July 31, 2007

Adrian had the longest sleep ever... he slept around 15:00 yesterday til 08:00 this morning. He had breakfast real fast as he hasn't had food for almost 24 hours. His weight is dropping from 9.6 kg to 9.1 kg and breakfast was his only meal today. I tried to feed him dinner but soon after he's finished, he vomited EVERYTHING! Will have to mention to doc tomorrow about the possibility of giving Adrian TPN this time. The 3F8 reaction was mild today and Dr. Chan said the chemo last week may have suppressed baby's reaction towards the drugs.

July 30, 2007

Adrian is due back to the hospital this morning. He only had 1 meal (i.e. breakfast) and he threw up twice today. 3F8 started early in the afternoon... despite the pain, his reactions were considered mild this time. He's extremely tired and with the Morphine injection, he slept the whole afternoon and didn't wake up for dinner either. I do hope he can get some good quality sleep tonight and we'll see what tomorrow brings.

July 29, 2007

While Adrian's 5th chemo has come to an end, the side effects have begun to show up... Baby has lost pretty much his appetite and he threw up twice today after lunch and snack. He had a long nap however, and we left the hospital around 5pm for home leave tonight. Docs did a blood test on Adrian prior to 3F8 and it showed that his counts are dropping with Neutrophils only at 0.36 and Platelet at 57. Well, the grannies were happy to see Adrian home and I can manage to upload some pictures online.

Adrian is suffering from fever, suspected drug caused fever from 3F8 last week.

Swollen Adrian... from 3F8

Poor baby is recovering...

July 28, 2007

Got some clarification from Dr. Chan and had a peek at the actual biopsy report, it seems as though the tumor remained in Adrian's liver has been pretty much calcified!! :) They have scheduled Adrian for another MIBG in September and probably a CT Scan to see the progress by then. Adrian is done with his 5th chemo today and post-hydration runs for 24 hours. We may be able to have a day of home leave tomorrow after the post-hydration if all goes well. Second course of 3F8 will start on Monday.

July 26 - 27, 2007

No vomiting yet for Adrian this time around though he's been feeling tired most of the day on chemo. He likes to play with the nursing students (summer time!) in the ward whenever he has the energy. Dr. Wong, one of the surgeons who did Adrian's operation, came to K8N today for another patient and he dropped by and we had a brief discussion on baby's biopsy results. His understanding is that the tumor is considered matured which means it's dormant! And, in conclusion - the prognosis at this point is very favorable???? I, however, am very confused as I kept getting different interpretations of the biopsy report. I may have to ask our M.O. again tomorrow.

Jul 25, 2007

Adrian had a good night sleep last night and his swelling had almost gone by the afternoon. The liver biopsy result finally came in today... the tumor has gotten very "matured" and though it appeared to be heavily calcified, cancer cell is still present! Others (adrenal & pancreatic head) are believed to be all clear! Docs considered it as good news and hopefully this last chemo with the upcoming 3F8 treatment together with the Autologous BMT will help shrink the rest in his liver. We were quite disappointed (hoping to hear that the tumor in liver is all calcified with no cancer cell) but were trying to be optimistic especially on the 1st day of Adrian's last chemo... no reactions as of yet...

July 24, 2007

The first course of Immunotheraphy has finally finished. Adrian has encountered severe pain and allergic reaction as expected. I tried to convince myself that the reactions were somewhat good in a sense that the antibodies will go against the cancer cells in his body. After the 3F8 treatment today, Adrian also had blood transfusion and without much rest, he'll have his 5th chemo tomorrow. Looking at the calendar makes me wonder Adrian is almost half way through his treatment ....I was hoping we can all be home by Adrian's second birthday! Being declared in remission would be the best birthday present for us all.

July 22 - 23, 2007

Adrian had a short day break yesterday and today the 3F8 treatment resumed. He got the swollen head as expected, and with his lips swollen and very itchy in his eyes area. He was in so much pain today that the doc had given him Morphine & Valium (apart from his Morphine infusion). Later in the day when his pain subsided, his got so irritated by the rash, swollen head & itchy eyes. Poor baby was so tired and he finally fell asleep at 19:30. I felt that the Immunotheraphy is tougher than chemo... one more day to go and he'll be done with this first course. There's altogether 5 more courses coming...

July 21, 2007

Adrian seemed to have different reactions on the 3F8 treatment daily. He got very mild rash on his first day, a swollen head on his second day and today, not only had he got a swollen face/head and it got so big to a point that his airway was squeezed. He needed to wear oxygen mask for half of the day in order to breathe comfortably. As one of the less common side effects, baby continued to have very high fever (39.2 C). Luckily, Adrian can have a break tomorrow as the lab is closed on Sunday. Treatment will continue on Monday...

July 20, 2007

Same as yesterday, Adrian developed rash during the treatment and he survived the pain which happened towards the end of 3F8 treatment. The pain had tired him so much that he was able to fall asleep with the additional Morphine dosage the doctor had given him. Surprisingly, he woke up later with a swollen face and apparently this is considered as one of the side effects as per the doctor. Baby also developed fever (at 38.7 C) which means blood culture has to be done as well as applying antibiotics shots for at least 5 days. Looks like we'll be staying in K8N for at least 2-3 weeks this time.

July 19, 2007

Adrian had his first Antibodies Immunotheraphy today. I personally think Adrian had done very well, at least a lot better than what I'd expected. He was still playing in the first 1.5 hours (it takes time for the antibodies to travel to the body through bloodstream)... And all of the sudden, his facial expression changed and the pain happened very spontaneously... I believe as soon as he feels it, it's already unbearable. It breaks my heart when I see him in so much pain... Mixed with crying and screaming, Adrian tolerated for 15 mins and finally the doctor came to give him an additional one long shot of Morphine & Valium. Baby fell asleep after and was very tired for the rest of the day. He also had some mild rash which can be controlled by injecting Piriton. Well, this is only the first day... 4 more days to go...

July 18, 2007

We arrived home for the first time after the surgery at around 9:30pm last night and Adrian immediately went to bed. But he got waken up around midnight and started crying non-stop until almost 4am in the morning. Both Papa & Mama were so desperate and tired, yet couldn't figure what's wrong with our dear son. Apart from this ordeal, we are pretty anxious to the 3F8 treatment which will start tomorrow. I was told by nurses & parents whose kids had gone through 3F8 that the pain generated is pretty unbearable. Adrian will be given high dosage of Morphine, Valium and panadol tomorrow before the antibodies injected into the body.

July 17, 2007

First day back at K8N. We were assigned in Ward 2 where there's altogether five babies including Adrian!!! Adrian passed the blood test as expected and so the 5th chemo will start tomorrow. However, towards the end of the day - we were notified his protocol had changed. Instead of having the 5th chemo which follows the first 3F8 Antibodies Immunotheraphy; they are going to do it the "sandwich" way. Adrian will have 5 days Immunotheraphy first, then 5th chemo (for 5 days), then another 5 days of Immunotheraphy consecutively. Because of the late notice, the lab wasn't able to make the Antibodies for tomorrow. Therefore we had home leave tonight and tomorrow and will be back again on Thurs to start the first immunotheraphy. We'll be looking at spending a total of 15 days at K8N this time.

July 15 - 16, 2007

It's been a week past the surgery and everyone says Adrian is now at least a size smaller than before. He had resumed normal eating in the past two days and so he's finally off IV after the surgery. Baby is more predictable as his routine started to come back today. The surgeons came this morning to take a look at Adrian's incision and how the stitches looked. The nurses took off the dressing and I saw a longggg red line across his whole abdomen. Though the surgeons said the dressing is not required anymore but I insisted to put a new one back on. There's blood stain on baby's clothes without the dressing and it looked very fragile. I'm sure it's ok but I'm so afraid that it might crack.... despite the blood stain, the wound healed quite well as per the surgeons and so we are ok to transfer back to K8N tomorrow!!!!

Doctors from K8N came to look at Adrian today and I mentioned the newest characteristic of Adrian - the yellowish skin color. They attributed it to baby's diet of carrot & pumpkin (which is somehow true) as his blood results showed he's ok (e.g. liver function etc.). Well, baby just loves Pumpkin!!! I will have to substitute other veggies.... Upon our arrival at K8N tomorrow, Adrian will go for blood test and if all goes well, his 5th chemo can start as early as on Wednesday.

July 14, 2007

As requested, we were finally being assigned in one of the semi-private rooms in PSW. In fact, we don't mind to stay in the wards but unlike K8N, there's no BEDS for overnight parents in the ward but in the semi-private room where we can pay an extra $100 - daily rate of a patient, then you will be provided with three meals a day and are allowed to sleep on a bed dedicated for nursing mothers. Adrian began to resume his normal meals today with doctors' permission. His appetite is slowly picking up and he's been feeling tired most of the day. Friends from K8N came to visit Adrian later this afternoon and they noticed baby is quite yellowish for not seeing him roughly two weeks... We didn't quite notice it but will mention it to the doctor tomorrow.

July 13, 2007

After spending 4 days in the ICU, Adrian got transferred back to the Paediatric Surgical Ward this morning. Baby needed to be held the whole day... Mama can't simply leave his eyesight, else he'd cry out really hard. He behaved the same as the last time he was out from the ICU in February. Adrian didn't throw up anymore and continued to take 30 ml of glucose water every 3-4 hours. Docs may increase his intake tomorrow if he is ok. Instead of harvesting baby's stem cells for his own Bone Marrow Transplantation which will take place in a few months time as Dr Ha mentioned, baby will use his own cord blood for the Transplantation! We didn't realize at the time that we'd end up using it this soon (or indeed use it) and we are glad we made the choice last year. Apparently we are also the first parents who requested cord blood retrieval. How sad....

July 12, 2007

Adrian has not been feeling very well since last night. Not that he's painful due to the incision, but more the fullness of his abdomen. He finally had poo this morning after the operation but the doctor said his upper intestine still didn't move very well which causes the excess fluid inside his abdomen that made him uncomfortable. Baby can barely sleep as he kept waking up... he cried in the middle of his nap throwing up about 70 ml of green fluid. The green fluid was mainly the digestive juice and bile juice. However, it'll be his last night at the ICU and he'll be transferred back to PSW for further monitoring.

July 11, 2007

Adrian is making good progress each day... On his post-op 2nd day, he could sit up by leaning against some big pillows and watched his favorite Teletubbies in the afternoon. However, he's still having difficulty passing gas which means no bowel movement as of yet. Since he threw up twice this morning, he was only allowed to drink approx. 30 ml of glucose water today. One thing that amazed me was that his Morphine dosage was reduced in half in the morning and was completely OFF this evening. The foley catheter has also been removed and he's a step closer to recovery.

July 10, 2007

Adrian remained on high dosage of Morphine on his 1st day after post-op. He was bedridden and couldn't move his body very much because of the big incision which runs across his whole abdomen. Baby is still under close monitoring in ICU and doctors will assess his condition again tomorrow to see if he's ok to be transferred back to PSW (I hope not!!). Surprisingly, despite of the heavy Morphine dosage - Adrian was awake a lot this time (maybe he's getting used to the drug after having it so many times). He played with his own fingers and smiled (only lasted for 5 secs) for the first time after the surgery. Checked with Dr. Ho at K8N and the results of his liver biopsy will be out in a week. Given his condition is ok, the 5th chemo & the 1st immunotheraphy 3F8 will start in 2 weeks.

July 9, 2007

Well today is the big day!!!!!!! Surgery lasted only 3 hours (from 1pm - 4pm) and Adrian was immediately transferred to ICU after the surgery. Surgeons informed me that the surgery ran quite smoothly which explains why it took less time than expected. They were able to remove the left adrenal gland and the tumor in the pancreatic head. The one in liver, however, was too deep to cut the whole piece and so they cut it in half and send it to the lab for biopsy. The surgeons suspect it was dead cell (already calcified due to chemo) as it was pretty hard. Let's hope it really WAS a dead cell and so it will be benign to stay inside the body. The same applies to the other two little ones in his right liver lobe. Baby was pretty tired after the surgery and was living on Morphine & Saline. He also had an NG tube running from his nose to tummy for feeding in the next couple of days. Adrian was in good spirit (he's too young to know what really had happened!) and we are so proud of him!

Adrian is ready to go for surgery... photo taken at pre-op

July 8, 2007

We stayed home most of the day except a short visit to QMH this afternoon for the GCSF shot. The OT gown, socks & cap are all ready for Adrian.

Details for the surgery:-
Description: LT Adrenalectomy
Surgeons: Dr. Paul Tam & Dr. Kenneth Wong
Duration: Approx. 6 hours
Purpose: Removal of Left Adrenal Gland where the primary tumor is located. Remove other 'visible' tumors located in pancreatic head & liver if possible.

Tomorrow is Adrian's big day - the day that we've been waiting for since day one of knowing he had NB.... I'm trying to enjoy as much in these few days leading up to the surgery as I'm so afraid of losing him in this battle! Thanks to everyone for their support and kind words. Stay tuned..

July 7, 2007

We were not very impressed by the ward experience we had yesterday. The nurses there were not as compassionate as the ones in K8 and the surgeons ran through the risks and details very quickly. Luckily, the surgery will be performed by the Division Chief and one of the Associate Professors. We went back to the hospital again today for the daily GCSF shot and also the scheduled MRI. MRI lasted about an hour and baby received blood transfusion as well. According to the nurse, Adrian will be sent to ICU after surgery and will later transfer back to the Paedi Surgical Ward (PSW) for monitoring in case internal bleeding happens. It's quite pathetic that we want Adrian to be transferred back to K8N instead, we really hate the PSW.

July 6, 2007

While we've been enjoying our times at home, we got a call from a nurse at QMH around noon today telling us to come in to the hospital this afternoon as surgery has been scheduled to Adrian next Monday!!! We were in total shock.... though we'd love to get the tumors removed for Adrian ASAP but the fact that we still haven't even talked to the surgeons yet not to mention his counts are still recovering - we felt that the surgery was simply lack of planning. We arrived at QMH later to the Paedi Surgical Ward instead of our usual Oncology Ward and met with the surgeons and the anaesthetist. The surgery is considered as "ultramajor" in scale (because it involves adrenal gland, pancreas & liver) and will last approx. 6 hours. Doctor has prescribed Adrian GCSF shot daily until Monday to boost up his Neutrophils level.

July 4, 2007

I've been following a blog about a girl who was diagnosed with Neuroblastoma in Toronto. Though I had no idea what stage she was in but I was happy to know that she was cured less than a year of treatment at Sick Kids. However, it saddened me today when I learnt that her cancer came back in a more aggressive form only three months after she was declared in remission. NB is a very "sticky" cancer and it often comes back if there's residual behind. I do hope surgery can remove all tumors for Adrian and at the same time, my heart goes out to that little girl and I'm sure they have the strength that not many children have.

July 3, 2007

Day visit to QMH and as expected, we still haven't had the chance to meet with the surgeons. Spoke with the doctor on duty in K8S and finally booked the appointment with the surgeons this coming Saturday. Adrian is scheduled to have MRI this Saturday morning as well and we'd have a better idea by then. The preliminary conversation is the surgery is doable but may have to wait a month because it requires the Division Cheif of Paediatric Surgery to perform and he's occupied until August?! Baby is slowly recovering on counts and may need blood transfusion on Sat.

July 1 - 2, 2007

We are happy to stay home for the long weekend. July 1st serves as Canada Day back home and it's also the anniversary of HK handover to China. Adrian is very active now at home moving everywhere. He knows how to climb to stand up position from sitting and have the momentum to coordinate his feet to walk when holding onto the bed rail. With the fact that he's being more active, he gets exhausted in a short period of time which makes good quality sleep in both nap and night time.