Thank God that Xinxin'ts leg is better. Let's pray after next round of the chemo, her leg will be normal and so we can bring her to the Disney land soon.
We are very busy with all the things (10+ luggage) in the new flat. And I am wondering how we can take all the things from Singapore and still need a lot more things to buy.
Our new flat is quite tiny compared to the one my husband's company provided. The bedroom is really a bedroom because you can only put one bed inside.But we thank God for providing the good condition with the reasonable price.
Please pray for Xinxin and for me- In the last past few days I threw tantrums very easily to everyone in the family,I feel bad about it, but it seems I cannot control myself every time.Thank God that the families are very understanding.
Wish everybody a good weekend and a wonderful month ahead of you.
We went to the park twice today,because it is really very nice and Xinxin enjoyed so much.She even told me that she doesn't want to move to the new home,because she wanted to go to the park everyday.
Tomorrow Xinxin and I will go the QMH to have a Full Blood count check up to see if her count is suitable for the chemo on Friday. And the grandparents will move all the things with the daddy. We probably cannot update her situation for a few days because we don't have the Internet at the new home yet. I will keep you updated once we get the net.
Please continue to pray for Xinxin.Thank you.
Thank God, Xinxin is still doing fine. She can sleep one whole night without complaining leg pain. Her appetite is still great but cannot tolerate many things.
Today we went to a new park near where we live.It's a very nice and big park. We enjoyed a lot.But we didn't know it before, a neighbour told us when we were downstairs yesterday. Tomorrow we will take some photos in that park. What a pity--we are moving on Thursday when Xinxin is in the hospital, which is easier to move without her disturbing.
Xinxin had a three-hour nap and that's why she is still playing with the daddy now at 11pm.
Please continue to pray for Xinxin. Thank you.
The weather is warm and Xinxin's leg seems to be better, she won't complain unless I touch her leg.
We went downstairs for a while and we did some coloring and Art &Craft at home today instead of watching videos as the granny noticed Xinxin's eyes are not as Big as before.
We are moving to our new flat soon, so the grandparents are quite busy packing. And Xinxin is quite excited about moving to the new home.
Please continue to pray for Xinxin. Thank you.
We went downstairs for a while to have some sunshine. The weather today is quite warm here in HK. We had a good time in the sun.
Xinxin had a nap in the late afternoon.She is still having very good appetite.
Please continue to pray for Xinxin,thank you .
Wish every body a good week ahead.
Please continue to pray for Xinxin,we appreciate your prayers. Thank you.
The doctor explained that the leg pain is because of the cancer cells spreading to the leg, so we are back home with more pain killers after a blood transfusion .I am happy the doctor never talk about the quality of life which I think saving a life is more important right now.
I believe if God wanted us to give up, he will never guide us to HK for the better treatment and won't send so many angels to go through the difficult times with us. He has a good reason for the results.Let us just do not give up.
Wish everybody a good weekend.
Please continue to pray for our sweetie- who is suffering from the leg pain.Thank you.
Tomorrow we will go back to QMH for an ultrasound of the tummy and blood count check-up. From the experience, I think Xinxin will need a blood transfusion.So we will come back in the afternoon if the doctor think her leg is OK to go home. She is really suffering from the pain of the leg. I can not touch it at all. Even she was lying down on the bed, she can not turn herself, and I can't not help her.
What I can do is to ask her to be patient and wait until next round of Chemo to kill more cancer cells.But the doctor can not tell the reason of the pain now, I'd better highlight it tomorrow. The pain is behind the knee but I can not touch the whole leg which is swollen.
God, please use your healing hands hold Xinxin's leg and heal her.In Jesus name I pray.
The good thing is that she kept telling me what she will do when she feels better, and she is planning a trip to Disney land when we move to Qingyi next week, which is very near to Disneyland. After considering many things, the daddy decides to live in Qingyi which has a better environment, but still quite far from QMH.
Please continue to ray for Xinxin.Thank you.
Now she is tired of egg and dumplings, she likes porridge again.
In the afternoon when I was cooking for her, she called me suddenly and told me that she is going to be alright at the age of six which is still two years to go. From the time when she was diagnosed till now, it was like a life long time already. I definately want to to be healthy asap.But if in two years, she can be completely cured, I am willing to do anything to help her.
Please continue to pray for Xinxin, It's so unfair to let her suffer so much, which I can not figure out the reason. But I believe God is holding her hands to let her go through all these.
Please pray for her.thank you.
Please continue to pray for Xinxin. Thanks you..Wish everyone a good week ahead.
We are back home now. Xinxin finished her Chemo(only four hours).
She is very tired and vomited once. She is still complaining leg pain. It's hard to tell the reason, but probably because of her disease. I recall that she actually had the problem for two weeks already--after we came to HK, she seldom walks.I think she just dare not tell us, because she is scared to the hospital.
Now, every time we go to QMK, i will have to talk to her for a long time and for several days.But she usuall will cry and cry for a long time, and finally asks me how long she will have to stay.There is some difference between two hospitals. In QMH, only the parents can stay with the kids, so my father will wait outside the whole day until Xinxin finishes the home cooked food and brings the container home and comes back the next day. And we don't understand the language here at all. And the parents are not allowed to eat in the ward and can not use the restroom. So We have to get used to the changes. Cure her is the most important thing.
I finally figure out the money of the two chemo drugs is 3650 HK dollars. So it's better than 10,000.
Thank you for our prayers. I don't know how to express my feelings. I am very sad seeing Xinxin's stubborn disease, but I won't give up. Please pray for the cure of Xinxin.
The daddy called the ward and they wanted us to send her to the ward. But I emailed Dr. Chan again to ask for his opinion. Actually, I can aslo call him, but I just hate to disturb the doctors by calling them, because they are really very busy. I emailed him to explain the situation and hope he can find the results of the MIBG and bone scans.
Thank God,he called the daddy and emailed to tell that they got the report of the scans and the plan is to start her on 2 cycle of chemotherapy (gemcitabine and oxaliplatin) and add antibody probably at the second course then see the response. And we will admit tomorrow instead of Oct29 as planned. So we are all happy about that.I had to talk to Xinxin about the admission to let her also get prepared.
The 2 drugs that Dr Chan prescribed are new drugs that are not provided by the Government. It will cost around HK$7800 for gemcitabine and HK$2200 for oxaliplatin for one course as they remember, but Dr.Chan is not sure about the price, The quotation was based on the previous patient's information and there may be some difference as of now .
Please continue to pray for Xinxin. Thank you and wish all a relaxing weekend.
Xinxin is still complaining leg pain and even bringing her to the toilet is a problem-I don't know where my hands should put. Other than that she is fine with good appetite as usual.We brought her downstairs twice today to have some sunshine. She enjoyed a lot and even went to the playground to play the slide for a while.
For her tummy, the nurse called me to tell that she will have an ultrasound on 24th of Oct. Since QMH is a government hospital, so everything must book earlier. So the date is actually quite fast. Some patients even wait for more days.
My friend-Mimi from Singapore went to QMH to see Xinxin, but we are at home. So I think I'd better put my phone number here in case anyone want to contact us.
So far my cell phone is 63791674. I will probably change into another number, because we have found a cheaper one. But I will update when I have a different one.
Please continue to pray for Xinxin. Thanks a lot.
I guess let's just pray for either Xinxin will be protected or the doctor will ask us to meet them as soon as they got the results and have a plan for Xinxin.
Xinxin is fine but started to complain the leg pain, and she can not walk properly if she walks. Actually she seldom walks at all, even when I carry her, she will scream if I touch some parts of her right leg. I am worried, and don't know what's wrong with her leg.
Please pray for that and pray for the wisdom of the doctors to make the best plan for Xinxin.Thanks a lot
Yesterday we admitted to QMH in the afternoon. And she only had the injection for the MIBG scan.
Today is her first day for the MIBG scan which lasted from10am to 1:30 pm. The doctors were impressed by Xinxin. She is really good to control herself. She just stayed still without sedation.
Tomorrow we will have a shorter time of the same scan again.
For the tummy, the doctor will book an ultrasound for her.
And we met her doctor, also Dr.Chan-who is also a really good and kind doctor. And his plan for Xinxin will probably be like Chemo+MIBG treatment,+ 3F8 antibody.The MIBG treatment and 3F8 is the best treatment in the world for neuroblastoma. So far in the world, there are only two hospitals provide 3F8, except QMH, the other one is in New York. The 3F8 in QMH was also bought from USA. Before we came to HK, Dr. Chan was not very willing to let us try 3F8 since it is very limited.So we thank God to let Dr.Chan change his mind suddenly.The details of the plan will come out when Xinxin finishes her scan this Friday.
Please continue to pray for Xinxin.Thank you a lot.
Xinxin is having very good appetite as usual.She kept asking for food the whole day.I don't know why she is still so skinny. Today the daddy brought her downstairs in the morning for a little while and she was very tired. And after that she stayed at home playing computer games the whole day. The daddy went out to look for a suitable flat for us.
Tomorrow we will go back to ward C6 in QMH to have the injection for MIBG scan. It's a ;ittle different from that in GSH in Singapore. The scan in SGH will be two days and three days after the injection. And here in QMH, the scan will be done one day and two days after the injection. And the Iodide here in QMH is white color and taste sweet, which is much easier for Xinxin.
Please continue to pray for Xinxin.
Wish every body a good week ahead of you. Thank you all.
Thank God, The friend sent the needles to us today.It's really nice of her-Janet. So we can bring them to QMH next Monday when we admit again.
We had a very good day at home.The weather is just nice not cold, but cool. It is a bit hot today.Xinxin wears her favorite dress and went to a park near where we live.It's very nice to see the turtles again. In Singapore, there are a lot of turtles, I thought we would miss them here in HK. The cleaner even picked up a tiny one for us to see.
And today for the first time in my life I saw the banana trees. Xinxin was also very excited to see them too.
The daddy went out to meet a friend and after that he went to see different flats around HK island. The flat the friend provides is very far(43km), it's not very convenient for us. But a normal flat near QMH is quite expensive. So far we live in the flat provided by my husband's company. We will move out before Nov.2nd.Please pray that we will find a suitable flat.
And pray for Xinxin. (Her tummy looks quite big). Thank you.
We are home now. Xinxin is so happy to be at home and missed the home cook food a lot.
Today she did a bone can and the result will be out next week with the MIBG scan together. From the screen, I can tell that the right leg is still abnormal.The bone scans in KKH were normal even when she was diagnosed.Only the MIBG lighted up for the bone.And the doctor in KKH explained that MIBG is more accurate. She is scheduled to do the MIBG scan next week. We will admit to ward C6 next Monday for the injection of MIBG scan and the scan will be done on Tuesday and Wednesday. Please pray for Xinxin.
The needles for Xinxin's portacath are already in HK now.My friend-Emily's friend-Janet called me in the afternoon to tell me that she will send the needles to us tomorrow. Thank God.
Tomorrow my husband is going to meet a friend in a Church. Because he needs to meet the friend and the friend is only available at church at weekend.
Everything is just fine. Thank you so much for your prayers.Have a blessed weekend.
Xinxin is still doing great. (even one doctor here mentioned that Xinxin is so strong after so many rounds of Chemo).We admitted to ward C6 yesterday and they asked us to an x-ray for nothing just because they want us to do every test again and they want to have a better understand of Xinxin. Today she did a heart ultrasound and a hearing test. Thank God everything is normal. That means after ten rounds of strong chemo, her organs are all normal. Even her hearing(high frequency) used to have problem after eight rounds of Chemo. And today they gave her a very detail test. The doctors were impressed that Xinxin was so patient to cooperate and clever to consentrate for half a hour. She had to show reaction to the sound she hear. Thank God for the healing hand on Xinxin.
For the needle of her port a cath, it's already settle. My friend, Emily bought a box of the needles and passed them to a friend who is flying to HK tomorrow. Thank those who helped us in doing these,and thank God for making it arranged.
Yesterday at 7pm plus, a doctor came to talk to me that they wanted her previous slides of biopsy and bone marrow as soon as possible. I was quite worried, one thing is that KKH will not release. Before we came to HK, they didn't give me the films when I was willing to pay. The other thing is how to get it?
I asked my husband to call my friend --Emily to see how(My cell phone won't have enough money since I was in hospital). I know a lot of friends are also doing help later by Emily's emails, and I want to thank these friends again for helping us, like ChongHo-he is always a great helper and the doctors and nurses and my friend,Emily who is spending a lot of her time and money in making it.I didn't expect it would settled so fast, but with God's arrangement and friends help, it is just a miracle.
.Please read the letter from my friend Emily to her friends, and see how the miracle was made:(in her letter she mentioned a doctor-Dr. Ha, he is the only senior doctor came to see Xinxin when Xinxin's doctor was out for a meeting, so he knows us as God planned to let Dr.Ha knows us before he went to Singapore to have the conference)
Please continue to pray for Xinxin, nothing is impossibile. We trust his healing hands in contraling everything.
Emily's letter to her friends
God answers prayers and He is so wonderful. Yesterday after I sent out this mail, I was rather worried. In such a short time, can I get the sample which I later came to know that they are slides of her previous biopsy and bone marrow. Will KKH released these slides?? Joy shared that for films, they don't even release even though Joy was willing to pay. How should we handle these slides? Are they "live" samples that need special care and immigration rules might apply. Maybe we need to FedEx them or what? God even promptly me that my own brother is flying to HK this Sun and later this morning, another friend informed me that her sister is flying back to HK next Wed. So I have a few "delivery options" but I don't know much about the slides, whether KKH is willing to release. Immediately last night I called the Ward and asked if Dr Chan will be doing her round this morning so that i can ask her. They asked me to call back at 10am. With that, I prayed and learnt to leave the whole matter to God to guide and arrange.
In the morning, the ward nurse told me that Dr Chan is hosting a conference and is very busy. That explains why she did not reply to QMH's email for the slides. So the medical officer and houseman (Trainee doctor) helped out tremedously. First I convey the required slides (luckily Joy sent me the email that QMH sent to Dr Chan) to the houseman Dr Siew. Dr Siew then conveyed QMH requirements to the medical Officer (MO) who will be meeting Dr Chan at the conference and seek her approval. Dr Siew said she will call back on Friday.
In the afternnon, Dr Siew called back and said Dr Chan approved the release but we have to make payment first. Later she was so nice to trust that as long as I verbally agree to make payment, she can ask the Lab to go ahead with the processing. Usually for everything, KKH need you to make payment first before they process, so this is an exception. Altogether there are 18 slides and likely to collect tomorrow. Wow 18 slides, how is my brother going to handle that. Dr Siew gave me another option which I suppose is from Dr Chan. There is a Dr Ha from QMH here in Singapore attending the same conference as Dr Chan. So tomorrow when the slides are ready in the afternoon, the MO will collect from the lab and bring it to Dr Ha via Dr Chan and Dr Ha will fly back to HK on Sat. As a doctor, I am sure he/she can handle these alides better or at least be able to explain to the immigration if questioned. I just need to bring down the payment to Ward76 before noon tomorrow.
A dear friend of ours and also a dear friend of Joy and Xin Xin called me last night and offered to bear the FedEx costs if necessary. He also agreed to pay for the slides when I sms him the outcome. What's better is his niece works in KKh and immediately, he contacted his niece and she went to ward76 to pass them the payment. Everything went so smoothly that you wonder if s special power is at work. Yes, God answers prayers.
Actually this morning, another friend of mine also called to highlight the likely problems with bringing the slides out of Singapore and also offer to help finance the courier costs if it needs to be sent by FedEx. At that time I still don't know if they are live or dead samples. Later Dr siew assured me that the slides are "dead" and don't need any special handling except that theya re glass and hence fragile not any special immigration approval. In the morning when I spoke to my friend, I did not share with her that with so little information, there is really nothing much we can do but just leave it to God which is what I was doing the whole morning. My role is just call here and there and coordinate everything that God has already put in place.
Hence, this is really great! God is so good....God is almighty....Let us learn to pray and leave things that is out of our control (an even those within our control) to God's plan and guidance....Halleiluya!!
Thanks for your prayers in this matter. Without them, nothing is possible. We also thank the many people who contact me to help...thanks a lot! Thank you ward 76 nurses and doctors.....Thank you Chong Ho.....Thank you GOD!!!
Let's continue to pray... that the slides will be ready as planned by tomorrow... the MO can deliver on time to Dr Ha....bless Dr Ha with smooth flight back to HK and the slides are all safe and intact....QMH receive them safely and make good use of them to access Xin Xin's condition and come up with the best treatment plan for her!!! Emily
Tomorrow we will go to QMH to meet her doctor-Dr. Chan(the same family name as the doctor in HHK, but different doctor). He will come back from the meetings. And we will probably know the plan for Xinxin.
Let's just pray for Xinxin.Thanks a lot.
I may not update tomorrow if I do not bring the laptop to hospital. Here in QMH, everything I have to prepare by myself. Like the quilt for myself at night, and tissue paper, all these things we can not order from hospital and there is no place to buy in hospital.Even Xinxin's snack, I have to prepare some also. So we will have a lot of things to take.
I want to thank my friend Emily who is trying different ways to get needles of the portacath for Xinxin since ward 76 can't sell it to us. And our doctor friend-Mr. Chui also tries to help us on the needles. My friend Pat is also concern about it. So do not worry, with the help of friends, it's going to settle.
Today is Xinxin's 4th birthday. We didn't celebrate it.But we did sing her the birthday song.How I want to send you the photos of her. She looks quite healthy.But the camera was broken, we will have to wait until next month's pay day of the daddy.
Xinxin was born in China on Oct.6th,2004. She was having a very normal and happy life during her time in China. On Oct 13th, 2006, at the age of two,we went to Singapore. She started her life in a different country, and she enjoyed quite a lot of the summer time all the year round.
One day after her After her 3rd birthday, she started vomiting and having low fever for 20 days. And two months of her 3rd birthday, on Dec 8th,she was diagnosed to have childhood cancer called NEUROBLASTOMA. And on that day I met my friend Emily, our life changed from that day on.
This year oct.2nd, we came to Hongkong for the treatment with God's plan.
Looking back the last ten months, we are blessed to have sooo... many friends to help us go through it.I apologize for not being able to name all these friends.Let's praise the Lord for making it.
No one knows what will happen tomorrow, so let us just treasure the day we are having now.And we know god has a very good plan for us. Do not worry about tomorrow.
Please continue to pray for Xinxin. Thank you.
It was raining very heavily in the morning, so we had to stay at home.
Xinxin's appetite is as good as before-kept asking for food. Now she loves noodles very much instead of porridge. In the afternoon, we brought her to the playground downstairs and she had a great time. Tomorrow she was supposed to admit again, but the daddy called the ward to ask if we could go on Wednesday since Tuesday is a public holiday and her doctor-Dr. Chan is coming back from overseas on Wednesday. But we can only know the result tomorrow morning after the nurse discuss with the doctors.
Since the daddy is working tomorrow morning, Xinxin is sleeping very early today, but she complained the left leg pain after almost fell asleep. I will have to observe first.
Please continue to pray for Xinxin, thank you.
Wish everyone a blessed week ahead of you.
We admitted to C6 yesterday morning, since the ward told us to get there asap. But they only review her history of treatment and did A LOT OF BLOOD tests. And I had to go to the Immigration department in the afternoon to get my HK IC ready.(the appointment time is in the morning) Xinxin was staying with the grandfather in the ward.( I need the daddy to help me, since it's the first time for me to come to HK, the daddy is holding an HK IC)
Thank God, my IC is also very smooth.After I got everything done, I came back to QMH, the grandfather was crying outside the ward, Xinxin was crying inside.Xinxin missed me a lot, and didn't want grandfather. And because it's her first day here, she didn't want the nurse at all. If in KKH, it shouldn't be a problem, all those nurses are just like her friends.
The good thing here is that Xinxin is trying to eat the hospital food now. At lease she can have something before her home-cooked food come to the hospital.
The only problem, we met here is that we need her Portacath needle from Singapore. The kids with cancer here never use Portacath, they use lines instead of Portacath. We bought the Portacath needle for Xinxin, they only have one size, which is too big for her here. Thank God that one of the nurses in QMH( I never met before) will go to HHK next week. And she is willing to help us to get the needles from KKH if they are willing to give her. And I will have to confirm with the sister in ward 76 to see whether they can let us buy 20 at a time. Please pray for that.
Xinxin went home with the needles today for Home Leave since it is weekend today. In KKH, it will not be allowed to go home with the needle still on. But... the doctor asked us to go back to ward next Monday. Xinxin's doctor is out for a meeting now, so the final plan is not known yet. I think she will do the MIBG scan soon and harvest first before any treatment.I will update when I know more. If Xinxin admit, I might not update, but do not worry about us, we will be just fine.
Thanks a lot for your prayers.
Today has no any treatment in QMH, only different level doctors come to check xinxin and asked some questions about the treatment in KKH, the same as in Singapore, the service from doctor and nurse are very gentle and professional, but the hardware of ward is not as good as KKH, when xinxin heard here also has CCF(children's cancer foundation), she want to play in side, but unfortunately here doesn't has one playing room for child, only can rent some books or toys from them.
Eating here is more expensive than in SG, maybe more than double the price and we don't have enough choice. Also we can't rent one laptop in QMH, because XinXin is under 7 years, we can take our laptop to ward, but we can't use their electric source in ward, we can't eat any afforded food from QMH for baby if they can't finished it.
Joy has applied the HK id card this afternoon,for Children under 11 years can't get one ID card, so XinXin will take her passport for admission to QMH all the times.
Joy will update more when she can get into Internet.
Thanks a lot.
Xinxin was supposed to admit to Ward C6 in QMH tomorrow morning. But we have booked to confirm our IC tomorrow 11am, so we will call the ward tomorrow morning to see if we can go to ward in the afternoon.
Please thank God and continue to pray for Xinxin. Thank you.
We had a very busy day packing, and it's still packing.
The daddy is very busy as my duty is only to play with Xinxin to let her not disturb the packing. Xinxin is fine today but had five times diarrhea. Please pray that it will be better tomorrow.
My friend Emily came to pray for us with her family and passed us the long john sent by Daisy.
In the afternoon, my friend Irene and her whole family came to pray for Xinxin and Xinxin was spoiled again with the gifts--very nice and warm clothes. Later you will see them in her photos.(By the way, our camera was broken, so I can not post her photos now )
At night, my friend Xiu Zhen came to see us with her two girls.
I want to thank God for sending so many good friends to kept helping, praying and spending their own time with us.
I will try to update tomorrow when we arrive HK if we have Internet at where we live.
Please continue to pray for us. And do not worry about us because God will be with us. Thank you- my friends for you support, I may not be able to thank you one by one, but God knows and we will remember you in our hearts.