Dec 31, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 21

Adrian's Neutrophils level went back down to 0.26 with Platelet only at 19. He received 2 units of Platelet and the GCSF shot resumed. His diarrhea seemed to have come back and baby is once again suffering from the red bum. It's only 21 days post transplant afterall....

Our lives have not been the same ever since Adrian was diagnosed with NB early in 2007. We feel so blessed to have so many people care about us. Even people who do not know us that well are stepping up and offering love and support to us. We cannot tell you all how thankful we are and hopefully 2008 would bring us better luck and good news! Happy New Year!

Dec 30, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 20

As expected, Adrian's Neutrophils dropped today at 0.63 after doc has stopped giving him GCSF shot.

Dec 29, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 19

After 6 days of GCSF shot, Adrian's Neutrophils level is up to 2.00 today surpassing the benchmark of 1. Since he has had 3 consecutive days of Neutrophils level above 0.50, doc has concluded that his Neutrophils have successfully engrafted!!! No more GCSF shot and we anticipated a drop in his Neutrophils tomorrow. Mama has been feeling sick in the past 2 days and it got worsen today. She got sent home in the afternoon and Papa became the primary caregiver from now on....

Dec 28, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 18

Adrian's diarrhea situation has improved quite a bit though he still has 4 - 5 times of loose stool a day. The stool that we sent to the lab in the past 3 days has shown a negative which means baby is clear from the bacteria, so one less antibiotics to take from now on. It's a busy day as Adrian needed both blood & platelet transfusions today. Neutrophils is up again at 0.76 and GCSF continued. Had a conversation with the nurse and apparently Neutrophils is only one of the major components in body's white blood cell. It's considered stable when it reaches 1 or above. However, there's other components in white blood cells may take longer (up to 1 year) to grow back to normal which equate to a weak immune system for at least a year!!!

Dec 27, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 17

Adrian graduated from the official BMT unit and moved to a new isolated room early this morning. This isolated room has double door (you have to close the first one before opening the second one) and it's a lot bigger with its own private bathroom!!! It's no less than the previous room as both rooms use different air filtration system to ensure air is clean. Baby's Neutrophils is up at 0.54 today and doc has stopped his TPN today!

Dec 26, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 16

Adrian is overwhelmed by all his new toys he got from Christmas! He enjoyed reading the new kiddie books, playing with the blocks and most of all his all time favorite pony-ride!!! Mama, however, was busy packing this afternoon as we were officially informed that we'll be moving to another isolated room tomorrow. Adrian still has diarrhea 4-5 times a day - which is a lot better than last week. He's less fussy at meal times as well so maybe the TPN will stop in the next day or so. Neutrophils went up again at 0.49 with the help of the GCSF shot.

Dec 25, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 15

Neutrophils is up to 0.36 and the GCSF shot continued until Neutrophils reaches 1 as per the nurse. On the other hand, Adrian received 2 units of Platelet transfusion today. A group of Paediatrics' doctors all dressed up and some even brought along their kids to be the Christmas Carolers to bring smile and presents for the sick kids. Maybe Santa thinks Adrian is good & behaving this year.... Baby was being spoiled with gifts!!! Thanks to everyone who thought about little Adrian in this holiday season. Mama & Papa (with the help of the grannies) also bought something for Adrian and he'll see it first thing tomorrow morning, on Boxing Day!

Dec 24, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 14

After having the GCSF shot yesterday, Adrian's Neutrophils level is up to 0.09. The shot continued today. Baby is still on TPN to make up for his poor appetite. Otherwise, he's all good! The ward got pretty quiet towards the evening as doctors had sent a lot of kids home for Christmas. We, however, were being left behind.... This would definitely be the most special & memorable Christmas for us all!!!

Thank you for walking with us through this.... We hope you each have a wonderful Christmas and Happy Holidays!

Dec 23, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 13

Neutrophils went back down to 0.04 and the doc has started giving Adrian the GCSF shot to stimulate the growth of his bone marrow. Baby still has diarrhea 5 - 6 times a day, however his bum is getting better now.

Dec 22, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 12

Adrian finally developed the long awaited neutropenic fever this afternoon. Blood was drawn for culture and the doc has immediately started 2 anitibiotics on him. His Neutrophils has moved up a bit more at 0.11 but his platelet count was low at 15 for which he received another 2 units of platelets today. Almost 2 weeks after the intensive chemo, Adrian's hair has started to fall off. We suspect the mucoscitis is on its way as Adrian used to enjoy teeth brushing and now hated it!!

Dec 21, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 11

It's the 3rd day in a row that Adrian has had some pretty bad diarrhea. He refused to drink water or soup today and doctor has finally started TPN on him which would hopefully help to maintain his weight (his weight dropped to 10.15 kg). Blood result showed that his Neutrophils moved a bit to 0.04 with Platelet at 27. With his counts so low, it's somehow difficult for him to get well on both his bum and the diarrhea situation. Mama bought a cream recommended by the nurse to put on baby's bum and we tried to keep him naked as much as possible so the air could dry it out.

Dec 20, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 10

Adrian was completely exhausted and had the best night sleep ever in the isolated unit last night. He continued to have diarrhea today but not as serious as yesterday (approx. 5 times vs 10 times). After receiving 2 units of platelet transfusion yesterday, his platelet went back up to 45 but Neutrophils hit the new low of 0.01!!! One temperature spike was recorded (38.2 C) - though we are expecting fever to develop any time now with the low counts. Not much improvements on his red bum and we are hoping it's not going to get worse as baby will be in big trouble if infection develops. Not sure if it was diarrhea that's bothering him or he's fed up with the hospital food, Adrian was on strike! He's only willing to take fluids like soup, water and maybe rice water at most. Big headache for Mama....

Dec 19. 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 9

It's been a busy day for both Mama & Adrian. First, the stool sample test result came back positive indicating some bacteria was found on baby's stool. Adrian was given antibiotics to combat the intestine illness and yet, he suffered from severe diarrhea in the afternoon. He literally had diarrhea continuously and Mama needed to change him every half an hour in order to keep him clean & comfy. Needless to say, baby's healed bum has turned all red again and it hurts so much whenever Mama was trying to wipe him clean at each diaper change. At the end of the day, Adrian didn't eat well nor even napped. He got so tired that he passed out at 19:00. While Mama was wondering if he's going to wake up again later at night, he woke up around 20:00 and had diarrhea again!!!! Adrian then had about 7 oz of rice water as recommended by the N.O. as the natural remedy for diarrhea as well as hydration.

Dec 18, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 8

Adrian received blood transfusion today with HGB at 7.8 only. His neutrophils remained low at 0.04 and Platelet at 23. Despite the low count which would normally cause tiredness, Adrian only slept 8 hours in total the whole day! He seemed to stay awake at night waiting for Papa to come and pat him to sleep. The ward was busy today with different groups visiting the kids including the Red Cross & staff from HK Disneyland. There's also a bunch of Christians who came in the evening to sing Christmas Carols. It's amazing how many gifts Adrian has received to date. Though they are not pricey, but the thoughts are priceless.

Mama posed with Ronald (Mr. MacDonald) at the Party hosted by Red Cross right outside K8N at QM.

Dec 17, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 7

It's been a week since Adrian had the Cord Blood Transplantation and his Neutrophils has hit the new low of 0.02, Platelet at 41 and HGB (Haemoglobin) at 8.2. Mama requested to have the IV back on for Adrian since he didn't eat well and still had diarrhea few times a day. Doc said we may have to move into another a "double door" isolated room in the next day or so to leave our current room vacant to accommodate another patient. Children Cancer Foundation played Santa today and distributed balloons & gifts to the kids in the ward. Adrian missed the chance of seeing Santa again as he was napping. We were told that there'll be more to come until Christmas. We are really grateful for all those people/donors who thought about the sick kids in this holiday seasons. They certainly have brought lots of happiness & laughter to the kids!!!

Dec 16, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 6

Neutrophils dropped to 0.05 (the lowest being 0), Platelet has gone up a bit to 55 after the transfusion yesterday. Haemoglobin is at 8.3 and so Adrian may need blood transfusion tomorrow. Doc has stopped the IV running on Adrian as well.

Dec 15, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 5

Adrian received 2 units of Platelets on Day 5 post transplant. His neutrophils is low at 0.22. Baby continued to experience diarrhea and doc has prescribed him to take a sitz bath with some chemicals everyday to heal his bum. Below is how Adrian is enjoying his "bum tan" laying on top of Papa's lap.




Dec 14, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 4

Neutrophils at 0.31 and Platelet dropped to 35. Adrian didn't sleep well in the past two nights. He had diarrhea at 4am and continued for the rest of today. He cried whenever we change him because of the red bum caused by diarrhea. We were given some zinc oxide to put on the reddish area and hopefully it'd heal properly. Baby also threw up approx. 3 oz of milk at night feed. Looks like the honeymoon period is now over and Adrian is ready to fight again!


Dec 13, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 3

Neutrophils remained at 0.44 but Platelet dropped to 45. Adrian's appetite decreased significantly today as the vomiting finally set in. He vomited twice today, once after breakfast and once before going to bed. He also had a very mild diarrhea in which the nurses said it's very common for patients post-BMT. Otherwise, he still plays and laughs...

With Adrian's treatment almost comes to an end (wait until he recovers from BMT which would take at least a month or two and then one last immunotherapy treatment 3F8 is due a month after that). It's about time for us to think what would be our next step (e.g. when is a good time to return home!). What a coincidence that there's quite a few number of people who asked us about our plans today. In hindsight, we think it was a blessing in disguise that Adrian was diagnosed NB when we were in HK. Like Dr Chan said today, he wouldn't have made it this far if he were to be treated back in Canada. According to the research, the Immunotherapy Treatments (3F8) did increase the rate of survival (up to 45 - 50% survival) but they are not available in Canada. Let's hope it really would increase Adrian's chance of survival in 5 years upon remission!!

Dec 12, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 2

Neutrophils dropped to 0.44 and Platelet at 67. However, it's strange that Adrian still eats & plays well....

Dec 11, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 1

Nothing has happened yet on Adrian as if he was a normal person. However, he's officially neutropenic with his counts dropping (Neutrophils at 0.59 and Platelet at 80).

Mama was so tired that she passed out when Adrian was napping this afternoon. She had no idea that the doctor has once come, nor bath shower samples have been dropped off, nor Adrian's LifeCare IV infusion pump was beeping until the next door neighbor heard it and called the nurse!!!

Dec 10, 2007

Autologous Cord Blood (Stem Cell) Transplantation - Day 0

Today is Adrian's big day - it was the day of his re-birth! The cord blood that was retrieved from the umbilical cord on the day when he was born has traveled across the miles and was transfused back to him today to rebuild his blood/marrow that has been damaged from the intensive chemo treatments. The Transplantation took place at 15:00 sharp when Adrian was napping. Baby had a very mild discomfort during transfusion as expected while he was under close monitoring on ECG & SaO2. He resumed normal shortly after the transfusion and behaved like a normal person. However, our whole unit smells like rotten eggs/fishy because of the cord blood preservatives and it will last for a few days as per the nurses. We patiently await for Adrian's counts to hit the trough and re-bounce back - that's when the marrow starts growing again. The whole process can take up to 30 - 45 days from today. Adrian's whole body system is all reformatted like a PC that all his vaccination records have been erased as of today. He'd have to be vaccinated all over again (as if he's a new born baby) a year from now when his marrow starts to fully function.

Adrian's sitting on his highchair, noted all the wires on his feet for monitoring!

Dec 9, 2007

Papa cleaned the highchair over the weekend and brought it to our BMT unit yesterday which made feeding a lot easier for both Mama & Adrian. It made the unit more feel like home.... Adrian's appetite has decreased gradually as expected and his Neutrophils has dropped to below the benchmark (i.e. 1) again. Baby's own cord blood will go in tomorrow at 15:00.

On a side note, Santa is being nice to Adrian this year.... The Sunshine Group held a Christmas Party today, though Adrian wasn't able to join, Santa has given him a big bag of Toys which includes cars, candies, a portable VCD/CD/MP3 player, pens etc. Two hosts from the TVB "After School ICU" also came by to visit the kids at the ward. There also came an artist who drew pictures for the kids and Mama had him draw one for Adrian as well.

The artist drew it based on Adrian's picture as he can't go into the isolated unit...



Here's Adrian playing with the piggy bank.

Dec 8, 2007

Last day of Chemo for ABMT also marks the end of the conditioning period. Though the drug, Melphalan, was only given in 30 mins, but it is very toxic! Post hydration will run through the rest of today and tomorrow up until the Transplantation day on Monday! Adrian hasn't felt anything yet.... baby will have some rest tomorrow and Monday will be his big day - the Cord Blood Transplantation day.

Adrian is staring at the TV....

Dec 7, 2007

Chemotherapy resumed today... Dr. Chan came by today and advised that 2 of the drugs' dose that will be used for Adrian's chemo will be reduced by 25%. The fact that Adrian has recently had partial liver resection and the chemo might cause damage in liver if it was given in full force. Transplantation has always been considered a potentially life endangering event afterall. Mama also signed a consent form with regards to Adrian's ABMT today.

Now is considered the Honeymoon Period for Adrian according to the nurses. He still plays a lot and is enjoying his time in the self contained unit without any discomfort & complaints as of yet. Here's a few pictures that were taken today....

Adrian is sitting on his bed watching TV.



View from outside his isolated unit (a.k.a. jail cell for Mama).





Dec 6, 2007

Adrian is all messed up with his sleeping pattern today where he'd fall asleep whenever it's meal time. It really frustrates Mama that if he misses meal time, he'd not have anything to eat! Baby refused to nap and was all hypered when the post hydration finished around 14:00. It took over an hour in order to "force" him to sleep, otherwise he'd be exhausted again later as dinner will be served at 17:00 at the hospital. Met with the Dietitian yesterday and ordered an apple sauce and milk for Adrian today. We'd like to re-introduce milk to Adrian again and see if he likes it given there'll not be any servings after 17:00 and we are worried that he might be hungry later at night. Adrian didn't disappoint me in this case - he drank about 6 oz of milk the first time in 6 months!!!! Unfortunately, he still refused to use the bottle and the 6 oz of milk was served by spoon!!! It's all worth it and let's hope it wasn't a one time shot and he can pick this habit (drinking milk) up again.

Dec 5, 2007

Adrian wasn't behaving last night... Not sure if he's not used to the new environment for sleeping or not having Papa sleeping right beside him as he used to when he was in the big ward in K8N; he fussed around 02:30 and stayed awake til 06:30!! Apart from his sporadic sleeping pattern, it's also a challenge now feeding Adrian the meals provided by the hospital. Baby doesn't like them at all but he had no choice. He's already lost some weight since yesterday - that's even before his chemo starts today! To our surprise, Adrian's renal function came back NORMAL today and so the doctors have decided to go ahead with the high dose chemotherapy as planned. Baby had the Cisplatin drug one last time for an hour and post hydration runs 24 hours after. There's no spontaneous discomfort or vomiting and we are certainly expecting them to come sooner or later....

Dec 4, 2007

Today is the day Adrian is admitted to the BMT unit at QMH. Shortly after arriving to the isolated BMT unit, Adrian was shaved by a Ward Assistant (since his hair will fall again after chemo) then head straight to a bath before going into his unit. Baby seemed to like the new unit and found everything inside pretty exciting. He probably had no idea it's going to be his "jail" for the next 45-60 days if not more. Mama was so busy wiping everything (e.g. diapers, toys and even the ziploc bag with his clothes) with ethanol before bringing into his unit. Adrian had his regular blood test, in fact, he'll have blood test EVERYDAY from now on. Everything seems to run smoothly and that baby is accustomed to the new environment; however, the blood test result came later in the afternoon revealed that baby is again with a sudden poor renal function (abnormally high Creatinine level). Unlike last time where his poor renal function was attributed to the contrast he had during the CT Scan (just before the Liver Surgery), the doctors were basically clueless in this case. In conclusion, Adrian's ABMT may have to delay a day or two (don't know when) until his renal function becomes normal.....

Dec 1 - 3, 2007

These few days leading up to Adrian's admission to the BMT unit at QMH, Mama & Papa were very busy shopping stuff in preparation for Adrian's upcoming ABMT. Basically the idea is we have to buy almost everything "NEW" for Adrian which includes antibacterial shower gel, diapers, new scissors, spoons, ziploc bags etc. The Ziploc bags will be used to wrap his clothes individually upon washing and ironing (yes - ironing steam to kill germs as per the nurses' instruction!). On the other hand, Mama was trying to cook/feed baby as much as he can possibly eat because Adrian will sure miss Mama's home made food for at least 2 months. Baby will only allow to have food from the hospital and home made food is prohibited in the BMT unit to avoid germs/bacteria developed during the transportation process.

Meanwhile, we are trying to enjoy as much as we could being at home! Adrian walks a lot these days and here's a few pictures we've taken while he's enjoying his bath.



Nov 30, 2007

We are back to the Day Ward at QMH for regular blood test and line care today. Met with Dr Chong and Adrian is confirmed to start the long awaited Autologous Bone Marrow (Stem Cell) Transplantation a.k.a. ABMT on Dec 4th!!!! While Adrian is still recuperating from the liver surgery which happened short of 2 weeks ago, he's going to start another battle next Tuesday!

The nurse gave me a checklist of things that I need to buy and prepare for baby's ABMT. The plan is Adrian will be admitted to the isolated bone marrow transplant unit inside K8N on Tuesday and he will undergo 5 days of very high dosage of chemotherapy starting from Wed til Sunday. The chemo dose is high enough that not only will it destroy any remaining cancerous cells but also the bone marrow (crippling his whole body's immune system) and makes room for the new bone marrow. The following Monday, Dec 10th, will be the day where his cord blood will be infused to his body for growing the new bone marrow. What seems like an easy process but in fact it's not... Before/During the time when Adrian's body starts to build up his immune system, he's very susceptible to infection and excessive bleeding. Extraordinary precautions will be taken to minimize his exposure to viruses and bacteria. Baby will most likely be suffering from mucoscitis, diarrhea and possibly graft-versus-host disease. It'll be another long stay at K8N for sure (roughly around 60 days or more).

Nov 29, 2007

It was a brutal night that Adrian barely slept the whole night and became all energetic at around 5am in the morning!!!! He's slowly getting over with the fear of sleeping on his own, however, it was his stuffy nose that bothered him this time. Mama has rubbed some vicks on his chest and nose area hoping this will help ease the stuffiness. While both Papa & Mama were both scared that Adrian may have caught a cold due to the cold weather recently, we found out this morning it was indeed the booger in his nose that caused the stuffiness. Now that the booger was gone, Adrian napped quite a bit this morning and afternoon to make up the loss of sleep last night. Let's hope he'll have a better one tonight! We all needed it!!!!

Nov 28, 2007

With the new water-resistant dressing being applied yesterday, Mama bathed Adrian the first time after the surgery today. It was also the coldest day in November so far in Hong Kong...

Nov 27, 2007

Adrian finally fell asleep on his own last night after fussing for almost a week. Mama & Papa were able to get some well deserved sleep at night. As baby was well rested, he was in a good mood all day today. We made a short visit to QM this afternoon to PSW for line care & wound inspection. The incision healed a lot better than last Friday and a new dressing has been applied. Will be back to the regular day ward this coming Friday for blood test.

Nov 25 - 26, 2007

It's hard to believe it's ONLY one week since Adrian had the surgery and he has been recovering pretty well this time. However, there's not much improvements on Adrian's sleeping pattern at night and both Papa & Mama have been suffering from sleep deprivation!!! Adrian is so scared to be left alone in the room to sleep where he needed either Papa or Mama to "watch" him asleep. Even though he's extremely tired, he'd easily aroused and started screaming as if something was happened to him. We figured he's too scared after the surgery.... he might be afraid that once he's asleep for long, he'd wake up with a painful abdomen like last Monday. It'll take time for him to heal both physically and spiritually....

Nov 24, 2007

It's been the 4th consecutive nights where Adrian fussed at night time. He was extremely tired, yet, he can't fall asleep for long. While it took 30-45 mins to soothe him to sleep and he'd sleep for half an hour and became all awake again crying. We figured there must be something inside that is irritating him as he doesn't usually behave like this. The blood test was all good and we were being discharged at noon. We hope Adrian is more comfy being home and sleep better tonight! Will be back to QM again next Tuesday for line care and wound inspection.

Nov 23, 2007

Not sure if it was the Morphine withdrawal or the aftermath of the surgery, Adrian didn't sleep well in the past two nights. He barely sleeps as he was waken up on and off which made Papa couldn't sleep as well. Otherwise, he behaved as if he'd never had the surgery on Monday. He's jumping up and down in the crib and his appetite is picking up slowly. Doctors came this morning to take a look at his incision on his abdomen and later the nurses changed the dressing on top and Mama got a chance to see how it looks like this time around. It's the same scar left behind from the July surgery except it goes down a bit on his right abdomen which made it easier for the liver resection. There's still some blood coming out on some part of the wound but the doctors said it's ok as today is only the 4th day post-op. Blood was also drawn this evening and if everything is ok, Adrian will be discharged tomorrow!!!

Nov 22, 2007

Papa was so tired this morning from the continuous rhythmic patting last night for Adrian woke up a few times at night. Despite the tiredness, baby only napped for an hour during the day and he was so hypered that he was literally crawling and walking inside his crib. It's pretty amazing considering today is only his 3rd day post-op!!! Adrian continues to pass through gases and finally had the long-awaited bowel movement!!! The morphine was off in the afternoon and he was allowed to have soft diet today i.e. watery congee. His IV can also be off if his appetite resumes back to normal tomorrow and hopefully we are looking at going home on the weekend!

Nov 21, 2007

Highlights from 2nd day post-op:
- Adrian was allowed to drink clear fluid in the morning and glucose water later in the afternoon.
- Baby finally passed through gas at around 16:00. Mama was so happy when she heard the "boop boop" sound!!!
- Morphine dosage has been reduced in half and hopefully it'd be off tomorrow.
- Adrian slept most of the day, however, he was easily aroused... I think it was because of the lack of security after the surgery. Mama can't simply leave his eyesight for 1 second!!!!

Nov 20, 2007

It was a short stay at the ICU and doctors have agreed to transfer Adrian back to the regular ward without constant monitoring in the ICU in the afternoon!!!! It's the shortest stay ever in ICU for Adrian!!!! While Mama was expecting baby would stay in ICU a bit longer, she had to rush home and got the necessities such as diapers (Adrian had foley catheter in ICU but it was removed later) and baby's fav blankee. I was trying to hold Adrian at one point but he screamed when he was being held half way. Afterall, today is only the 1st day after the surgery and I think his wound still hurts. Otherwise, he's all good (he smiled for the first time since yesterday morning before the surgery) except he needed me to keep him company ALL THE TIME. Prof Fan came around 20:00 (it's amazing he did the ward rounds that late!!!) to see Adrian and he felt that baby is doing really well that he said the nasogastric tube can be removed as well. Adrian is one more step towards recovery. But I'll talk to the doctors tomorrow about reducing his Morphine dosage.

Morphine infusion for pain relief...




Nov 19, 2007

Today is Adrian's big day!!! The duration of the surgery is estimated to finish in 4 hours and it was done in 4 hours & 25 mins. Mama waited outside the operation theater and finally got to see Adrian at around 15:00 when baby was transferred to ICU. Met with doctors in ICU as well as the surgeons who were involved in the surgery but all of them seemed to have a different understanding of the surgery in terms of what segment of the liver has been resected. We got the final say from Prof Fan late in the evening when he came over to see Adrian in ICU. Apparently, segment IV & V along with the gall bladder have been resected and that's where the tumors were located. There's also a "scar-like" substance lying on the surface of segment VIII was taken out. Other segments look ok by sight and hopefully Adrian is all clear from the bad cells. Adrian is bedridden and he's awake a lot of times even after the surgery. He lives on Morphine again for pain relief... It's his 3rd surgery in life and also the 3rd time in ICU, many nurses there actually recognized baby Adrian and they all told me that he's grown a lot. Let's hope THIS IS IT... let it be his last time in ICU...

Photos taken at pre-op


Nov 18, 2007

Adrian woke up early at around 07:00 and head to QMH this morning for an early blood test. Surprisingly his blood test from yesterday and today's showed that his Creatinine level has gone back to normal!!! We also met with Prof Fan for the first time today, the day before the surgery. He went through all the details about the surgery and showed us where his tumors are on the latest CT Scan. Sadly, Adrian's gall bladder will also be sacrificed because of the proximity of the liver section to be removed.

Details for the surgery:-
Description: Partial Hepatectomy
Chief Surgeon: Prof ST Fan
Duration: Approx. 4 hours starting at 08:30
Purpose: Removal of Liver segment V/VI; and possible IV as well (depending on whether the small tumor (2mm) can be found within). Gall bladder will have to be removed due to the proximity of its location to Segment V/VI.


Front of Liver for reference


Adrian smiled a lot today, he's probably too young to know what will happen tomorrow. Here's a video we took today during our visit:

Nov 17, 2007

We arrived QM early morning because Adrian had to fit in one of those urgent ultrasound appointments on his kidneys. The preliminary result came back normal as expected with nothing major on his kidneys. However, the blood test result from yesterday still showed a higher than normal Creatinine level. Doc had no idea why and what causes the sudden poor renal function. Docs mentioned the higher than Creatinine level may due to the contrast that was given to Adrian during his CT Scan on Tuesday. So, Dr Cheuk from K8 & the doc from PSW both concluded that the surgery may have to delay if this persist... however, the final say will reside with the Chief Surgeon, Prof Fan, whom we are going to meet with tomorrow. Countless urine samples have been provided to them in the past 2 days and blood was drawn today to see if there's any improvement on the Creatinine level. We will be back again tomorrow for another blood test as well as meeting with Prof Fan to talk about details of the surgery.

We also had a glimpse of the CT Scan Report on Tuesday. There's still residual liver metastases in segment IV and V/VI as expected but are slightly reduced in size.

Nov 16, 2007

Papa took half day off and accompanied Adrian to QM for Pre-Op Assessment. We arrived PSW around 15:00 and didn't leave until 18:00. Met with the Anesthesiologist as well as one of the doctors from the Surgical Team discussing risks associated with the surgery. This surgery, again, is considered as "ultramajor" - same as the one he had in July because it involves an organ (i.e. Liver). They are going to remove section IV/V of Adrian's liver, that's where his tumors are located. Liver is the only organ in human body that will grow by itself but it may take up to months or even years to fully recover. I'm afraid it may take even longer for Adrian since he'll be going to ABMT in less than a month after the surgery! While we thought we'd have home leave for the weekend and won't be back until Monday - the surgery day; we were wrong.... The blood test yesterday showed that Adrian's renal function deteriorates a bit with a higher than normal Creatinine level. So for the sake of safety, they did another blood test and Adrian will be back again tomorrow for an ultrasound on his kidney just to make sure everything is ok....

Nov 15, 2007

A busy day today for Adrian... Adrian was all dressed up this morning because it's the first time he's out, not to QM (2nd destination at QM), but to Central HK. He was all curious to see the busy streets while we were on a our way to the Chinese Medicine Doctor in Central. We booked this appointment awhile ago as we thought we'd try TCM for Adrian's good health. Unfortunately, Adrian cried most of the time during consultation and the doctor was having a hard time to have a close look at him. In the end, I got what I wanted... Tips on the chinese food therapy for Adrian based on his model of the body. Our next destination is QM for blood test and line care. His counts are on the rise (Platelet over 100 and Neutrophils at 0.99) and so he didn't need any GCSF shot. (Surprise!!!) Will be back again tomorrow, but to PSW for Pre-Operation Assessment.

Nov 14, 2007

We are rested at home without any appointments to go to the hospital today. Adrian got better last night and he's back to his routines. I still can't believe the surgery is going to take place in less than a week. This surgery is in addition to his protocol... (he wasn't supposed to have the surgery at this time). It is nothing less than the one he had on July 9th. In fact, the Paediatrics Surgical Team were unable to remove it (the tumors in liver) the last time, therefore we've tried our very best to contact the Hepatobiliary Surgery team to deal with it this time. We hope it's for the best of Adrian.... We hope it'd minimize any future re-occurrence of the disease though we know we will always live with the fear of a relapse (or possible death) even after Adrian is done with all the treatments!

Nov 13, 2007

Another rough night last night, though it was not as bad as Sunday night... Adrian woke up twice after midnight! Mama was going to mention it to the doctors when Adrian is back to the Day Ward today but somehow too many things happened!!! First, Adrian is scheduled for a CT Scan at 10:00. He was given a higher than normal dose of sedation just to keep him in deep sleep (PSW) so the test can run smoothly. Baby was very good that he drank close to 80ml of trast this time.... The Scan was done before noon and by the time we were back to the ward, Mama was given an Admission Slip from the Paediatrics Surgical Ward that Adrian is due to come and stay at PSW on Nov 16th????!!!! Mama had no idea why baby has to be submitted on Nov 16th for surgery is going to take place on Nov 22 ??? After several phone calls, we were notified that the surgery date has moved to Nov 19th instead! Therefore, it's going to be a busy week this week before the surgery... In less than a week's time, Adrian will have to be back at the Day Ward again on Thurs for blood test and GCSF shot PLUS an appointment with a Chinese Medicine Practitioner (we booked it early thinking we are home every Thurs), then Friday to PSW.... We are going to make sure Adrian eats well the rest of the week just to make him strong before his big day next Monday!

Nov 12, 2007

What seems to be an ordinary day at home for Adrian turns out not so ordinary... For some reasons, baby was so scared whenever we put him down to sleep in his crib. It all started at nap time yesterday afternoon and it's getting worse last night. Both Mama & Papa can barely sleep as Adrian needed us to keep him company beside his crib from 02:00 til 04:00. Both of us were so tired that we gave up and brought him to our room to sleep with us for the rest of the night. Adrian didn't quite like it but at least he has both Mommy & Daddy right by him. We had no idea what went wrong and maybe he had a nightmare??? Otherwise, he behaved totally normal during the day! We are back to QM tomorrow for a last minute CT-Scan re: pre-surgery assessment and we'll have a better idea if it was something inside his body that was bothering him....

Nov 9, 2007

Last day of 3F8... Adrian is finally done with his 5th Immunotherapy Treatment. While Adrian did feel some pain during the course of treatment, however, I felt that they were not as strong as before. Adrian was being discharged tonight with a big & swollen head! Doc said Adrian only requires 1 blood test per week as opposed to 2 from now on before ABMT. So instead of going to QM twice a week for both line care and blood test, we will have to go only once! However, Mama will start learning the line care next week, she has to do it in front of the nurses THREE times and if she passed, she'd be approved to do it at home.

Surgery Update: We have finally heard from Prof Fan and he has touched base with Dr Chiang, the doc in our ward. Adrian is booked for the liver surgery on Nov 22 to remove any residual tumors in his liver. Meanwhile, Adrian will have a CT Scan next Tuesday to confirm if there IS still a tumor there. No surgery is needed if there isn't any.... Baby will also be getting GCSF later on to boost up his white blood cells/Neutrophils before the surgery. Mama also sat with Dr Chiang going over all our concerns and risks associated with the surgery...

Here's some of the pictures taken at K8N this week:
c



Adrian's falling asleep while watching TV...
(sorry for the poor resolution as it was taken by our cell phone!)

Nov 7 - 8, 2007

3rd & 4th day of 3F8 seemed to run smoothly... Adrian had some mild pain and rash as usual and the medication did help to relieve his symptoms. Despite the heavy medication he had, he woke up after napping for an hour or so and became completely awake by 16:00. Mama left a message with Prof Fan's secretary today to follow up on the surgery progress.... still waiting & waiting!!!

There's a mother whose baby was right by Adrian was kind enough to share some soup her maid made with Adrian. I'm really grateful for all the friendship and support we received during our stay at QM.... There are times we will miss each other if we haven't seen them for awhile and on the other hand, we knew it was all good if they didn't show up here at K8N....

Nov 6, 2007

Adrian didn't experience much pain on his 2nd day of 3F8 Treatment. The regular Morphine infusion deemed to be sufficient and he didn't end up getting any extra pain relief. His head has gotten a bit swollen due to the rash which happens everytime when he's on 3F8.

Nov 5, 2007

We are back to QMH today for Adrian's 5th round of 3F8 Treatment. Both Mama & Papa were quite anxious to know if Adrian will have any pain this time around... Out of our surprise, baby started to experience pain just before the drip was finished around 15:00. Mama, however, had no guilt at all when she saw Adrian was in pain because she knew it was for his own good! Other than the pain, baby also had some rash on his face as usual. He was given Morphine, Valium along with Piriton to release his pain and itchiness. Imagine who could have gone asleep when you were right by the 50" big LCD TV especially for a baby? Adrian kept himself awake a lot of times & watched the TV right next to him even though he was quite drowsy due to the medication. He didn't have enough sleep at his nap and as a result, didn't eat well at dinner time....Arghhhh!

Nov 2, 2007

Another day at QM. Since Prof Fan is still away, nothing has been communicated to the Oncology Ward yet. However, spoke briefly to one of the doctors in K8 and looks like we'd go ahead with the surgery once we get the green light. Meanwhile, we are still 'waiting' for both rooms for ABMT or Surgery; the next 3F8 is due next week. Mentioned our worries about the absence of pain in relation to HAMA factor developed inside baby's body, I requested we'd not go ahead with 3F8 if the blood test came back positive on HAMA on Monday. However, I just realized today that QM didn't do test on HAMA. The blood that was drawn prior to 3F8 everytime were being stored and will be sent to US for testing when the whole treatment is finished!!! So I wondered what's the point of testing for HAMA??? Here's the excerpt from the Sloan-Kettering Website:-

"... HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. If a patient has HAMA, there is no point in doing 3F8 treatments because the HAMA will block the 3F8 from getting to neuroblastoma cells. However, HAMA can disappear, and 3F8 treatments can then resume. Patients are checked for HAMA by means of a blood test. Patients with HAMA do not have pain or other side effects of 3F8 treatment, but patients without side effects sometimes do not have HAMA (and can continue to be treated with 3F8).

HAMA might be a sign that a patient is developing an immune response against the neuroblastoma -- and that is a good thing. It is probably best that a patient receive at least four cycles of 3F8 treatments. Most patients who have received chemotherapy only a short time before 3F8 treatment do not make HAMA because part of their immune system is too weak. In Memorial Sloan-Kettering's protocols, the aim is to give repeated treatments with 3F8 until HAMA is made. It appears that the best chances for cure are realized when multiple cycles of 3F8 treatment are given before the patient begins to form HAMA."


Therefore, we will go as planned i.e. Adrian will have his 5th course of 3F8 next Monday!

Adrian in his new highchair (he frowns because of the camera flash)




All bundled up for the QM trip today

Oct 31, 2007

It's Adrian's second Halloween... no trick or treating this year as we stayed home! Adrian continued to make good progress on his walking! He refused to be held a lot of times when he walks and I'm really proud of him being so brave that he's not afraid even when he falls. Here's a pic from last year's:-

Adrian's first Halloween in 2006!
(Special thanks to Mitchie for doing the artwork! :)

Oct 29, 2007

We went to QM Monday today instead of the usual Tuesday (Day ward will be closed tomorrow for exams). Adrian had the blood test and line care. Met with the M.O. at the Day Ward and apparently he still hasn't heard from the Liver Surgery Team yet (he didn't know Prof and I have already spoken). According to the protocol, Adrian should start ABMT next week - but since they are running out of rooms, baby may have to do another 3F8 before ABMT, or Surgery in this case. We'll be back again on Friday and will see what happens.

Oct 27 - 28, 2007

THREE great things happened this weekend:-

1) Received a call from Professor Fan on Sunday morning! Adrian's records & films have been traced and arrived safe & sound on Professor's desk. We had a nice discussion over the issue of baby's liver surgery and once again, he reassured me that it's doable. However, the final say resides on the Oncology Team. He's going to touch base with our doctors tomorrow to discuss it further. I really appreciate his effort to personally follow up on our case.

2) Mama finally bought Adrian a new highchair!!! Believe it or not, Adrian has been using his walker as highchair on feeding. Initially we didn't realize we'd stay in HK this long and we didn't want to spend the money. But feeding baby on the walker has become a challenge since baby moves around a lot these days. That made the purchase is necessary - Adrian seems to like it so far and hopefully it's a good investment and it will make meal time more enjoyable for the both of us.

3) Lastly, Adrian took the initiative to walk unsupported for about 10 steps today!!! This is a huge milestone for Adrian and we do look forward to seeing him actually walk before ABMT! It's about time to start our house proofing as well.... :)

To sum it up, Papa uploaded some of the old/new pictures from his D70 camera... we have mixed feelings seeing baby's old pictures. Here are they...

Adrian is ready for his first flight at Pearson Airport on Feb 9, 2007!!! Little did we know it's the start of our nightmare.... :(((((


At home back in March 2007.




Having gone through 5 chemos, surgery & a couple of 3F8s.. see the difference...


This is how Adrian looks TODAY! The worst is not over yet..

Oct 26, 2007

Haven't heard anything from the Professor's office nor doctors from K8N telling us the progress on the possibility of the Liver Surgery for Adrian - Mama decided to call again to the Prof's office to see what had happened today when we were at the Day Ward. To my surprise, the secretary told me that the team still HAD NOT received the films (i.e. CT Scans, MRI etc) yet from the Oncology team!!!! I was confused simply because I was told the films have been sent for weeks!!! There's got to be some miscommunication between the two departments and in the end, we suffered.. I hate to be nosy, and after a discussion with our M.O. - I did find out who had picked the films up a couple of weeks ago and told the Prof's secretary and hopefully she will follow up with that person. Other than that, Adrian was doing ok on his usual blood test. It's funny that our CCF Counselor didn't recognize Adrian (at first sight) not until she saw me!!! Baby has looked so different in her eyes since she hasn't seen him for a month or so... Yes - his hair, eyelashes and eyebrows are all growing back!

Oct 23, 2007

Mama finally took the initiative to call up Professor's office to follow up on the progress yesterday. We were told that the team has borrowed the CT Scans and films for a week and still hasn't contacted us yet. Afterall, it's still a waiting game! We, on the other hand, are back to the Day Ward today for blood work and line care. Adrian looks a bit different to other moms in the ward because of his growing hair. Mama is happy to find out a lot of them commented that baby has grown a lot (one even used the word "mature" to describe Adrian) since the last time they saw him. We are hoping Adrian can put on as much weight as possible before ABMT. Blood counts showed that his Neutrophils is at 0.73 and Platlet up to 73. They are still considered low (effects after RT) but at least they are on a rising trend. Will be back to the Day Ward again on Friday.

Oct 18, 2007

It's another QM day today... Originally we were supposed to be back every Tue & Fri but since tomorrow will be a public holiday, we were asked to come back today instead. Adrian is in good shape these days with his hair growing nicely. Mama managed to talk to Dr Chan, the NB Specialist, while he was making the ward rounds at the Day Center. He said the absence of pain from baby's last 3F8 treatment means that his body's immune system has started to come back fighting against the antibodies. In other words, it's not a good sign from the medication perspective; On the other hands, it means baby is slowly recovering and becoming normal since he last had chemo in July. The last 3F8 treatment was supposed to be the last one before the ABMT but because of some urgent cases, Adrian may not be able to start his in early Nov and may have to be postponed for another month. Meanwhile, they'll do another 3F8 on him during the time lag but I doubted if it'd be useful to do it now as it was meant to be AFTER ABMT when his body is weak with no fighting power against the antibodies. We will touch base with the Liver Surgery group on Monday to see the progress. I guess IF Adrian did go for surgery, that might solve the timing issue....

Oct 16, 2007

Adrian is back to QMH today for routine blood work and line maintenance. Mama brought along his favorite blanket and meals thinking that we have to stay there long as baby may need blood transfusion today since his haemoglobin level was only 8.2 on Friday (blood transfusion required if haemoglobin is < 8 ). Surprisingly, the blood result came back with good news... though his Neutrophils and Platelet were both dropping due to RT, his haemoglobin level had a rebounce - it's up at 8.9!! So we left the hospital around noon and Adrian had a good nap at home. We still have not heard anything yet from the Liver Surgery Team and we are contemplating whether to make a call to Prof Fan to follow up on the Progress. Doc at the Day Ward said she will follow up again as well. We'll see what happens...

Oct 14, 2007

Adrian still looks tiny even though he is officially 18-months old today! It's quite funny one of the porters at the hospital asked me the other day whether Adrian has reached ONE yet? I didn't blame her as Adrian did look like a year old baby!!!! We bought him a new pair of shoes today since the two old pairs which fit 9-12 months were barely fit with no room left. But can you imagine an 18-months old baby can still wear those 9-12 months old shoes???

Oct 13, 2007

NO PAIN at all today on Adrian's last day of the 3F8 Treatment. Baby, however, suffered from a very severe rash. His whole head got so allergic that there's even a big lump appearing at the back of his head which scared both Mama & Papa! He was given a couple of high dose Piriton to control his allergy and because of the drowsiness, he slept the rest of the afternoon and woke up around 19:30. We then had dinner and got discharged from QMH around 20:30. It's pathetic we didn't get to meet with the doctors from Liver Surgery during our stay this time. Was it because they were so busy and occupied because of the emergency treatment for Lydia Shum?? We have no ideas what the next step is... it'll either be another 3F8 or Surgery (if possible), or the Autologous Bone Marrow Transplantation (ABMT) begins!!! The ABMT will start any time as soon as the isolated room becomes available.

Oct 12, 2007

Don't know if this is good news or bad news... Adrian DID NOT have any pain at all today on his 4th day of 3F8 Treatment!!!! While Mama kept on anticipating for Adrian's pain, yet, baby continued having fun in his crib. Baby only had a very mild rash where he was given a dose of Piriton and that was it! Apparently we were told the drug works if the person did experience severe pain but I'm not sure what happened otherwise. Does it mean there's antibodies developed inside baby's body? Mentioned it to the doc and she said we can't jump into conclusion in this case when it only happened once. We'll see what happens tomorrow...

Oct 11, 2007

Adrian's pain tolerance is getting better... He started to experience pain during the second time of flushing. He got all the pain relief drugs at the end together with Piriton. He had water retention towards the end of day with a big swollen head. Nothing out of the ordinary...

Oct 10, 2007

Adrian didn't suffer much on his 2nd day of 3F8 Treatment. Ward MO was supposed to stand by and prescribed pain relief medication before 3F8 starts for Adrian but somehow it was forgotten! So Adrian was in so much pain for almost 20 mins... By the time doc came, his pain seemed to have subsided. Baby ended up getting only an extra shot of Morphine and Piriton for his rash. He later fell asleep and woke up around 16:00 for his snacks at 17:00. No swollen head as of yet... A doctor from the liver surgery group dropped by today, however, he couldn't find the CT/MRI films here and will have to come again tomorrow. The films were indeed placed at the Day Ward where one of the doctors brought there after the meeting.

Oct 9, 2007

First day back at K8N for the 4th course of 3F8 Immunotherapy Treatment. Baby had a mild, not so severe reaction this time. Apart from the pain and itchiness on face, at least his face didn't get swollen as last time. Docs have finally sent a proper confirmation slip to Prof Fan for further consultation regarding the possibility of a Liver Surgery for Adrian. Docs from K8N are generally against the idea of a surgery as they claimed that Adrian responded well on chemo and the leftovers may only be matured cells or even scars that are benign. We, however, wanted to remove ALL TUMORS if possible. I look forward to meeting Prof Fan in person for further discussion.

Oct 7 - 8 , 2007

Adrian had 1/4 inch new hair growing on his head. His eyebrow and eyelashes are coming out as well. It's the first time after he's finished the 5th chemo in July. We are not overly happy with it since he'll be hairless again during BMT. However, we are looking forward to his hair growing next time because that's when he's done all the treatments!!!!

Oct 6, 2007

10th day of RT: Adrian survived the whole 10 courses of Radiotherapy Treatments!!! Talking about side effects... Fatigue is the one! We'll spend two more days at home and then Adrian will be back to K8N on Tuesday for his 4th course of 3F8 - Immunotherapy Treatment!

Oct 5, 2007

9th (out of 10) day of RT: Second last day of RT... Mama met with Dr Kwong, the Radiologist doctor, today to sum up Adrian's RT effort. Adrian is doing fine so far on RT that he didn't have much side effects as mentioned earlier (i.e. diarrhea, sun burnt on that part of the skin etc.). Because of the fact that liver can't be irradiated, we talked about the MIBG options where Adrian will be given high dosage of radioactive isotope in hopes to kill the remaining liver tumors. However, Dr. Kwong didn't suggest us to do so simply because the MIBG signal last time was very weak... it's probably 1-2% higher than a normal person. She said it's not worthwhile to do so having the whole body irradiated and the effect may not be significant. Had a phone conversation with Dr Chan as well and apparently CT/MRI films will be sent to the liver surgery department and we'll wait to hear from them (p.s. he didn't know I've spoken to Professor already and knew the surgery is viable!).

Oct 3 - 4, 2007

7th - 8th (out of 10) day of RT: The countdown begins as Adrian's RT almost comes to an end. Baby seems to have enjoyed Mama rocking him to sleep these days. "Special arrangements" have been made so I had a chance to chat with a World Renowned Liver Professor today regarding the possibility of a Liver Surgery for Adrian. I was very impressed by his professionalism in returning my call and answering my questions within hours after checking into baby's records. The good news is a surgery is viable to remove the remaining calcified tumors in liver. The next challenge is to convince our Oncology Team of doctors whether to go ahead with the surgery NOW or WAIT until the treatment finishes. Meanwhile, I will meet with the Radiologist doctor tomorrow discussing Adrian's RT Progress and the MIBG Treatment (another option vs surgery to remove the remaining calcified tumors in liver).

Oct 2, 2007

6th (out of 10) day of RT: Having spent the past two days at home, Adrian's schedule was all messed up this morning. First, he fussed at breakfast time because of an early rise; then when he finished the oral sedation before RT, he refused to sleep even though he's extremely tired. Mama was so worried that baby may end up getting Ketamine. The staff at the RT department were nice enough that they found Mama a dark room where she hand rocked Adrian to sleep. Baby had lunch soon after he woke up from the nap but maybe it was just a short one (he usually sleeps >3 hours with the oral sedation but today he slept for 2 hours only), he threw up a bit in the middle of the feeding....

Sept 29, 2007

5th (out of 10) day of RT: Adrian is half way through the entire RT. No side effects as of yet.... His RT is scheduled earlier today at 11am because of Saturday and so both Mama & baby woke up early (Mama at 05:45 and baby at 06:15) for breakfast. We also met with Dr Chan discussing about options available for little Adrian regarding the leftover tumors in his liver. Conclusion is he's going to send the films to the PAED Ward doctors to take a look at to see if surgery is feasible or not AND talk to the radiologist about the option of MIBG Targeted treatment. Having gone through almost 2/3 of the treatment at this stage, Adrian will have the final assessment after BMT & 3 more 3F8s. Even though it's been considered as Mature cells, we are not taking the leftover tumors in his liver lightly because we want to minimize the possibility of relapse in future...

Sept 28, 2007

4th (out of 10) day of RT: Adrian seemed to be very used to the new daily schedule now. So the RT appointment has been running quite smooth and usually he wakes up around 3pm - that's when he'll have lunch and we'll head home after.

Sep 27, 2007

3rd (out of 10) day of RT: Our first day back at the Day Ward for more than 3 weeks... We were being assigned in a more isolated ward area because Adrian came from the outbreak zone in K8N and he still has a runny nose & cough... It's more quiet there and Adrian fell asleep in no time after having the oral sedation. Adrian practices hard on walking these days partly because I want to tire him out in the morning so he can fall into deep sleep for RT and also I was hoping he can walk before going for BMT in November where he'll be isolated in a self-contained room in K8N for at least 60 days!!!

Sep 26, 2007

Both Mama & Adrian had a break today without getting up early for the QM Trip. Baby, however, has a very poor appetite... He prefers to have fluid these days and Mama has been busy making different soups to accomodate him. We were looking at the old videos we took for Adrian (the tape was in our camcorder we brought along to the HK trip in Feb 2007) and it brought back a lot of the sweet memories!!! I always wonder what would our lives be if Adrian had no cancer... it would have been so nice....

Sep 25, 2007

Today is the Mid-Autumn Festival and Adrian went for his 2nd day of RT. Oral sedation seemed to work so far and baby fell asleep during the whole process. MIBG result came in with more or less the same outcome as last time i.e. static lesion over baby's right lobe of liver. Though doctors kept on saying the remaining tumors in baby's liver have all been calcified, we surely hope there's ways to remove it. We will discuss the options with Dr Chan this Saturday if possible. Since tomorrow is a holiday and no RT will be done, we were being discharged from QMH!! We will return to the Day Ward on Thursday.

Adrian has 4 lanterns this year.... Buzz Lightyear, traditional paper lantern, Mama made lantern & traditional fish lantern.

Sep 24, 2007

Adrian is adapting to a totally new schedule today on his first day of Radiotherapy Treatment. This schedule will have to stay for the whole duration of his RT (i.e. 2 weeks' time). First, he got waken up by Mama no later than 7am and then he has to finish breakfast by 8am (i.e. 4 hours prior to RT for sedation). And as soon as we arrived K8N at 10am, I told the nurse about Adrian's cold symptoms. Surprisingly, doctors/nurses didn't do anything (I thought they were going to isolate us) simply because Adrian didn't develop a fever!!!

In preparation for Adrian's upcoming Autologous Bone Marrow Transplantation, baby was required to leave a number of samples such as stool, urine, blood & nose serum etc to do some testing and determine if he is medically fit for BMT. We also met with the Dentist (to see if there's any cavities) and Dietitian (advice on diets during BMT). Apart from the RT at noon, Adrian also had Chest X-Ray, Bone Age & ECG today - all for BMT. RT ran smoothly than expected, baby fell asleep and the actual irradiation part took only 2 mins. We are approved for daily Home Leave so we get to go home everyday. Hope tomorrow will be as good as today's!

Sep 22 - 23, 2007

Adrian has been suffering from running nose & coughing throughout the entire weekend. Feeding him has become a challenge again as he lost his appetite for not feeling well. The temporary tattoo on his abdomen is fading even though we didn't wash that part of the body at the bath. Should baby refrain from bathing for 2 weeks just to make the tattoo stays?

Sep 21, 2007

It's a busy day today for little Adrian... he got waken up by Mama at 7am this morning because we had to head back to K8N by 8:30am. Adrian is fully booked this morning - He had the return MIBG scan followed by simulation (re-do... first one done on Aug 6th). Not sure if Adrian was well rested at home last night or what, he didn't fall asleep at the oral sedation. I took over an hour trying to make him sleep but with no success. Therefore, he was given a total of 4 needles including Ketamine and he passed out immediately. With baby in deep sleep, both procedures ran smoothly. RT will start next Monday for a total of 10 Treatments. We left K8N in the afternoon after Adrian has waken up and had some food and will spend the weekend at home!

Adrian was playing with his Buzz Lightyear lantern.

Sep 20, 2007

We are home today but Adrian seemed to have some cold/flu like symptoms. He has a "mild" runny nose and starting to cough late afternoon. I'm starting to get worried if he caught the virus from the outbreak at the ward. Talked to baby's buddy's mum and apparently this virus has no cure. Our immune system would have to fight the virus on our own but unfortunately cancer patients have weak immune system which makes it harder for them to be cured. Let's hope Adrian be the real fighter and get away from the symptoms ASAP.

Sep 19, 2007

Bone Scan result came in today and Adrian is clear! (Thanks God!!) Returned MIBG only lasted 35 mins, however, we have to return for another MIBG on Friday!!!! The technician & Dr. Chan said the reason why Adrian has to return the day after tomorrow maybe a good news!!! It may mean the colour didn't get soaked too much (only cancer cells absorb the colour) and the doctor wanted to make sure if this is the case so he suggested us to wait another day to confirm. We'll see how it goes... The recent blood counts showed that Adrian is in full force... his Neutrophils finally climbed up to almost 1 (at 0.96) and Platelet at 103. Simulation will take place on Friday and RT will probably start next Monday. Since there's nothing to be done tomorrow, we had home leave later today and tomorrow and will be back to K8N again Friday morning.

Sep 18, 2007

Despite the fact Adrian had 3F8 late yesterday and his tiredness, poor baby got waken up by the nurse early this morning because he had to fall asleep at 9am for the MIBG test. The test was ok and we have to go back for a return scan tomorrow morning. It's been pretty quiet in the ward since the outbreak and almost everyone (except the babies) wear a mask!! Mama handmade a lantern for Adrian today (Arts & Crafts 101) with the materials provided by CCF.

Sep 17, 2007

We arrived K8N around 10am this morning getting ready for the Bone Scan & 3F8 that follows... The Houseman only did it once and the block was secured on baby's right hand for the radioactive isotope injection. Bone Scan ran smoothly and finished around 16:00 and the last day of 3F8 started right after. The usual routine started with Morphine, Valium & Piriton. On the bright side, both Adrian & Mama received gifts for Mid-Autumn Festival from the sponsors. Baby got a very cute Buzz Lightyear Lantern!!!!

Sep 15 - 16, 2007

We left the hospital Saturday night after finishing the 4th day of 3F8 for home leave on Sunday. Adrian felt better than the day before, at least he didn't need the extra Valium needle to release the pain. While Papa stayed with baby during his treatment, Mama went to a talk on "Food/Diets for Cancer Children" hosted by a Chinese Medicine Professor from HKU. The talk was very informative and we are now more knowledgeable on what's best for Adrian in terms of what he eats. Apparently there's a small outbreak in the ward and unfortunately Adrian's best buddy caught it (she got a runny nose). She was transferred to an isolated room on another floor and we hope Adrian didn't catch it. We will be back to K8N Monday morning for the last day of 3F8 and a series of tests are waiting for Adrian.

Adrian was holding tight on the bed rail to release his pain/itchiness.


Adrian woke up after treatment with a swollen head.

Sep 14, 2007

Today is the 3rd day (& counting) of the 3F8 treatment. Usually Adrian's swollen head subsided after a night of sleep but surprising, baby woke up this morning with a big & swollen head. His head got so swollen to a point that I can hardly recognize him. Everyone asked me what happened to my little Adrian. He was given a needle to deal with his water retention and as soon as he got better, the treatment was all ready to start at 13:00. Baby continued to experience severe pain upon treatment and the rash came out not only on his face but his whole body for the first time. He felt very itchy and that annoyed him very much. Tomorrow is the 4th day and we can have a break on Sunday where the lab will be closed and the last day of treatment will be on Monday. We were hoping Adrian can have home leave on Sunday.

Sep 13, 2007

2nd day of 3F8 Treatment didn't run as smooth as the 1st day. Adrian was in so much pain that he had 1 extra shot of Morphine when compared to yesterday. His head got so swollen at the end of the day that he was so fussy and he needed another shot of Piriton to release the allergy. All the drugs have caused him drowsiness and so breakfast & lunch were the only meals he had today. The CT Report came back today - the remaining 2 "small" tumors in the liver now measures 2cm x 1cm and 3mm respectively and they are heavily calcified. The doctors said it's good news as baby continued to respond well on chemotherapy & immunotherapy treatments. But I honestly don't know what would happen if the tumors are still there at the end of ALL treatments... Doc said BMT is scheduled approx. 6 weeks after baby finishes Radiotherapy.

Sep 12, 2007

Adrian is back to his 2nd home, K8N, this morning for his 3rd 3F8 Immunotherapy Treatment. Baby was assigned in a semi-private room when we got there because the wards were completely full!!! Later in the day when some patients were discharged, we got transferred back to the big ward with Adrian's best buddy as our neighbour! The treatment started around 13:00 and lasted about 1.5 hours. I think Adrian has grown bigger and stronger for staying home in the past few weeks, he seemed to tolerate the pain better. Despite a few shots of Morphine, Valium & Piriton, he woke up around 17:00 and was able to have some soup and dinner whereas he basically gave into exhaustion the last time. Let's hope he can be the same for the remaining 4 days...

Sep 11, 2007

Tuesday is the day Adrian goes back to QMH for blood work and line maintenance. Originally as we were always told, Adrian was supposed to be well recovered from his counts and then Radiotherapy starts. However, Dr Chan was doing the Ward rounds today and apparently he's the specialist on NB. He asked if Adrian was due on his 3F8 treatment.... Then all of the sudden, everyone realized Adrian can have 3F8 treatment while waiting for his counts. Apparently, 3F8 Immunotherapy treatments are not chemos and it can be done in 28 days interval and his 3rd one was due Aug 30. Therefore, baby will have 3F8 tomorrow and RT will start right after. Doc said as long as Adrian's counts are in a rising trend, RT can start anytime. His Neutrophils is at 0.59 and Platelet at 80 today. Baby was very grumpy today at the Day Ward and he'd cry out loud whenever Mama went to the washroom or downstairs to buy stuff. He wasn't in a good mood at all or maybe he knew he has to be back to K8N tomorrow?!?!?!

Sept 8 - 10, 2007

Adrian is completely BALD with literally NO HAIR!!! Papa decided to hand picked the THREE remaining hair on Adrian's head this weekend...

September marks the 7th months that we got "stuck" in HK... it also meant that both Papa & Mama are one year wiser!! Mama finally found time to chop off half of her hair so it's easier to handle for Adrian's upcoming BMT and she doesn't have to blow dry it anymore. Papa also had his haircut and both of us got a chance to take a break and meet with some old friends.... Our ONE & ONLY wish this year - Our little Adrian, please get well soon!!!!!!

Sept 7, 2007

We spent the day at QMH today on blood test as well as a CT-Scan Appointment. The CT is the first one since Adrian had the surgery in July. In fact, this is part of the regular check up every 3 months to see the progress (mIBG is scheduled on Sept 17). There's not much change on Adrian's blood test result on Neutrophils (at 0.58) and Platelet rose a bit to 55 - still far from the requirement. Our CT Scan appointment was supposed to be at 14:30 but the scanning department didn't call us to get ready until almost 15:30. Baby was so tired (nap time) and I kept annoying him just so he could fall into deep asleep for the test. The test ran smoothly and we'll know the result next Tue.

Here's some snapshots on Adrian while he's playing the drum set today at the Day Ward.




"What d'ya looking at????".. says Adrian

Sept 6, 2007

Adrian has been pretty strange in these couple of days... He cried in the middle of the night and when Papa rushed to his room and found out that he's squeezed himself to the corner of the crib leaving no space for him to stretch and turn!!!!! Lucky that he'd fall back asleep once you move him back to a comfy position. But it has happened during his afternoon nap and at least 2 times at night. We've tried to put him in the middle of the crib but then you'd find him at the corner when he's awake. Strange Strange.. maybe he was dreaming of "walking" at night that he slowly pushed himself to the corner??? We have no clue...

Sept 4, 2007

Adrian has been eating and sleeping well at home this past week. His weight surpassed the 10 kg mark and is now at 10.1 kg - that's close to how much he weighted when he was first diagnosed over 6 months ago. I felt like he has stopped growing since 10 months old... At 16 1/2 months old, not only does he not know how to walk, he doesn't even know how to chew (though he has lots of teeth) or how to use a sippy/straw and keep refusing bottles. But I guess these are minor as long as he can regain his health! His counts are still low with Neutrophils at 0.59 and Platelet at 44. I wonder when he's going to make it for RT???

Aug 31, 2007

We spent the last day of August in QMH today. Adrian needed blood transfusion as expected with only 7.9 on Haemoglobin. His Platelet looks rising at 30 and Neutrophils at 0.62. Blood transfusion started at 16:30 and didn't finish until 19:30... The Day Ward closed at 18:00 and we got transferred to K8N for the remaining time. We were ecstatic to have the opportunity to meet up some QM Buddies there. It's funny that we don't want each other to be in K8N but yet, that seems like the only place we could meet up, at least for now until our kids regain their health. Despite the fact that baby didn't nap much in the afternoon, he was content most of the day and he enjoyed playing the drum set borrowed from the CCF (Children Cancer Foundation).

Aug 28, 2007

We had our day trip to QM this morning for blood test & line maintenance. We stayed longer than expected because the blood test result took forever to come back. Adrian's Neutrophils level dropped a bit at only 0.34 and Platelet at 20. Needless to say, he was given another GCSF shot again today. Baby may need both Platelet & Blood Transfusion on Friday if they are not on a rising trend. No wonder other moms told me that the more chemo kids/babies have, the longer it takes for them to recover. It's a little over a month since Adrian had his 5th chemo (July 25th) and his counts still fluctuate.... There's also a fever scare when we got there as Adrian's temp was high at 37.7 C and luckily it dropped later. Will have to monitor him closely at home and our next appt will be on Friday.

Aug 27, 2007

I have recently joined a few of the Support Groups for Sick Children on Facebook. There's a woman who lost her beloved son over a year ago and she's still not over with it. It's hard for me to envision how it feels and I'm in awe that someone could capture so much of the emotion & love in writings/poems. Here's what she says...

"A woman who loses her husband is called widow; a man who loses his wife is called widower; kids who lose their parents are called orphans but there's no word to describe parents who lose their child... that's how bad the loss is!!"

It's so unfair for kids to have gone through these and I just want all these beautiful kids to stay with us forever!!!!

Aug 25 - 26, 2007

It's a busy weekend for Papa & Mama. We bought a Stride-to-Ride Walker for Adrian to practice walking at home, a cellphone that resembles the actual cellphone (actual sample displayed in store) since baby loves gadgets and some baby clothes. Adrian likes to play with all the new toys and hopefully he can start walking soon.

Aug 24, 2007

Adrian's Neutrophils is finally up at 0.99 after having 4 GCSF shots this week. However, his Platelet is still low at 25 and the minimum needs to be at 100 in order for RT to start. Hopefully the peanut skin soup I made today will do the trick. There's a newborn next to Adrian's assigned crib today at the day ward and the parents asked me what disease Adrian had when we were about to leave.... I was hesitant to tell them the truth and so I simply told them he has cancer and left! It gets tiring to answer the same question over and over again (either with medical students or strangers) and it's been painful for me to recall how/when/why/what happened with Adrian....

Aug 22 - 23, 2007

Adrian enjoyed his daily trips to QM in the past 2 days. Maybe that's like his only outings these days (he's only allowed to either stay home or the hospital because of his weak immune system)... it's a short stay there everyday probably lasted an hour for the GCSF shot. Other than the daily hospital trips, Adrian's appetite is growing and he behaved very well at home like a normal kid. I believe he's building up his leg muscles and he has the urge to push some toys & step forward. Baby's newly grown hair & eyelashes has started to fall off again... those hair grew back awhile ago when chemo had stopped awaiting for surgery. Will be back to QM again tomorrow for blood test and see if he's ready for Radiotherapy.

Adrian giggles when looking at his own reflection in the mirror today...

Aug 21, 2007

Just came back from the QMH visit today where Adrian had his routine blood work and central line maintenance. Looks like we'll have day trips to the hospital in the next few days as blood test showed that Adrian is still low on his Neutrophils at only 0.12. with Platelet at 14. He received two units of Platelet today as well as GCSF shot. Will be back again tomorrow for another GCSF shot. It's been over 2 weeks since he had the temporary tattoo drawn on his abdomen for the Radiotherapy, I put a 3M dressing on top just in case the water wears it off when baby is taking a bath. However, I noticed that the mark seemed to have come out together with the 3M dressing. I think the RT people will have to do the simulation part again as they didn't foresee baby would take so long to recover from his counts.

Aug 18 - 19, 2007

The three of us are enjoying our weekend at home!!! Adrian wasn't quite used to his crib the first night and he cried out loud whenever we put him down.... it's another adjustment afterall. Grandma also noticed baby has grown taller... and he's not walking yet at 16 months old....

Aug 17, 2007

Adrian finally got discharged from QMH today after spending 1 1/2 months there. His counts is slowly rising with Neutrophils at 0.25 after 6 shots of GCSF. Baby's Platelet, however, was only at 4 and he needed 2 units of Platelet transfusion before we left. Radiotherapy will commence as soon as his Neutrophils reaches 1. Not until then, baby will have regular check up and blood test every Tue & Fri of next week.

Aug 16, 2007

Just finished making the beds for Adrian at home and hoping he can be home tomorrow! It's the 5th consecutive day where Adrian was given GCSF shot. He will have regular blood test tomorrow to see his counts and he will be discharged if all goes well. Baby is almost back at speed on his diet three weeks after his 5th chemo and so no more IV for him which means he can play freely at the library corner in K8N. For some reasons, Adrian seems to be very moody these days. He used to like socializing with strangers but recently he gets very annoyed at times. And lately, I found that he's getting very scared of Dr. Chiang... he'd close his eyes really tight & then take a deep breath whenever he sees Dr. Chiang making ward rounds. Everyone in the ward knows this is his weakness and they all tease him about it.

Aug 14, 2007

Adrian is feeling better today with no more vomiting & diarrhea. He's slowly eating again but has not resumed his normal consumption. Will have to stay for another day or two in K8N to finish up the antibiotics.

Aug 13, 2007

It's been a rough night for both Papa & Adrian... Adrian had not been feeling well and he threw up 3 times last night. Both Papa & Baby didn't go to sleep until 5am this morning!!! Even though Adrian slept most of the day today, it's hard to keep track of how many times he's vomited. He'd cry in the middle of his sleep and then threw up again... Doc said there's probably some virus going on in his body and will continue to monitor him. Hopefully he'd feel better tomorrow....

Aug 12, 2007

Adrian is feeling better today, at least not as tired as yesterday. His fever has subsided with the help of antibiotics and Panadol and he still needs to continue the full course. Dr. Chiang started the GCSF shot for Adrian today and hopefully it'll help to lift up his Neutrophils a bit. Baby had diarrhea today and some stool was taken for culture and virus testing.

Aug 11, 2007

History seems to repeat itself... Adrian left K8N last night at around 9pm and he went back in this morning before noon!!!! He had fever shortly after breakfast this morning and so we brought him back into his second home, K8N. It's like a vicious cycle that it never ends... he suffered from neutropenic fever whenever his Neutrophils is at its lowest (0.01 as recorded yesterday). So, blood culture along with the usual treatment of antibiotics - baby has to stay for at least another 5 days!!! Baby also received another unit of Platelet... He's feeling very tired most of the day and luckily he still ate.

Aug 10, 2007

Adrian is scheduled to leave for home today, however, blood test result showed that he's neutropenic with Neutrophils at his record low of 0.01!!! Haemoglobin at 7.4 and Platelet at 28. He needed to have both blood and platelet transfusion today and Doc suggested we'd have home leave for the weekend instead of being discharged. In this case, we can return to K8N (but not A&E for the case of discharge) if Adrian develops Neutropenic fever over the weekend. We are due back on Monday for another blood test. Typhoon signal no. 8 was hoisted at 14:30 and Papa got sent home early from work to clean up the house before baby comes home. And yes - we are finally home after spending a month at the hospital. Here's some of the pictures I've taken recently using my cell phone.

Adrian is enjoying his ride...






Adrian is in deep thoughts... "When will I be home??"


Temporary tattoo on baby's Abdomen for upcoming Radiotherapy Treatment.


Bathing Time...

Aug 9, 2007

Looking at the calendar and realized today is just a month since Adrian had his surgery ... while most adults would still be recovering from the incision, Adrian had been through a lot this month - an ultramajor surgery and to top it off, with 2 courses of immunotherapy & his 5th chemotherapy. Adrian had his second BAEP Test today (pre-screening test on May 10th)to check if there's any damage on his ears as he's done with the Cisplatin chemo. The preliminary result from the lady who performed the test told me that Adrian is weaker in receiving high frequency signal when compared to the result from last time. He could hear it only if it's in high decibel. Will check with doctor later for all the details. Apart fron the BAEP test, Baby was not as fussy as the last 2 weeks on feedings. Hopefully TPN will be off and we can leave K8N tomorrow.