat. God never asks us to give up and He encourages me, comforts me and carries me by sending friends to do everything for us. I know we are not alone and I am not feeling lonely at all.
Here I want to give special thanks to my friend--Emily, who is helping us in many different ways.She is now even write to Singapore airlines to ask for special discount for our trip to HK,
Yesterday, xinxin went to the KKH to see Dr. Chan, during the time, I met two children that made me couldn't sleep last night though I felt very tired. One is also a Stage 4 neuroblastoma, the three year old boy finished all his treatment last year, but relapsed within one year after treatment. And the parents decided to give up treatment , most probably because they don't want to see the child suffer any more. I didn't ask the reason, and I don't know what their real feeling is. The parents are quite nice and strong.
Another child is suffering blood cancer. But because the side affect of Chemo, he is paralytic.The mother is a very nice person.
I don't know how to express my feelings, one thing is my English is really poor, but even in my mother language, I can only write down it and tell you taht I feel very bad to see children suffering so much. Both parents are still strong enough to take it. Hope God is with them to comfort them at these difficult moments.And I hope those who read this will thank God to give us everything. When we are in trouble, think about the family with a cancer kid, nothing is worse than that. And if we are unlucky enough, be brave and face it.
Xinxin is still doing fine today. The whole day she stays at home playing games .
Thank you for praying.Please continue to pray for Xinxin.
We went to see Dr. Chan today and told her that our paper to HK is ready. She will email the doctor in HK and discuss the best plan for Xinxin. Thank God, everything is just smooth. Xinxin had the platelets transfusion today.
Today I met our Medical social worker-she is trying her best to apply help for us. Hopefully before we leave for HK, everythinging is settle.
Our date to HK is on Oct 1st so far.But haven't comfirmed yet,we will wait until next week to see xinxin's blood count first.
Please continue to pray for Xinxin. Thank you.
This morning, she went outside with the grandfather because I have to go the post office. And the other time of the day, she stayed at home do some drawing and played some games.Tomorrow we will go back to see Dr. Chan and check the blood count. Probably she will need platelets, so please pray platelets will be provided earlier. Last time, we waited from morning until night. Please pray everything will go smooth.
Tomorrow My medical social worker will also talk with me about the outstanding of our hospital bills. Please also pray for that.
Thank you very much.
All of us are very happy to see she is active at home. My husband even asked me why she could tolerate this cycle of Chemo.Before I could say anything, Xinxin quickly said:God healed me.My husband asked: How did you know? Xinxin answered:Even you are made by God. Do not worry, God has healed me.
Xinxin's answer is the best answer I can think of. what should we say except Thank God. Xinixn is just the reminder. Even in the afternoon,when I read the new book given by my friend Emily, she asked me if we were at the Garden of Eden, will I eat from the tree of the knowledge of good and evil? It was really hard, so I told her: I don't know and I hope I won't. But sephe told me, if we were there, she will remind me and she will remind the grandmother... Yes, God wants all of us become kids as pure as Xinxin who is His favorite. I want to thank God for sending Xinxin to me and let me know more than I can about Him.
Please continue to pray for Xinxin. Thank you very much.
This is the word I read today and it brings me so much comfort and I know it is Him to help me to pass all these with him holding my hands and give me strength. Thank you -God, I know I am not facing it alone.
Xinxin is fine today and we are at home. We will see Dr.Chan on Thursday.Probably she will need platelets on Thursday.But I want to thank all of your prayers, God listens. Xinxin can tolerate the Chemo much better than last round. All of us are very happy.Please continue to pray for Xinxin.Thank you very much.
The only problem is that her stool had blood. Actually on Friday, she had once already, and today three times, the doctors sent it to test, we will wait until tomorrow to know the result.I am quite worried,even xinxin is worried.Her prayer is: hope no more blood in my stool and I can go home early.And hope I can tolerate rice instead of porridge,
Please continue to pray for Xinxin. Thanks a lot.
Yesterday, the nurses took Xinxin's blood to send to SGH to test whether the Vaccination has been doing its job .Because this is an emergency situation, they only send a few patients. For those BMT patients, they also took their blood, but they gave them antibiotics as well. So the BMT patients blood result is not urgent, but Xinxin and other two patients' should send urgent to know the result. If it is positive, no need to worry. If negative, they can still give antibiotics today. (Today is the last day the antibiotics will work if it is negative, after four days contacting with the chicken pox patients,the antibiotics won't work and today is the fourth day)
The problem is that the doctor never tell me the result and until I went to ask the nurse in the morning. They figured out they forgot Xinxin, the worse thing is that they did not admit it. The nurse kept telling me that Shu Qin's situation is not as urgent as the other two.So they only sent the other two patients' blood for test first and they only trace these two first. It's really sad to see them telling lies.Making mistakes is not good, but if they try to arrange today and get the result today, everything is not too late.
The more we think, the more we felt sad. My husband asked them to ask the doctor to talk to us. The whole day, only the nurse talked about the problem with us.
So finally, they admitted they forgot Shu Qin, but they also said the result is not important, it is only for future use. We are really very tired to argue with them. It is too late to admit it, because they can only know the result next week,
Another thing is that the nurse forgot to wear gloves when she gave blood yo Xinxin through Port, which I did not realize until another nurse took blood with glove. When I asked them whether it is necessary to wear glove to give blood.Everybody just kept quiet.
I mean we felt thankful to have a lot of good and excellent doctors and nurses,Every time we came to the ward, Xinxin will receive presents from some of the nurses, which makes xinxin happy and we believe not every kids is as lucky as Xinxin.
The problem is that I hope they could do a better job on certain things.
Let's pray for Xinxin that no infection or Chicken pox will come to her. Thank you.
One nurse from Ward 76 who was doing night duties on Tuesday was diagnosed with chicken pox. So it is very dangerous for all the kids in Ward 76, and they only check the blood for Xinxin since she had the chicken pox Vaccination when she was 14 months. For those who never had Vaccination , they give them antibiotisc. But they put those who contact with the nurse saty in one room. I think it's not suitable to put Xinxin together with those who never had Vaccination . But the nurse told me, XInxin is quite safe, and I shouldn't worry too much.It seems they can not understand. Yes, she is quite safe, so she should stay with those safer ones instead of staying with those who didn't have Vaccination kids.
Please pray for all of the kids and th e nurse.
Today the pastor who I met in K-clinic came to pray for Xinxin.His name is Yeap. Tonight when I pray with Xinxin, her prayer is:hope my red blood cell and platelets will be fine and I can go home earlier.It's really sad to know that she also worries all these. For her age, she should only play and enjoy life instead of considering the sickness.
Anyway, we are happy to see Xinxin is fine today.
So please pray for Xinxin. Thank you very much.
Today Emily came to pray for us with her son. Did I mention that her son is fully recovered? He is just such a sweet boy. When Emily and I was talking, he just sat quietly and never interrupt us. We had a good time without Xinxin ( She is upstairs with the nurse, thank God, she gave me time to eat downstairs).
For Xinxin's paper in HK, still no result. My husband found out that they made a mistake. Even though we are holding the Chinese passport, but we will go to HK from Singapore. They figure out that at the last minute. So now they passed our application to another team. And we don't know how long it will take.But it made my husband very sad.My husband will write letters to them,hoping to get it faster.
I just want to thank God for his guidance for us to choose to do Chemo in KKH.
Please continue to pray for Xinxin.Thank you.
So praise the Lord, she is better now. Her chemo will last for five day.
My friend,Christina came to pray for Xinxin and passed her the real Warm clothes to wear in HK. My friends Chongho and Bee came to pass my husband a book to read. I don't know if he will really read or not. But I will read it. And they bought Xinxin some books about the Spot Dog which Xinxin loves a lot.It is just so nice to have all these friends to think about us and help us to go through this path. Thank you very much, my friends.
Please continue to pray for Xinxin. Thank you.
Do you want to listen to the good news or the sad news first.
Ok, let me say the sad news first:Xinxin was quite upsad at the noon time, so I leave the nurse to access the port(putting the needles to her port), she was not vrying when they were doing this as usal. But after I went in, I found they only put two three-way-tap there. So I asked the nurse why only three, because I remember last time they put three there, and they are going to give her the same protocol. Then the nurse-in-charge came to explain to me reasonally. I just ask them to check her last round of Chemo. Finally, they told me the doctor wrote the wrong protocol. Is it very sad that they did not know which chemo they will start for Xinxin.
The good thing is that God gives me good memory this time(I usually have very poor memory) to remember it and encourages me to ask before they started her Chemo( they only started pre hydration when I found out by myself). So God watches over Xinxin closely, he is not going to let any mistakes happen to Xinxin. What we need is just to pray.Pray for the wisdom of the doctors and teh nurses.
So please continue to pray.
The great thing is that Xinxin said a good prayer for herself before I started mine before she went to sleep just now. Her pray is like this: Hope I can go home soon and no vomitting and no fever. And I believe this is God's will also.
Finally I met my CCF social worker--she is trying to help us and still no result. She left a question for me-Is it too many people to look after Xinxin( me and my parents)?
If you read our Chinese Blog, you will know our MP-prof Ho and Mr.Ten Ming. They really concern Xinxin. Mr. Tan was really kind enough to use his own money to buy Xinxin six big tins of milk powder. He was surprised when he knows that CCF never helps us with any bills so far. He thought they are helping us with all the bills. And Our MP is going to write letters to them again and hopefully the application of our bills from CCF will have result soon.
I want to thank all these good people who really care about Xinxin and who are helping us and praying for Xinxin. What I know is that GOd will prepare everything for us, I just take care of Xinxin and pray for her.
Thank you very much. Please continue to pray.
Thank God that so far Xinxin is still sleeping.