Feb 28, 2008

PBMT - Day 80

Another day to QM for routine blood work and line care. Knowing that Adrian will be bored like last time, Mama brought along small toys to go inside the isolated room this time. But what's worst is Adrian didn't even get assigned a bed!!! It's simply an EMPTY room with two chairs! So, Adrian walked everywhere and got so tired by noon. We didn't wait for the blood result today and left as soon as Adrian finished his lunch since we assumed everything is all right. The result for the nasal mucus that was drawn on Monday came back negative - which is good; As for the Norovirus - the nurse kept looking at the screen but there's no mention of the term Norovirus but Rotavirus which got us really confused. The nurse is going to check with the doctor and let us know next Monday. Meanwhile, the Piriton didn't help much and Adrian still has a runny nose and cough though he's starting to pick up his appetite...

Adrian at the Day Ward today.

Feb 25, 2008

PBMT - Day 77

We are back at the Day Ward this morning for blood work & line care. It's the first time where Adrian was required to quarantine in an isolated room within the Day Ward. Though it was only 2-3 hours stay there, Mama was so bored with no TV/toys in the room. Adrian, however, enjoyed the added space and walked every corner of the room. Dr Cheuk came by and advised us that Adrian can start Accutane again today (liver function is improving). Mentioned to the doc about Adrian having cold symptoms, nasal mucus was drawn to see if there's any virus. Results for Bone Scan & MIBG are in... Bone Scan is clear; but for MIBG - result is similar to the previous one that there's still a slight uptake in the right lobe of liver!!! Doc said it's ok but when Mama wanted to ask more questions, Adrian cried out loud as the nurse was putting the tube in baby's nose to collect the nasal mucus. Baby's Neutrophils went up to 3.48 with Platelet at 197 and HGB at 10.6. Looks like Adrian's body produces higher than normal Neutrophils to combat against the cold that he caught, a similar situation happened on the day when we brought Adrian back to K8N last time for diarrhea. Will be back to the Day Ward again on Thursday!

Pix taken today in the Day Ward. Adrian is a size smaller after the diarrhea saga!

Feb 24, 2008

PBMT - Day 76

Adrian has not been feeling well in the past few days. He's developed a runny nose and cough - he coughs more at night and that's bothering him especially at bed time. Will mention it to the doctor tomorrow when we return to the Day Ward for line care & blood work.

Feb 21, 2008

PBMT - Day 73

Though it didn't take long for Adrian to get asleep back home, he woke up a few times in the middle of night crying. Papa, again, needed to sleep beside his crib (like at QM) to soothe him back asleep. Then, there's a fever scare.... Adrian was at marginal temp (low grade fever at around 37.8C) and Mama was so close to bringing him back to QM this morning. Luckily, it was only a scare as the temperature later subsided. After spending 10 days at QM, Adrian had some adjustments to make at home like he's again not used to sleep in his room... and since he's not getting well rested at night/nap time, he fussed at breakfast & dinner time. Let's hope he'd behave better tomorrow.

Feb 20, 2008

PBMT - Day 72

Beyond our expectation, we are HOME as I type! Same routine as yesterday's except Adrian fell asleep by oral sedation (no needles!) for the MIBG return scan. It was a short one today with the main focus on the abdomen. Mama was surprised when the technician said Adrian is done today as she was anticipating another return scan tomorrow or the next day since this has been the pattern in the past! We were told we could leave as soon as we got back to the ward. Though we suspect there's still Norovirus in Adrian's stool sample plus he's still having a couple of loose stools daily, baby has been feeling all right given he eats/drinks well and not being bothered too much by the virus. We are just going to isolate him at home (as usual) instead of K7N!! Adrian didn't nap after the test and got so tired by the end of the day. We arrived home around 21:30 and Adrian fell asleep shortly after....

Feb 19, 2008

PBMT - Day 71

First day of MIBG didn't run quite smoothly.... with an early appointment and the fact that Adrian got up late this morning, he wasn't able to fall into deep sleep for the test with oral sedation. In fact, he was so close to sleep but he got awake everytime when we moved him over to actual bench. The technicians were so patient but after struggling for more than an hour, we all gave up and had doctor gave Adrian two more doses of sedation through IV. Adrian slept through the test and woke up around noon. He didn't nap today and was so tired this evening that he passed out in 10 mins after Mama put him to bed tonight. He will have to do a MIBG return scan tomorrow morning. On the other hand, Adrian seems to tolerate the milk all right that he only had two bowel movements today and they were quite normal.

Feb 18, 2008

PBMT - Day 70

Adrian woke up before 05:00 this morning and stayed awake til the afternoon. He was so tired (and maybe starved too) that it took less than 5 mins for him to fall asleep after sedation. Bone Scan ran smoothly and finished before 15:00. We'll have to return again first thing tomorrow morning for MIBG. Adrian's ALP level is still higher than normal but got better than the result from last Thurs'. Neutrophils went back up to 1.06 with Platelet at 159 and HGB at 10.7. Mama reintroduced milk to Adrian after having stopped for 2 weeks because of diarrhea, instead of Pediasure - it's Nutren Junior this time due to the brand rotation at the hospital. Baby didn't quite like it at first but still managed to drink the usual 8 oz before bed time!

Feb 17, 2008

PBMT - Day 69

The policy at K7N requested all rooms to turn off the light at 20:00 and TV at 20:30, that made Adrian became an early sleeper recently. Since he was well rested and became fully energized as soon as Papa changed him around 02:00 and he stayed up til 05:00 early this morning!!! Despite Adrian didn't get much sleep last night, he's more ok in general than yesterday. He only had two bowel movements today and they were not as bad. He ate well but we still requested to keep his IV in preparation for the MIBG & Bone Scan tomorrow. Adrian will need to fast before the test and the tests may run through the rest of the week. We were hoping Adrian will get better by the end of next week so all of us can go home for some much needed rest!

Mama & little Adrian in K7N - courtesy of the medical student!

Feb 16, 2008

PBMT - Day 68

Adrian wasn't in a good mood today as he passed quite a number of loose to watery stools this morning and his face skin is getting very dry especially around the eye & mouth area. Mama brought the shea butter from home and it helped a bit to relieve the dryness. Baby also had some low grade (37.8 C) fever this morning and later subsided. Talked to the nurse and was told that baby may go home even when the Norovirus is not clear in his stool PROVIDED THAT his diarrhea situation got improved (or manageable) and that he can eat/drink so he won't be too dehydrated from the diarrhea. This, at least, gave us some hope that we won't be here too long...

Feb 15, 2008

PBMT - Day 67

All of us weren't quite used to staying in the isolated unit at K7N. We were under surveillance and have to wear mask 24/7 (even when Papa sleeps at night!!). Adrian still had some mild diarrhea and other than that, he was fine. Mama was surprised the nurse put a new roomate into the supposedly isolated room. Apparently that baby also has NB, he's been receiving 3F8 treatment (same as Adrian) this week and he also has Norovirus!! That's why he got assigned into our room because we share so many alikes'.... It's amazing that baby had Norovirus for quite a long time (approx. 3 months) and the virus is still there!!!!! Wonder when Adrian will become all clear of this virus.... Adrian smooth sailed through the last day of his last course of 3F8 with NO REACTIONS at all. Well, now that he has finally finished off all the treatments but yet, will have to battle against Norovirus this time!

Feb 14, 2008

PBMT - Day 66

Other than Valentines' Day, the big news today is Norovirus was found in Adrian's stool culture!!!! We got transferred out of K8N to K7N for complete isolation this evening. Since Norovirus is very contagious and we were given gowns & masks to wear immediately. The regulations in K7N is a lot more strict than K8N because it's the ward for all infectious disease (e.g. chicken pox etc.). Doc said it may take weeks if not months for Adrian to go completely clear of the virus... that means we are back to the days at QMH again!! Meanwhile, 3F8 continued and there's absolutely NO REACTIONS (not even rash/hives) for Adrian. He was purely having his nap during the entire 3F8 infusion. Adrian's Neutrophils, however, went down to 0.74 with Platelet at 129 and HGB at 9.8. Adrian's ALP level (liver function test) is slightly higher than normal. Doc wasn't sure if it was Norovirus or Accutane that affect it but had Adrian stopped taking Accutane for now....

Feb 13, 2008

PBMT - Day 65

The diarrhea situation seems to have improved a bit (only 3 times today) with no more vomiting. Still waiting for the results on the stool culture but doc said most likely is due to gastroenteritis. Again, NO PAIN at all on 3rd day of 3F8 except some hives appearing on his head/face. They were gone after he was given a Piriton shot. Adrian's in good shape every morning and here's a few pictures from today.

Adrian's playing with the "Mickey Mouse" Fridge....

Feb 12, 2008

PBMT - Day 64

Papa and baby finally had some good sleep last night. Again, Adrian didn't have any pain at all on the 2nd day of 3F8 treatment. It was quite a challenge for one to distinguish between the pain caused by 3F8 or diarrhea - Mama called up the nurse at one point seeing baby in so much pain though she later found out it was indeed the cramps caused by diarrhea. Adrian, however, ended up having an extra shot of Morphine!! Baby also had a slightly severe rash (with a swollen mouth today) than yesterday but still milder than previous 3F8s. Doc said either HAMA have developed inside Adrian's body or his body is "strong" enough to fight against it this time around. Mama has pushed forward a request for the doctor to send a referral for a Neuro-developmental assessment for Adrian at The Duchess of Kent Children's Hospital at Sandy Bay to deal with his speech delay etc. It'll probably take months for a slot to become available....

Feb 11, 2008

PBMT - Day 63

Poor Adrian barely slept last night, so did Papa!! Baby woke up every half an hour to an hour and something was just not right for him, and we guessed it was his tummy (uncomfy tummy due to diarrhea). Adrian had some congee that Mama made before the 7th cycle, also the last cycle, of 3F8 treatment commenced at 13:00. While baby usually experiences pain about 1.5 hours after the drug started, but he got very irritated around 13:45.... All because he had a very bad diarrhea and at the same time, exploded (vomited) all his lunch!!! He threw up twice in total and NEVER experience ANY PAIN AT ALL this time!!! He, however, had some very mild rash and it was gone after he was given Piriton. What unusual though, is Adrian was shivering after the 3F8 & his diarrhea/vomiting for about 15-20 mins. Not sure if it was because he was totally exhausted after a hectic 1.5 hours or something else. He seemed fine after he woke up... the 2nd week of Accutane also started today. Mama took the nurse's advice to use milk to mix the capsules and found that the results were about the same if they were mixed with water...

Here's how Adrian looked in the morning, prior to 3F8

What a day!! Poor Adrian was not in the mood after 3F8, massive vomiting/diarrhea!!

Feb 10, 2008

PBMT - Day 62

We all had a very poor quality of sleep last night. First, Adrian fussed and didn't sleep until almost midnight and woke up a few times at night and needed to change him. Baby woke up around 09:00 but refused to get up!!! He was very cranky, didn't behave like him and insisted to lie on bed. He'd cry out loud whenever we put him up. Therefore he skipped breakfast and all we could do is to feed him water using a syringe. We had no clue and decided to bring him back to the hospital by the afternoon, a day earlier than planned (Adrian is due to go back tomorrow for 3F8 treatment). But as soon as we all got dressed up and arrived to K8N, Adrian was all re-charged!! He behaved like normal again.... We mentioned to the doctor of his diarrhea situation and the fact that he refused to eat this morning, baby was given an IV immediately. Blood was drawn and we'd have to collect his stool for culture and virus testing. Adrian's Neutrophils went up to 3.85 with Platelet at 138 and HGB at 10.9. Baby is still fussy but not as bad as this morning. Let's hope he'd have a good night sleep tonight so that Papa can be spared!

Feb 9, 2008

PBMT - Day 61

Last year today, we left Toronto with Adrian for a Chinese New Year Trip in Hong Kong. Little did we know the original 2 weeks vacation would turn into a year long stay in Hong Kong (or more) with Adrian being diagnosed with Neuroblastoma - one of the deadliest childhood cancer. Adrian is still fighting against it to date.... Baby still suffered from diarrhea that he had an average of 5 - 6 loose stools a day. Papa bought a new DVD player this evening and hopefully it'd help to boost up his interests at meal times despite the diarrhea situation.

Feb 8, 2008

PBMT - Day 60

Papa & Mama heard Adrian crying in the middle of the night and then realized baby had diarrhea. We were busy cleaning the mess and luckily Adrian fell asleep immediately after being changed. However, the diarrhea continued for the rest of the day (a total of 3 times) & he threw up again in the evening... We were thinking of bringing Adrian back to K8N today but the nurse told us to monitor his progress given that Adrian is feeling all right despite the watery stools plus he has no fever. In addition to the diarrhea situation, the DVD player also broke down (yes! Having played too many Barney's etc. at meal times - it finally broke down!!!) and all these contributed to Adrian having a very poor appetite. Mama made some rice water the first time for Adrian to substitute the milk at night feed and they are not as "tasty" & "good" as the ones from the hospital!!!!

Feb 7, 2008

PBMT - Day 59

We brought Adrian out for the first time, not to the hospital, but to the Peak this morning on the First Day of Chinese New Year! Shortly after breakfast, Adrian was all bundled up and he took the whole flight of stairs this time. It was pretty quiet early in the morning at the Peak (this is perfect for the weak baby) and Adrian wore the mask the whole time. We had a walk at the galleria where we finally settled in an Italian Restaurant for brunch. Adrian behaved very well and kept himself entertained while we were eating. It was a pleasant experience afterall and we do look forward to bringing him out more as his body gets better & stronger in the new year. However, Adrian vomited tonight after night feed - we had no idea what went wrong but he seemed to be fine after vomiting. We are going to keep a close eye on him tonight....

Here's a couple of pix we took today using our cell phone:-

Feb 6, 2008

PBMT - Day 58

We spent half day at the Day Ward on Chinese New Year's Eve. Adrian's Neutrophils stayed at 0.94 with Platelet at 128 and HGB at 9.8. We will be back to K8N next Monday for his last course of 3F8 Treatment. Poor Adrian fell down beside the toy bin this evening. His left eye lid got scratched and his left eye would have been hurt if the wound was a cm closer. The Year of the Pig is no good for Adrian where he was in treatment most of the year and he even got hurt on New Year's eve. Let's hope the Year of the Rat would bring all of us good luck & good health, especially for Adrian!

Feb 4, 2008

PBMT - Day 56

We are back to the Day Ward this morning for blood test and line care. Adrian's Neutrophils dropped a bit to 0.91 with Platelet at 147 and HGB at 9.9. Ever since Adrian started walking by himself has made Mama's life a lot easier but he still has no idea how to walk up/down the stairs. The only time he practices is when he's out to the hospital. Today is the day when Adrian actually took the courage to walk up THREE steps in the staircase. He could have walked more but Mama was in a hurry to get him into the car. Looking forward to having him try out more new things - things he got missed out when he was hospitalized....

Feb 3, 2008

PBMT - Day 55

Mama & Papa made a trip to the Chinese New Year Market at Victoria Park this afternoon while Adrian was napping. We bought a few fun stuff (e.g. a balloon shield & sword) for Adrian and he's loving them. Adrian finished the first week of Accutane today and his skin is starting to get dry especially on his face and his bald head. There isn't a remedy other than putting cream on to relieve the dryness and hopefully the skin will get better as the med resumes again on Feb 11th (on alternate weeks).