June 29, 2007

Adrian was well rested at home yesterday and today another day trip to QM for check up and blood test. Almost had a heart attack when we were told Adrian had a very mild high temperature (37.8 C) and the nurse had to recheck again in an hour and if this persisted, he'll have to be hospitalized again!! Luckily, his temp went down a bit at the recheck and we are home for the long weekend. Will be back next Tue and hopefully by then we can meet with the surgeons!

June 27, 2007

Adrian was done with all the tests and results are known. There's both good news and bad news. Good news is that his bones are all clear with no cancer cells!! However, the bad news is the "multiple" liver metastases in both lobes of liver seemed to be scattered and will need the confirmation from the surgeons to see if we can go ahead with surgery. What surprised the doctors are Neuroblastoma seems to present only on the right side of the liver as per the MIBG, whereas CT showed multiple presence in both lobes. There's one possibility that the scattered little "tumors" could be the "scars" that were left over after chemo. So in conclusion, Adrian will be scheduled another test - MRI in the next week or so to check this out. Adrian came home today and will return to the hospital this Friday for blood test.

June 26, 2007

First day of the MIBG test ran smoothly... Adrian slept and woke up right after the test. However, he was given the sedation needle for the CT because it's scheduled right after the MIBG and with the fact that he was just waken up and couldn't fall back asleep on his own. Without much wait, the CT report became available early this afternoon. The tumor in his left adrenal gland and pancreatic head has shown interval decreased in size and calcification is seen. The trickiest part is in the liver... Multiple Liver Metastases is still observed and we won't know until the surgeons view the actual film to determine if the masses are grouped in one area (which is good) or scattered around the liver lobes which makes it harder for surgery. Hopefully we can get to talk to the surgeons tomorrow.

June 25, 2007

Adrian is back to K8N today for his first test - Bone Scan. The Bone Scan was scheduled at 2pm and Adrian had to take sedation fluid prior so he can fall into good sleep. The test took around 45 mins, however, the technician told me to wake Adrian up after about 30 mins because his bladder was so full that it blocked the view when scanning the pelvic bone!!! Poor baby that I needed to pick & wake him up in the middle of his deep sleep and spent another 20 mins to "encourage" him to pee. He didn't fall back to sleep after and a few other people were called to hold him tight when we put him back to the scanner to do the remaining of the test. Baby cried so hard as if there's no tomorrow!! Well, it's not over yet... Another challenge tomorrow for MIBG & CT Scan....

June 23 - 24, 2007

It's the first time being home with Adrian crawling everywhere. Haven't seen him for more than 2 weeks, the grannies were amazed to see the change. Wondered when he's going to make his first step... Baby is well rested at home and slept well at night without being disturbed by the hospital routine work like taking body temperature & BP. Will be back to the hospital again tomorrow by 9am for a series of tests which will run for the next few days.

June 22, 2007

Adrian's motor skills development has been delayed due to his illness. Recently he has just started to crawl at 14 months! He didn't have much space to crawl (only on his own bed) at the hospital and once we arrived home today for home leave this weekend, Adrian enjoyed playing on the floor mat and he became a lot more mobile than the last time he was there (that's more than 2 weeks ago). Baby also started to take the Potassium Iodine solution to prepare for his MIBG test next week. We are all getting very nervous to know how much his tumor has shrunk and if surgery is doable at this point.

Jun 21, 2007

Adrian is still in the hospital today. He had blood test early this morning to see if his Neutrophils level was higher but unfortunately not... it was at 0.12 and in addition, he received 2 units of Platelet transfusion. However, he will most likely have home leave this weekend and be back again next Monday for the exams!!!

June 20, 2007

It's been a busy day today while Adrian was receiving GCSF shot and blood transfusion. No more spike on body temperature, therefore doctor has agreed to see how his Neutrophils level will be up to tomorrow and determine if we can have home leave this weekend.

June 19, 2007

It's pretty quiet in K8N today because it's the Dragon Boat Festival in Hong Kong (i.e. Public Holiday). Adrian has already had the antibiotics for 5 days today but since he still have a very mild high temperature (not fever yet but close...), doc said he should continue it for the whole course (7 days). Blood test results showed that Adrian is low in haemoglobin and he'll need blood transfusion tomorrow. Another GCSF shot today in hopes to boost up his Neutrophils level.

June 18, 2007

Adrian is resuming slowing on his appetite and yet having TPN again. He's refusing to drink water lately. Adrian was given GSCF shot today as per our request because we hope it'd help to lift his Neutrophils levels so he would not be proned to fever again.

June 16 - 17, 2007

Adrian behaved very well the entire weekend. We were by ourselves on Saturday and today Adrian's best buddy in K8N became our room-mate. It was funny to see how the two babies enjoyed watching Teletubbies and talking (i.e. baby languages) together. Adrian didn't have fever anymore but still continued the course for antibiotics. Papa received a mug from the sponsor for Father's Day.

June 15, 2007

Within 24 hours of being discharged, Adrian is back to the Hospital again!!! Baby refused to eat the whole day and later developed fever in the afternoon. We rushed him back to K8N before 5pm, otherwise we'd have to wait long in A&E before coming back to K8N should we arrive after office hours. Well since baby had fever and so we were assigned an isolated room with nobody there (at the moment). TPN will start on Monday and meanwhile doc has given Adrian antibiotics & saline. Adrian also received another 2 units of platelets today.

June 14, 2007

Adrian is 14 months old today. He was finally discharged from QM this evening and will be back for regular blood test and check up next Monday. He needed a unit of platelet before being discharged because he's really low in counts (Platelet at 34 and Neutrophils at 0.02). Adrian is in his recovering phase and he is all ready to go for exams in 2 weeks!!

June 13, 2007

It's the 8th day past Adrian's 4th chemo (calculated from his 1st day of chemo) and I wondered when the mucoscitis is coming. I asked the doctor today if there's any possibility that Adrian will not get mucoscitis this time around and doc said chances are rare but it happens. Will Adrian not get mouth sore this time? I'm in mixed emotion - I'm happy on one hand that he'll not suffer by mouth sore but on the other hand, the chemo is supposed to kill the fastest growing cells (i.e. cancer cells, mucus lining cells in mouth etc.) and in this case, the mucus lining stays in mouth so did the drug work on cancer cells then? Baby has gained back a bit of his appetite and if all goes well, he will be discharged tomorrow.

June 12, 2007

Adrian started TPN today after having less than 500ml of food for 2 days. He weighted less at 8.8kg only. His lower lip got a bit swollen because the red dot that appeared a few days ago has turned out to be a 2cm ulcers. However, baby is still content in some ways and not too disturbed by his lips. His counts are diving into the trough with Platelet at 40s and Neutrophils only at 0.06. I'm going to make him the Peanut Skin soup for tomorrow.

June 11, 2007

We are still deciding whether we should shave Adrian's head... Since almost everyone we come across these days is convincing us that baby would look cuter in complete bald (they claimed that baby doesn't look healthy now with so little hair...). Maybe we are still in denial and I don't dare to shave the hair remaining that Adrian still has. Baby no longer has fever in the last 2 days and so doc has stopped one of his antibiotics, however, he still needs to be hospitalized for at least a day or two to ensure his neutropenic fever doesn't come back again.

June 9 - 10, 2007

It's been awhile since we last spent the weekend at the hospital. Adrian seemed to calm down a bit and he has been feeling tired most of the weekend. He's losing appetite as expected and I think his mucoscitis is coming. Reassessment Bone Scan & MIBG were originally scheduled for tomorrow but we were told today that they will need to be postponed to June 25 because there's some problems with the manufacturer on the MIBG Isotope (i.e. the radioactive substance that will be absorbed by the body to do the test).

June 8, 2007

No words can explain how fussy, cranky & grumpy Adrian was today... he cried so much even the nurse called up the doctor on duty to take a look at him to see what happened. As a matter of fact, I think he just wasn't feeling comfy after chemo. My arms and legs are so sore now as I was holding Adrian most of the day in order to calm him down. Baby had finally moved to a more desirable bed slot this evening and hopefully he likes it better since he'll be staying for at least 5 more days for the antibiotics.

June 7, 2007

While we thought Adrian could leave the hospital tomorrow after finishing his 4th cycle of chemotheraphy, he had fever started this evening which means he'd need to stay behind for at least 5 more days for antibiotics!!! We are going to talk to the ward manager tomorrow about swapping beds as the bed slot that Adrian was allocated to was too crowded in this case (i.e. for an additional 5 more days) as it's beside the tap with heavy traffic. It's quite annoying sometimes especially with an easy-awaken baby!

June 6, 2007

Adrian is getting more used to the warmer room temperature in K8N. He behaved normal on his 2nd day of chemo but started to lose his appetite. We were quite worried after learning two doctors in the team will be away the end of the month and that's when we figure out if Adrian is viable for surgery or not after this cycle of chemo... We'll see how it goes.... Had a conversation with one of the researchers there and she told me that kids with Neuroblastoma tend to be smarter than other normal kids (because of the "over-active" neurons???). Well, I'd rather have a dumb kid who is cancer free...

Jun 5, 2007

First day back at K8N!! Adrian weighted more at 9 kg after spending two weeks of mini-vacation at home. However, he was quite cranky today mainly because of the internal temperature there. The AC doesn't seem to work properly and baby has been feeling very warm throughout the day. He only had an hour nap as he woke up in the middle of his nap with his head all wet. 1st day of his 4th cycle chemo ran smoothly until this evening. The meds started to work its way and Adrian threw up twice at night feed. I do hope he can get a good night sleep tonight and well rested!

Jun 2 - 4, 2007

Special thanks to my Aunt & Uncle Yun who bought the dried peanut skin that we were looking for along with the boiled peanut skin soup for Adrian late Friday night. Adrian had some over the weekend and looks like it does the trick... the blood test results today showed that Adrian's Platelet level finally surpassed the minimum (at 129) threshold of a 100 with Neutrophils at 1.38. He's all ready to go for his 4th chemo tomorrow. Baby is due back to the hospital tomorrow at 08:30 for 4 hours pre-hydration before the meds go in at around noon. Our "vacation" at home has almost come to an end! Here's some of the pictures from the visit today at K8S.

Adrian is still learning to stand...

Mommy & Baby

June 1, 2007

There's a big improvement on Adrian's Neutrophils level after the GCSF shot yesterday. It's now at 0.76 and Platelet at 83. Adrian is scheduled for another blood test on Monday to see the final number and the 4th cycle of chemo should start by next Tuesday on June 5th. The nurse in the ward told us a recipe that many of the kids in the ward are trying - boil "peanut skin" with water - apparently, the "rumor" is it helps the growth of platelet. Papa woke up early today and checked out 4 shops but none of them sell "peanut skin". Will keep on trying!!