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:

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