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.