Oct 31, 2007

It's Adrian's second Halloween... no trick or treating this year as we stayed home! Adrian continued to make good progress on his walking! He refused to be held a lot of times when he walks and I'm really proud of him being so brave that he's not afraid even when he falls. Here's a pic from last year's:-

Adrian's first Halloween in 2006!
(Special thanks to Mitchie for doing the artwork! :)

Oct 29, 2007

We went to QM Monday today instead of the usual Tuesday (Day ward will be closed tomorrow for exams). Adrian had the blood test and line care. Met with the M.O. at the Day Ward and apparently he still hasn't heard from the Liver Surgery Team yet (he didn't know Prof and I have already spoken). According to the protocol, Adrian should start ABMT next week - but since they are running out of rooms, baby may have to do another 3F8 before ABMT, or Surgery in this case. We'll be back again on Friday and will see what happens.

Oct 27 - 28, 2007

THREE great things happened this weekend:-

1) Received a call from Professor Fan on Sunday morning! Adrian's records & films have been traced and arrived safe & sound on Professor's desk. We had a nice discussion over the issue of baby's liver surgery and once again, he reassured me that it's doable. However, the final say resides on the Oncology Team. He's going to touch base with our doctors tomorrow to discuss it further. I really appreciate his effort to personally follow up on our case.

2) Mama finally bought Adrian a new highchair!!! Believe it or not, Adrian has been using his walker as highchair on feeding. Initially we didn't realize we'd stay in HK this long and we didn't want to spend the money. But feeding baby on the walker has become a challenge since baby moves around a lot these days. That made the purchase is necessary - Adrian seems to like it so far and hopefully it's a good investment and it will make meal time more enjoyable for the both of us.

3) Lastly, Adrian took the initiative to walk unsupported for about 10 steps today!!! This is a huge milestone for Adrian and we do look forward to seeing him actually walk before ABMT! It's about time to start our house proofing as well.... :)

To sum it up, Papa uploaded some of the old/new pictures from his D70 camera... we have mixed feelings seeing baby's old pictures. Here are they...

Adrian is ready for his first flight at Pearson Airport on Feb 9, 2007!!! Little did we know it's the start of our nightmare.... :(((((


At home back in March 2007.




Having gone through 5 chemos, surgery & a couple of 3F8s.. see the difference...


This is how Adrian looks TODAY! The worst is not over yet..

Oct 26, 2007

Haven't heard anything from the Professor's office nor doctors from K8N telling us the progress on the possibility of the Liver Surgery for Adrian - Mama decided to call again to the Prof's office to see what had happened today when we were at the Day Ward. To my surprise, the secretary told me that the team still HAD NOT received the films (i.e. CT Scans, MRI etc) yet from the Oncology team!!!! I was confused simply because I was told the films have been sent for weeks!!! There's got to be some miscommunication between the two departments and in the end, we suffered.. I hate to be nosy, and after a discussion with our M.O. - I did find out who had picked the films up a couple of weeks ago and told the Prof's secretary and hopefully she will follow up with that person. Other than that, Adrian was doing ok on his usual blood test. It's funny that our CCF Counselor didn't recognize Adrian (at first sight) not until she saw me!!! Baby has looked so different in her eyes since she hasn't seen him for a month or so... Yes - his hair, eyelashes and eyebrows are all growing back!

Oct 23, 2007

Mama finally took the initiative to call up Professor's office to follow up on the progress yesterday. We were told that the team has borrowed the CT Scans and films for a week and still hasn't contacted us yet. Afterall, it's still a waiting game! We, on the other hand, are back to the Day Ward today for blood work and line care. Adrian looks a bit different to other moms in the ward because of his growing hair. Mama is happy to find out a lot of them commented that baby has grown a lot (one even used the word "mature" to describe Adrian) since the last time they saw him. We are hoping Adrian can put on as much weight as possible before ABMT. Blood counts showed that his Neutrophils is at 0.73 and Platlet up to 73. They are still considered low (effects after RT) but at least they are on a rising trend. Will be back to the Day Ward again on Friday.

Oct 18, 2007

It's another QM day today... Originally we were supposed to be back every Tue & Fri but since tomorrow will be a public holiday, we were asked to come back today instead. Adrian is in good shape these days with his hair growing nicely. Mama managed to talk to Dr Chan, the NB Specialist, while he was making the ward rounds at the Day Center. He said the absence of pain from baby's last 3F8 treatment means that his body's immune system has started to come back fighting against the antibodies. In other words, it's not a good sign from the medication perspective; On the other hands, it means baby is slowly recovering and becoming normal since he last had chemo in July. The last 3F8 treatment was supposed to be the last one before the ABMT but because of some urgent cases, Adrian may not be able to start his in early Nov and may have to be postponed for another month. Meanwhile, they'll do another 3F8 on him during the time lag but I doubted if it'd be useful to do it now as it was meant to be AFTER ABMT when his body is weak with no fighting power against the antibodies. We will touch base with the Liver Surgery group on Monday to see the progress. I guess IF Adrian did go for surgery, that might solve the timing issue....

Oct 16, 2007

Adrian is back to QMH today for routine blood work and line maintenance. Mama brought along his favorite blanket and meals thinking that we have to stay there long as baby may need blood transfusion today since his haemoglobin level was only 8.2 on Friday (blood transfusion required if haemoglobin is < 8 ). Surprisingly, the blood result came back with good news... though his Neutrophils and Platelet were both dropping due to RT, his haemoglobin level had a rebounce - it's up at 8.9!! So we left the hospital around noon and Adrian had a good nap at home. We still have not heard anything yet from the Liver Surgery Team and we are contemplating whether to make a call to Prof Fan to follow up on the Progress. Doc at the Day Ward said she will follow up again as well. We'll see what happens...

Oct 14, 2007

Adrian still looks tiny even though he is officially 18-months old today! It's quite funny one of the porters at the hospital asked me the other day whether Adrian has reached ONE yet? I didn't blame her as Adrian did look like a year old baby!!!! We bought him a new pair of shoes today since the two old pairs which fit 9-12 months were barely fit with no room left. But can you imagine an 18-months old baby can still wear those 9-12 months old shoes???

Oct 13, 2007

NO PAIN at all today on Adrian's last day of the 3F8 Treatment. Baby, however, suffered from a very severe rash. His whole head got so allergic that there's even a big lump appearing at the back of his head which scared both Mama & Papa! He was given a couple of high dose Piriton to control his allergy and because of the drowsiness, he slept the rest of the afternoon and woke up around 19:30. We then had dinner and got discharged from QMH around 20:30. It's pathetic we didn't get to meet with the doctors from Liver Surgery during our stay this time. Was it because they were so busy and occupied because of the emergency treatment for Lydia Shum?? We have no ideas what the next step is... it'll either be another 3F8 or Surgery (if possible), or the Autologous Bone Marrow Transplantation (ABMT) begins!!! The ABMT will start any time as soon as the isolated room becomes available.

Oct 12, 2007

Don't know if this is good news or bad news... Adrian DID NOT have any pain at all today on his 4th day of 3F8 Treatment!!!! While Mama kept on anticipating for Adrian's pain, yet, baby continued having fun in his crib. Baby only had a very mild rash where he was given a dose of Piriton and that was it! Apparently we were told the drug works if the person did experience severe pain but I'm not sure what happened otherwise. Does it mean there's antibodies developed inside baby's body? Mentioned it to the doc and she said we can't jump into conclusion in this case when it only happened once. We'll see what happens tomorrow...

Oct 11, 2007

Adrian's pain tolerance is getting better... He started to experience pain during the second time of flushing. He got all the pain relief drugs at the end together with Piriton. He had water retention towards the end of day with a big swollen head. Nothing out of the ordinary...

Oct 10, 2007

Adrian didn't suffer much on his 2nd day of 3F8 Treatment. Ward MO was supposed to stand by and prescribed pain relief medication before 3F8 starts for Adrian but somehow it was forgotten! So Adrian was in so much pain for almost 20 mins... By the time doc came, his pain seemed to have subsided. Baby ended up getting only an extra shot of Morphine and Piriton for his rash. He later fell asleep and woke up around 16:00 for his snacks at 17:00. No swollen head as of yet... A doctor from the liver surgery group dropped by today, however, he couldn't find the CT/MRI films here and will have to come again tomorrow. The films were indeed placed at the Day Ward where one of the doctors brought there after the meeting.

Oct 9, 2007

First day back at K8N for the 4th course of 3F8 Immunotherapy Treatment. Baby had a mild, not so severe reaction this time. Apart from the pain and itchiness on face, at least his face didn't get swollen as last time. Docs have finally sent a proper confirmation slip to Prof Fan for further consultation regarding the possibility of a Liver Surgery for Adrian. Docs from K8N are generally against the idea of a surgery as they claimed that Adrian responded well on chemo and the leftovers may only be matured cells or even scars that are benign. We, however, wanted to remove ALL TUMORS if possible. I look forward to meeting Prof Fan in person for further discussion.

Oct 7 - 8 , 2007

Adrian had 1/4 inch new hair growing on his head. His eyebrow and eyelashes are coming out as well. It's the first time after he's finished the 5th chemo in July. We are not overly happy with it since he'll be hairless again during BMT. However, we are looking forward to his hair growing next time because that's when he's done all the treatments!!!!

Oct 6, 2007

10th day of RT: Adrian survived the whole 10 courses of Radiotherapy Treatments!!! Talking about side effects... Fatigue is the one! We'll spend two more days at home and then Adrian will be back to K8N on Tuesday for his 4th course of 3F8 - Immunotherapy Treatment!

Oct 5, 2007

9th (out of 10) day of RT: Second last day of RT... Mama met with Dr Kwong, the Radiologist doctor, today to sum up Adrian's RT effort. Adrian is doing fine so far on RT that he didn't have much side effects as mentioned earlier (i.e. diarrhea, sun burnt on that part of the skin etc.). Because of the fact that liver can't be irradiated, we talked about the MIBG options where Adrian will be given high dosage of radioactive isotope in hopes to kill the remaining liver tumors. However, Dr. Kwong didn't suggest us to do so simply because the MIBG signal last time was very weak... it's probably 1-2% higher than a normal person. She said it's not worthwhile to do so having the whole body irradiated and the effect may not be significant. Had a phone conversation with Dr Chan as well and apparently CT/MRI films will be sent to the liver surgery department and we'll wait to hear from them (p.s. he didn't know I've spoken to Professor already and knew the surgery is viable!).

Oct 3 - 4, 2007

7th - 8th (out of 10) day of RT: The countdown begins as Adrian's RT almost comes to an end. Baby seems to have enjoyed Mama rocking him to sleep these days. "Special arrangements" have been made so I had a chance to chat with a World Renowned Liver Professor today regarding the possibility of a Liver Surgery for Adrian. I was very impressed by his professionalism in returning my call and answering my questions within hours after checking into baby's records. The good news is a surgery is viable to remove the remaining calcified tumors in liver. The next challenge is to convince our Oncology Team of doctors whether to go ahead with the surgery NOW or WAIT until the treatment finishes. Meanwhile, I will meet with the Radiologist doctor tomorrow discussing Adrian's RT Progress and the MIBG Treatment (another option vs surgery to remove the remaining calcified tumors in liver).

Oct 2, 2007

6th (out of 10) day of RT: Having spent the past two days at home, Adrian's schedule was all messed up this morning. First, he fussed at breakfast time because of an early rise; then when he finished the oral sedation before RT, he refused to sleep even though he's extremely tired. Mama was so worried that baby may end up getting Ketamine. The staff at the RT department were nice enough that they found Mama a dark room where she hand rocked Adrian to sleep. Baby had lunch soon after he woke up from the nap but maybe it was just a short one (he usually sleeps >3 hours with the oral sedation but today he slept for 2 hours only), he threw up a bit in the middle of the feeding....