PBMT - Day 112
Today's visit at QM wasn't as fruitful as we'd thought. Didn't get a chance to talk to Dr Cheuk as he was on vacation. The nurse wasn't able to book us with Dr Chan for a consultation because the April schedule wasn't available yet. Nonetheless, Mama brought up our concerns with another doctor who will in turn discuss the issues with Dr Chiang. While Mama wanted to take part in the line care process (since we'll most likely be keeping the central line for another month or two, we'd like to be able to do line care at home so will only need to go to QM once a week instead of twice a week), she was asked to do it on this coming Thursday instead....
Mar 30, 2008
PBMT - Day 111
Both Papa & Mama have been trying hard to come up something to discuss with our doctors next week regarding Adrian's most recent CT Scan & VMA/HVA results. While we were doing the digging in the web & emails, we came across a urine marker guidelines provided by MSKCC for NB Patients. According to the list, patients must abstain from various food such as bananas, eggplants... and any food containing vanilla! We then realized the elevated VMA/HVA scores might be attributed to the fact that Adrian has started to drink milk after the transplant in Dec 07. The Pediasure that he's been drinking has vanilla flavour. It should be avoided 48 hours prior to urine collection. Surprised we were not given any guidelines at QM regarding this urine test but will definitely mention it to the doctor tomorrow.
Both Papa & Mama have been trying hard to come up something to discuss with our doctors next week regarding Adrian's most recent CT Scan & VMA/HVA results. While we were doing the digging in the web & emails, we came across a urine marker guidelines provided by MSKCC for NB Patients. According to the list, patients must abstain from various food such as bananas, eggplants... and any food containing vanilla! We then realized the elevated VMA/HVA scores might be attributed to the fact that Adrian has started to drink milk after the transplant in Dec 07. The Pediasure that he's been drinking has vanilla flavour. It should be avoided 48 hours prior to urine collection. Surprised we were not given any guidelines at QM regarding this urine test but will definitely mention it to the doctor tomorrow.
Mar 28, 2008
PBMT - Day 109
Papa had a day off and kept us company to DK for Adrian's second physio session. It's good that Papa got a chance to see how much Adrian had enjoyed the session. Mama, on the other hand, met with a social worker in the same building about arranging Early Childhood Education for Adrian. Apparently, the waiting period for government subsidized Early Childhood Education is estimated to be around 10 - 12 months. Adrian may not need the training by then but we figured it won't hurt to be put on the waiting list. The social worker also advised the shortage of Speech Therapists at DK causes a long waiting list as well. So with several phone calls and a few pamphlets from the social worker, we have registered Adrian in Caritas to start Speech Therapy in May. The fee is quite pricy but we figured it'll be all worth it in the end if it helps. Shortly after we got home and fed Adrian, we headed out again for another doctor appointment for Adrian. We took Adrian to see a TCM doctor again to see if any Chinese herbal medicine might help for his recovery. The TCM doctor has prescribed Adrian two doses of Chinese herbs, not sure if he's willing to drink it but we'll make it for him next week after this week's Accutane.
Papa had a day off and kept us company to DK for Adrian's second physio session. It's good that Papa got a chance to see how much Adrian had enjoyed the session. Mama, on the other hand, met with a social worker in the same building about arranging Early Childhood Education for Adrian. Apparently, the waiting period for government subsidized Early Childhood Education is estimated to be around 10 - 12 months. Adrian may not need the training by then but we figured it won't hurt to be put on the waiting list. The social worker also advised the shortage of Speech Therapists at DK causes a long waiting list as well. So with several phone calls and a few pamphlets from the social worker, we have registered Adrian in Caritas to start Speech Therapy in May. The fee is quite pricy but we figured it'll be all worth it in the end if it helps. Shortly after we got home and fed Adrian, we headed out again for another doctor appointment for Adrian. We took Adrian to see a TCM doctor again to see if any Chinese herbal medicine might help for his recovery. The TCM doctor has prescribed Adrian two doses of Chinese herbs, not sure if he's willing to drink it but we'll make it for him next week after this week's Accutane.
Mar 27, 2008
PBMT - Day 108
As usual, we headed to QM this morning for line care and that's where we got a piece of not-very-good news!! The VMA/HVA result has come back and they are higher than the last result recorded prior to transplant in Dec (VMA @ 0.7 and HVA @ 1.0 vs the most recent of VMA @ 5.1 and HVA @ 9.0) though still within the normal range. However, in addition to the two mysterious spots in Adrian's liver plus a slight uptake shown in the most recent MIBG Scan, things are not looking very good at the moment. Just so happened Dr Chan was doing teaching at the Day Ward, Mama interrupted and asked him a few questions. He didn't offer much insight as he was quite behind on Adrian's progress. He said he'd have to look at his files again to bring him up to speed. But like the Statistics rule, it's best to compare another set of result both on VMA/HVA and CT Scan in a few weeks/months to see the trend. So the word again is: Monitoring!!! We'd have to think about our next step... maybe a PET Scan...
As usual, we headed to QM this morning for line care and that's where we got a piece of not-very-good news!! The VMA/HVA result has come back and they are higher than the last result recorded prior to transplant in Dec (VMA @ 0.7 and HVA @ 1.0 vs the most recent of VMA @ 5.1 and HVA @ 9.0) though still within the normal range. However, in addition to the two mysterious spots in Adrian's liver plus a slight uptake shown in the most recent MIBG Scan, things are not looking very good at the moment. Just so happened Dr Chan was doing teaching at the Day Ward, Mama interrupted and asked him a few questions. He didn't offer much insight as he was quite behind on Adrian's progress. He said he'd have to look at his files again to bring him up to speed. But like the Statistics rule, it's best to compare another set of result both on VMA/HVA and CT Scan in a few weeks/months to see the trend. So the word again is: Monitoring!!! We'd have to think about our next step... maybe a PET Scan...
Mar 25, 2008
PBMT - Day 106
Other than the usual QM visit this morning for line care & blood test, it was an unusual day for both Mama & Adrian. It all started with our participation in the Barney Coloring Contest in January (on behalf of Adrian) and we were invited to The Barney Private Party being held for the competition finalists this afternoon. Mama has been contemplating whether to bring Adrian there and after several phone calls to the organizers, Mama is determined to bring baby there so she'd have no regrets! Considering this a "once of a lifetime" experience, Adrian got to meet Barney, the dinosaur that he always sees it on TV, personally and have a souvenir photograph with him, it's priceless! To our surprise, Adrian didn't cry when he sees the big dinosaur and he seemed to enjoy the 20 mins experience at the theatre despite it all occurred during his usual nap time. The organiser was kind enough she gave Adrian a Barney soft toy and wish him good health. Adrian got so tired that he fell asleep in the cab on our way home... he must have thought.. hmm.. was it just a dream or for real??? Wonder if Adrian would remember this incident when he gets older....
Adrian must be wondering... "hmm.. is that you, Barney???"
It's like a dream come true...
Adrian sits patiently with 20 other guests at the Private Party.
Other than the usual QM visit this morning for line care & blood test, it was an unusual day for both Mama & Adrian. It all started with our participation in the Barney Coloring Contest in January (on behalf of Adrian) and we were invited to The Barney Private Party being held for the competition finalists this afternoon. Mama has been contemplating whether to bring Adrian there and after several phone calls to the organizers, Mama is determined to bring baby there so she'd have no regrets! Considering this a "once of a lifetime" experience, Adrian got to meet Barney, the dinosaur that he always sees it on TV, personally and have a souvenir photograph with him, it's priceless! To our surprise, Adrian didn't cry when he sees the big dinosaur and he seemed to enjoy the 20 mins experience at the theatre despite it all occurred during his usual nap time. The organiser was kind enough she gave Adrian a Barney soft toy and wish him good health. Adrian got so tired that he fell asleep in the cab on our way home... he must have thought.. hmm.. was it just a dream or for real??? Wonder if Adrian would remember this incident when he gets older....
Adrian must be wondering... "hmm.. is that you, Barney???"
It's like a dream come true...
Adrian sits patiently with 20 other guests at the Private Party.
Mar 24, 2008
PBMT - Day 105
Adrian's face has almost healed completely from the redness/dryness. The Accutane resumed again today for a week.
Adrian's face has almost healed completely from the redness/dryness. The Accutane resumed again today for a week.
Mar 23, 2008
PBMT - Day 104
The play area is more complete after we bought the set of table and chair from Ikea this Easter weekend. Adrian enjoys sitting there quietly playing his various toys. We also found that he gets more focused when he sits on his chair.
p.s. Mama changed Adrian's line dressing this evening because it got so loose by the sweats. Hope it'd last til Tuesday to QM for the formal line care.
Adrian's spending some quality time with Papa.
AA, where are you going with the laptop?
The play area is more complete after we bought the set of table and chair from Ikea this Easter weekend. Adrian enjoys sitting there quietly playing his various toys. We also found that he gets more focused when he sits on his chair.
p.s. Mama changed Adrian's line dressing this evening because it got so loose by the sweats. Hope it'd last til Tuesday to QM for the formal line care.
Adrian's spending some quality time with Papa.
AA, where are you going with the laptop?
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