March 31, 2007

Felt that baby is feeling better today... let's keep my fingers & toes crossed!!

March 30, 2007

Adrian seemed to calm down a bit today. He's starting to get used to the new Oral Swab and salt water. Don't know when he'll be fully recovered. Platelet infusion again...

March 29, 2007

Adrian was extremely grumpy today. His mouth is getting very serious that his lips got swollen like a pair of sausages. He had fever at night and it took over an hour to draw blood for blood culture. Found out that he's very low on platelet which required platelet infusion.

March 28, 2007

Adrian's face got a bit swollen in the morning. Felt like his mouth condition has gotten more serious. He continued fasting. However, he finally got TPN around 4pm. Dr. BiBi (the Clown Doctor) came today and even she noticed Adrian had lost some weight... poor baby!!

March 27, 2007

Adrian slept almost the whole day with only about an hour of waking time. He didn't eat at all but weighted more than on Sunday (9.05kg vs 8.8kg). Will get TPN tomorrow.

March 26, 2007

Baby didn't sleep AT ALL last night. Very grumpy the whole day and can barely sleep and continued fasting. Talked to the doctor and finally prescribed Morphine to release his mouth sore.

March 25, 2007

Bad sleep last night, baby woke up a few times last night. Decided to bring him back to the hospital this morning for IV. He was so grumpy today. Tried rice cereal and he seemed to be ok. Neutrophils surprisingly at above 1 (i.e. 1.14). Dr. Chow said baby may be suffering from mouth ulcers that made him not willing to drink milk. Prescribed him a week of medication.

March 24, 2007

Papa accidentally scratched baby's eye using a syringe when feeding baby medication this morning. So, we brought him back to K8N for check up. He weighed less today with only 9.1kg. He didn't have a lot of wet diapers as he refused to drink any fluid. Really worried...

March 23, 2007

Home leave started today. Arrived home around 2pm. Baby had a long nap... and he seems to like the dried scallop congee that I made. Worried that he may not get enough fluid though....

March 22, 2007

Adrian finished his first high dosage chemo, no known side effect yet. Baby refused to drink milk + Rice Water. However, he maybe able to go home this weekend if everything goes well (i.e. blood test) tomorrow.

March 21, 2007

3rd day of chemo... chemo will run overnight til tomorrow noon. Met the Nutritionist and suggested to mix NeoSure with Rice Water. Adrian tried it at night feed... better response than milk and drank about 110ml using syringe.

March 20, 2007

2nd day of high dosage chemo... haven't noticed any side effect yet except Adrian continued refusing to drink milk. The Hickman tube on the chest has gotten a bit red when cleaning it today, so the nurse is going to clean it everyday instead of only on Tue & Friday.

March 19, 2007

Started 1st day of chemo... 6 hrs for drug Cyclophosmide, then 18 hrs for Adriamycin.. and go on and on til Thurs morning. The Adriamycin drug has to be put in a dark bag when dripping into the Hickman line because it's sensitive to light. I read it somewhere which says if drugs are sensitive to light, it means it's very STRONG!! Adrian threw up twice at night and he refused to drink milk...

March 18, 2007

We stayed in K8N for the first time on Sunday. Adrian had very poor appetite today... started refusing to drink milk at night. Maybe he knows tomorrow is the big day? Will start chemo tomorrow... anxiously waiting.

March 17, 2007

Baby had normal body temperature today but still needed to apply antibiotics. Adrian threw up 3 times today and 2 times during sleeping which really scared me!! Poor appetite these 2 days. Result for CT is in... good response on chemo, tumor seemed to have shrunk a bit.

March 16, 2007

Reassessment CT today. Adrian threw up most of the sedation fluid and dye but still ended up sleeping because of tiredness. High temp for the first time today and needed to draw blood for blood culture. Amazingly, Neutrophils went up to 1.47. We had a long discussion with Dr. Chan on Adrian's treatment - because 1) the presence of the MYCN gene and 2) the presence of cancer in bone - Adrian's definitely classified as stage 4 with survival rate of only 45%. The chemotheraphy will be switched from low dosage to high dosage because he's in the high risk group and the first one he had in Feb didn't count. The entire treatment will last about a year! It'll be a long battle for the three of us!!

March 15, 2007

Bone Scan result in... Found Cancer in bone!!! Surprise Surprise!!! Treatment remains the same i.e. high dosage chemo. Will draw blood from Adrian tomorrow tomorrow and also the possibility of injecting GCSF shot to trigger the growth of neutrophils as his next chemo is due.

March 14, 2007

MIBG again first thing in the morning. Results will be available in a couple of days. Doc said may need to draw 50ml blood from Adrian in order to lower his haemoglobin level (the other alternative to IV) so he can have home leave??? Adrian is 11th month old today!!!

March 13, 2007

MIBG first thing in the morning and lasted til noon. Didn't realize the radioactive component was so high that the nurse gave me disposable gloves and assigned a special bin to treat Adrian's diapers. As per the nurse, baby's urine may also be contaminated with radiation. Poor baby... anyway, he had good appetite today despite the MIBG.

March 12, 2007

Bone Scan done today, injected dye in preparation for MIBG tomorrow. Doc said Adrian's kidney function deteriorates whenever he has home leave... so does it mean that he can't leave the hospital?

March 11, 2007

Surprisingly, Haemoglobin dropped to 16 and doc agreed to let us have home leave for 1 day. Neutrophils bounced back from trough to 0.14

March 10, 2007

First weekend with baby at the hospital. Pretty quiet as most patients went on home leave. Not much progress on blood haemoglobin level.

March 9, 2007

Haemoglobin level remained the same... Adrian's bum turned better.

March 8, 2007

Haemoglobin continued to stay up high (17.6), no hopes to have home leave this weekend. Adrian didn't have much appetite today...

March 7, 2007

Haemoglobin level went back up a bit... Adrian didn't have good appetite starting late afternoon. "Lights" on BB's bum in hopes to reduce redness as suggested by the nurse.

March 5, 2007

Returned to K8N, haemoglobin remained high... Dr. Chan had Adrian started IV today and hope the excess water can dilute the blood (i.e. lower haemoglobin level).

March 3 - 4, 2007

Left the hospital around noon for Home Leave weekend. Adrian stayed home with us for the weekend. He was content and seemed to be ok in the small crib.

March 2, 2007

Doc said he might let us have home leave the coming weekend. Papa and FIL were both busy buying things getting ready for baby to come home. Noticed Adrian is starting to lose hair as one of the side effects... :-(