She is still in pain.
Please pray for her.
Wish everybody a blessed month in the year of 2008.
Xinxin started to complain the arm pain so the dosage of the morphine seems to be not enough.
It seems her situation is not getting better at all. As parents, we really cannot do anything to help her.Please continue to pray for her.Thank you.
So please pray that after the two-week RT, her situation will be good enough.
Please pray at 11:30--12:00 as her RT will be done during this time every day except Sunday.
Wish every one a blessed weekend
Xinxin did the RT in the morning and looks very tired and had two times of naps during the day time. She had a blood transfusion as the HB is only 7.4. She is still on TPN and morphine. She was lying on bed the whole day and had diaper 24 hour a day as she cannot move herself at all.
Most assuredly, I say to you, whatever you ask the Father in My name He will give you.
Father, please carry Xinxin in your arms and heal her. In the name of Jesus, I pray.
Let's continue to trust in Him and and pray for Xinxin.
In the afternoon she did the radiotherapy which will last for two weeks. She was very cooperated as usual.
And she did a full blood court check-up today. Her count is still not good enough for the new Chemo therapy.
She is still on TPN and morphine 24 hours today. But thank God she is eating something now.
Dear friends, thank you very much for your prayers and your concern.
Please continue to pray for Xinxin.
It started in the morning that I asked the doctor why Xinxin is suffering without treatment and why Xinxin can not have the radiotherapy asap. But the doctor explained that actually they have already tried their best to book Xinxin to see the professor in RT, They called the doctor instead of book in the computer.
It's really hard to calm down seeing Xinxin has pain and crying. I felt bad about being angry with the doctor. The worst thing is that when the doctor tried to explain Xinxin's situation later, I told him that I hate Neuroblastoma. The doctor seems to understand me and told me he also hates it. Isn't it funny that I didn't know what I was talking and answered Question A while the doctor was asking Question Z.
The doctor tried to tell me even with the treatment, it's hard to cure. I told him we will let her try every treatment as long as there is still a treatment. .
After the talk with the doctor, I asked Xinxin to pray for herself a cure. She told me can Jesus bring her home instead of staying at hospital, It's painful to listen to what she told me. But I still told her :"Jesus wants you to stay here because He wants the doctor to heal you."
The hospital chaplain came to see us and pray for Xinxin-- arranged by the nurses as they can tell I am extremely frustrated.
Xinxin is going to do the RT tomorrow morning 10;20. Please pray for her.
Thank God we got the Internet today finally.
Thank you for your concern.And I am sorry for not replying your emails and messages.Xinxin's situation is getting worse .She is on Morphine 24 hours a day and still needs to add the dose every day. She is also on TPN started from last Thursday. But she started to take some noodles and the tummy is better.
As for the treatment, we discussed with the doctors, and decided not to do the surgery for Xinxin first. we want to try the new chemo first.The 3F8 treatment did a great job for the bone disease. Her shoulder is no more swollen and only the leg is very pain.The doctor will do the radiotherapy for the leg first. But we need to wait for her turn for the radiotherapy although they sent her case as urgent.
And we are waiting for her count to be good enough for the next round of Chemo.
She had fever started from Saturday and is on antibiotics.So we are still keeping the hope although the doctor told us to get the worst preparation.
let's just pray the best for Xinxin.Thanks.
High stage Neuroblastoma is really so aggressive and dangerous, the doctors in KKH of singapore and QMH all try their best and never give it up, Dr Shau-yin HA told us they will have group meeting next Monday to review the illness situation and make the treatment plan together with other doctors.
So many friends shown their great concern on little Xinxin, your kind words and email encourage us.
Winter is really coming.We feel very cool at night , and the daddy even caught a cold. But Xinxin has enough warm clothes bought by a few friends before we came to HK, so do not worry about Xinxin.
The daddy and the grandparents went to Shenzhen to buy some quilts and clothes. Xinxin and I had a good time at home enjoying cooking and eating by ourselves and made the flat a huge mess without being scolded by anyone. Ha ha. With the painkiller, Xinxin grasps every second to enjoy life, which makes us to be strong also.
Thank God for holding Xinxin to go through all these.
Please continue to pray for Xinxin. Thank you. Wish you a good week ahead of you.
Have to wait when the daddy is free and is willing to help but don't know when.
Xinxin is having good appetite at home. She is eating well but still complaining pain as long as she stays at home. So we brought her out a few times to distract her.
"Father, I will not allow the devil to rob me of my daughter-Xinxin's health. These blessings are blood-bought and paid for by Your Son!"
Please continue to pray Xinxin. Thank you.
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.
So far now, every thing is ok, 3F8 is different to Chemo, no any side effect during treatment. The first cycle treatment will last for 5 days, Xinxin may back to home on this Sat.
Thank you for all your concerns to Xinxin.
The doctor in charge of Xinxin came to ward everyday, and told us he will try his best to cure Xinxin, and tomorrow Xinxin will begin the 3F8 treatment protocol, so far now, it's a miracle on the world for those neuroblastoma, because it greatly improve the cure rate of high risk neuroblastoma. pain is the main effect, but that means the anti body is attached to neuroblastoma cell and kill it, thanks to Dr. Godfrey Chan, he is a so kind and professional doctor, he told us many new treatment methods are arised in US, if necessary, Xinxin can take it.
It's really grateful to Dr.chan for accepting Xinxin to admit into Queen Mary hospital HK, a famous hospital on the world.
It's cold in HK now, not like in Singapore that every day is in summer, so we begin to buy some
clothing for us, thanks to all of you, some friends in singapore have given the winter clothes to Xinxin before we left singapore, so we don't worry about that for Xinxin.
The following 3F8 treatment will last for one week, xinxin's mummy will stay in QMH for one week and maybe can't update the blog everyday. Please continue pray for Xinxin and thanks for all your comments and consideration to us.
Thank you so muh.
xinxin's mummy can't update the blog because no internet in new ward.
Thanks for all your concerns and pray to Xinxin.
We are still in QMH as Xinxin is having fever(around 39.2) and she is on the oral antibiotics because the doctor didn't think her fever is because of infection but her cancer cells. I agree with the doctors because her White Blood Cells is 6 and NEU is 4+. Her shoulder and neck is very painful.
But despite of her fever, they started the Chemo for her and she vomited some watery things since she didn't eat anything today.
She did have a good time in the afternoon with the CCF member.
Please pray that she will be better tomorrow. Thank you and wish you a good weekend ahead of you.
We admitted to Ward C6 today because Xinxin had fever in the morning. Her neck and shoulder are very painful. The doctor thinks that both the pain and the fever are from her disease.So she is not on any antibiotics, just stay in the hospital to be observed with the pain killer.
Her doctor-Dr.Chan is really a good doctor--he is trying his best to save Xinxin's life instead of telling us that there is no cure.I am thankful that Xinxin is under such a good doctor.
The great news is that her platelets is good now(96),so she will have the chemo tomorrow and after that if no more fever, we can go home and come back next Monday for the antibody.
Please pray for the wisdom of the doctor to make the best decision for Xinxin, thank you.
Xinxin wake up very early, so we went out for a while before breakfast. And she enjoyed in her stroller.
She started to complain the arm pain and the shoulder also. So it is confirmed that she is having pain. I guess we will have to wait until we go to the QMH on this coming Thursday for the Full Blood Count Check-up.
Please pray that her counts are good enough to start the chemo and pray the new Chemo will help to clear the cancer cells in her small body.Thank you.
'The LORD bless you and keep you;
the LORD make His face shine upon you
and be gracious to you;
the LORD turn His face toward you
and give you peace..'
Xinxin started to complain arm pain today, which I didn't know if she was telling a lie because she likes telling lies from the past few weeks. Let's pray it's nothing to do with her disease.
Xinxin went out with the grandfather in the morning and came back late for lunch because they went to a wrong building, and they tried to open the door and thought I was kidnapped in the room.The funny thing is that they don't have the Pin for that building and the gate clerk opened the door for them and told them he didn't see the Mommy when they asked if he saw me.
In the afternoon,we went to a park and have a good time there.
Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."
Please continue to pray for Xinxin. I firmly believe God has a reason for Xinxin's situation and He has the power to heal her.
Xinxin is very happy and we went to the seaside with the strollers.
Please continue to pray for Xinxin. Thank you.Wish everybody a good week ahead of you.
So we went to the park and had a great time.
Xinxin's hair is growing which I don't think it's a good sigh.
Please continue to pray for Xinxin.Thank you.