Mar 31, 2008

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.

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.

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...

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.

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.

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?

Mar 21, 2008

PBMT - Day 102

We had a "baby" shopping spree on Good Friday and bought many things for our little Adrian. Adrian now owns his first set of Montessori toy, new pair of slippers & a potty seat. We are thinking of getting him a set of table with chairs since he'll be staying home most of the time from now on...

Adrian is "doing his business" on his new potty seat.

Mar 20, 2008

PBMT - Day 101

Papa took a day off before the Easter holiday to accompany us to QM today. We arrived QM around 9am and there Adrian had his usual blood test & line care. Adrian's counts are stable and so one blood test per week is suffice for now. However, we'll still go to QM twice a week for line care. We also met with Dr Cheuk who told us they've checked with the Radiologist who has no ideas what two nodules on Adrian's liver are but he thinks it's non-malignant. He suggested to re-scan in another 3 months to see the progress. The result for VMA/HVA are still pending, we hope to get a favorable result as it is a good indication that the nodules are benign.

Here's a few pictures from today's visit...

Adrian is so concentrated on the TV.

Mar 19, 2008

PBMT - Day 100

Adrian slept through the night last night without Papa sleeping beside him and got waken up by Mama at 08:00!! We think he must be too tired from the physiotherapy session yesterday so he had such a good sleep. Today also marked the 100th day post transplant for Adrian - he'll no longer require the CMV blood test and will follow the regular routine from now on.

Mar 18, 2008

PBMT - Day 99

The first Physiotherapy session at DK went pretty well today. It started at 10am and lasted about an hour. Adrian was a bit shy at the beginning (as always) to meet with the Therapist. The therapist brought us to the kids play area where there are different sorts of toys/equipment for training. First we all played with Adrian's favorite ball... The therapist taught Adrian how to kick the ball using his feet as Adrian only likes to throw it all the time. Next, we tried taking Adrian to walk up/down the stairs, playing with the trampoline for the balancing & jumping skills and encouraging him to run on the mat etc. It was fun and a very good exercise for little Adrian. Time flew by quickly in that hour and Adrian didn't even want to leave in the end!!! The plan now is to bring Adrian there once a week for the exercise with the therapist and so his muscle can be strengthened. Like the Therapist said, kids his age should at least know skills like running, jumping & kicking etc. Hopefully Adrian can catch up with other kids his age in a few months' time.

Mar 17, 2008

PBMT - Day 98

We've been spending Monday morning at QM recently... today is no exception. We arrived at the Day Ward before 10am since Adrian has been an early riser these days (wakes up before 7am everyday in the past few days!). Dr Chong came by, examined Adrian's abdomen and mentioned the tracing of the CT films is in progress and will let us know as soon as they find out from the Radiologist. We also provided Adrian's urine for VMA/HVA testing today and hopefully we will know the result next week. (VMA/HVA are good indications of how active NB cells are in the body)

Mar 16, 2008

PBMT - Day 97

Adrian finished another week of Accutane today. His face has gotten quite red, dry and bumpy in this cycle all because of it. It looks as if he had pimples on his face when looking from afar. We are thankful that the dryness only appears on his face but on the other hand, we wished it happened in other parts of his body so it won't be that apparent. Hopefully his face will heal next week as the medication will stop for a week and resume again on the week of Mar 24th.

Mar 14, 2008

PBMT - Day 95

Adrian returned to the Day Ward at QM this morning for blood test and line care. The result for the CT Scan also came in but it's not something we'd like to hear.... We waited til noon and that's when Dr Cheuk came in and explained the findings for the CT Scan. Everything looks all right with the exception of TWO new "nodules" being found in his right lobe of liver (seg VII) measuring up to 4.5mm in size!!! Nobody knows what those two nodules are... they could be cysts or worse case, another liver metastasis. Docs are going to borrow the films from the scanning department and have the Radiologist take a closer look and see. Originally we were told if everything is all right, Adrian's central line will be removed and we won't need to go to QM twice a week for line care. But now, looks like we are going to keep his line for a little while and see. Doc said most likely they'll have Adrian go for a return scan in another 3 months.... We will have to provide Adrian's urine sample on Monday for VMA/HVA testing. Well, all of the sudden - we felt like we are not going to see the light at the end of tunnel... at least for now!

Mar 13, 2008

PBMT - Day 94

Adrian still stays at home most of the time due to his weak immune system. He enjoys playing with shapes and blocks. Recently, we found out that he's starting to know the differences of shapes. He can pretty much fit the shapes in the respective slots. While we feel happy with him reaching this milestone, he's experiencing separation anxiety these days especially at sleep time. In the past, we had no problems dropping Adrian off his crib and he'd fall asleep on his own listening to his music box. But lately, it takes several trips for Mama to come into Adrian's room every night to reassure him that we are there before he can fall asleep. And what's more - when he awakes in the middle of the night realizing no one was there, he'd stand on his crib and cry out loud until he sees one of us is coming. Papa ended up sleeping beside Adrian's crib in the past weeks and then he'd all be happy. We had no idea what needs to be done to rectify this situation. We are tempted to try out the CIO method...

Mar 11, 2008

PBMT - Day 92

We returned to K8N this morning for Adrian's CT Scan at 11:30am. Adrian has been behaving - got waken up at 07:00 and finished breakfast before 07:45. He's not allowed to eat 4 hours prior to the test (other than drinking the contrast required) because he'll need to be sedated. The rumor is that the contrast tastes disgusting and it's the first time Adrian drank almost the whole bottle of contrast (he drank close to 180 ml)!! When it's the time for Adrian to get to sleep for the test, Mama then realized she forgot to bring his favorite blanket!!!! Adrian ended up getting an extra dose of oral sedation in the waiting area and he soon passed out. The rest ran smoothly and we'll probably know the result this Friday. We'll be back to the Day Ward again this Friday.... Apparently the Day Ward Renovation has to put on hold due to the recent flu outbreak!!! On the other hand, Mama got a call from a physiotherapist at DK and an appointment has been scheduled for Adrian next Tuesday on Mar 18th.

Mar 10, 2008

PBMT - Day 91

We returned to DK this morning for Adrian's visual & hearing assessment. It was the second part of the hearing assessment but unfortunately Adrian didn't get to finish the whole thing AGAIN and he got so inpatient! The reason being he had to sit still and hear different level of the frequencies. He was able to hold up for say 5 - 10 mins and after that he got so inpatient and wanted to move and leave. The technician tried giving him something to play just to make him stay, but he got so concentrated in playing that he basically ignored the sound which made it impossible to do the test. The result so far was OK given Adrian can definitely hear low to medium frequencies but not that good on high frequencies to a certain extent. The technician wasn't able to tell us what range of high frequencies Adrian can hear because that's the part Adrian didn't get tested on. Will confirm results with the upcoming BAEP later at QM. As far as the visual assessment goes, both his eyes have no prescription but his left eye has a slight astigmatic refractive error (.25). (The Optometrist mentioned kids his age usually have about +1.0 on distance vision.) Overall, Adrian did well with no major problems on his eyesight.

Mar 9, 2008

PBMT - Day 90

It was not a very pleasant weekend for us. Adrian fussed at meal time and refused to eat the congee that Mama made the whole day yesterday! He ended up having a total of 32 oz Pediasure for the day. And to top it off, he woke up a few times at night yelling just so he wants Papa to pat & stay beside him. He's giving both Mama & Papa a big headache....

Mar 6, 2008

PBMT - Day 87

We've been seeing staff packing in the Day Ward in the past couple of weeks. At the visit today, we were officially told that it's going to be our last time there at the Day Ward as it will be closed next week for renovation. As usual, Adrian was quarantined in the isolated room where Mama was able to snap a few pictures with baby (see below). Though Adrian now poos normal with no diarrhea, the nurse followed up with the Department of Health and we were advised that Adrian's stool samples still tested Positive on Norovirus!! On the other hand, baby is slowly recovering from his cold with less cough and runny nose. He has healthy blood counts as well, Neutrophils at 4.06 with Platelet at 288 and HGB at 10.7. We will be back to QM next Tuesday for his Final CT Scan. Instead of going to the Day Ward, we'll head over to K8N next time.

Adrian's reading a book... but upside down!!

Mar 4, 2008

PBMT - Day 85

The day at DK (The Duchess of Kent Children's Hospital) was pretty adventurous. First we got there around 10am for our appointment at 10:15am. The nurse there encouraged Adrian to play with the toys in the waiting area just so he gets used to the environment. Though Mama wasn't quite comfortable with Adrian playing the "common" toys but it made sense to warm him up so he won't get fussed during the assessment. The assessment took a little over an hour with the doctor going over her checklist and Mama voicing her concerns. The nurse who is very experienced, at the same time, was playing with Adrian using various tools/toys to assess how he performs. The two of us later joined with Adrian & the nurse and did some more tests on motor skills and symbolic play etc. According to the doc (for which Mama strongly agreed), Adrian's development remained as if he was only 1 yr old. His development seems to have stopped when he was first diagnosed at 10 months old and slowly growing in the past year when he was in active treatment at QM. The action items included referrals for a Speech Therapist (talking problems), Occupational Therapist (chewing problems) & Physiotherapist (improved motor skills such as jumping & taking stairs). We also went for a hearing assessment next door but Adrian was too tired that he got fussy half way through the test. Will have to come back next Monday again to finish up the second half of the hearing assessment as well as a visual assessment. We were very impressed with the overall experience and felt that Adrian is well taken care of in terms of his rehabilitation after a year-long treatment. We expect to have many more visits to DK in the near future; however, the only downside is that The hospital is located in a very remote area (in my point of view) and it's not as convenient as QM.

Mar 3, 2008

PBMT - Day 84

We had our twice weekly visit to QM this morning for blood test and line care. Mama ran into her high school classmate at QM and she got recognized right away! Adrian was again being assigned in one of the isolated rooms. The nurse clarified the Norovirus ordeal and apparently stool samples were sent to Department of Health for testing but not the labs at the hospital. It takes longer for the result to come back meaning we'll be quarantined everytime we are at the Day Ward. A surprise call from someone at the The Duchess of Kent Children's Hospital at Sandy Bay - Adrian is scheduled for a Neuro-developmental assessment TOMORROW at 10:15am! We are happy that the appointment was scheduled a lot earlier than we'd expected. The blood counts result look good with Neutrophils at 2.61, Platelet at 314 & HGB at 10.8. In fact, it's the one of the best results Adrian has ever had since his treatment started a year ago.

P.S. A big relief for Adrian - he finally poo'ed before we left for QM this morning.

Mar 2, 2008

PBMT - Day 83

Adrian finished his 2nd course of Accutane today. The next course starts on the week of Mar 10th. Adrian usually poos 2-3 times a day and this evening, when Mama did the usual trick of making him sitting on his potty to poo, he cried out loud. The same happened at night before bedtime when Adrian was all happy during potty time and all of the sudden, he cried out loud. We think Adrian probably gets constipated!!! He farted the whole evening but nothing came out by the end of the day.

Mar 1, 2008

PBMT - Day 82

Papa & Mama have both gotten sick this weekend. Both of us have been wearing masks even at home though we suspect we got the cold from our little Adrian!!!