April 28, 2008

PBMT - Day 140

Our weekly QM visit started early in the morning and we are home by 10am with a huge bag of toy! Adrian got an Activity House as his 2nd birthday present from the Children Cancer Foundation. Apart from the gift, his blood counts are stabilizing and are in good range. We got a call from the nurse later in the day telling us that the doctor would like to book an appointment with Adrian about removing his central line. However, we'd like to keep the line at least for another 2 weeks til May 13th - the day when Adrian will have another CT Scan to see his liver. If everything goes well as we'd hoped, we'll then be comfortable to remove his central line meaning his treatment has all been done!

April 27, 2008

PBMT - Day 139

It's been a week since we tried mixing red rice with ordinary rice to make soft rice/congee for Adrian. He seemed to like it so far and is accepting it well. We also bought 10 grains congee (with ingredients: organic brown rice, organice millet, soft wheat groat, organic buckwheat, organic oat groat, organic oat flakes, black sticky rice, barley, gorgon fruit and lotus seed) for Adrian to try. We are hoping he could maintain a good diet as it helps to strengthen his immune system and stay strong.

April 23, 2008

PBMT - Day 135

It's a busy week this week and today we went for Adrian's 3rd TCM appointment in Central. Other than Aunt S who came by to say hello, we got a big surprise by seeing Adrian's best buddy from K8N at the clinic!!! We haven't seen each other for a few months and it's the first time we saw her outside of QM. Having mixed feelings seeing the two kids mingling with each other, playing and running in the corridor outside the clinic, who would have thought the two of them have already gone through so much in their lives. This is the first time in months where Adrian can play with someone his age and being social... this is the stimulation he needed most at his age. Adrian got prescribed 14 doses of TCM and as per the doctor, he's supposed to drink them continuously. Mama brought toothbrush this time so the doctor can see Adrian's tougue when she pretended to brush his teeth. The trick seemed to work well in this case!

Today at the clinic - Mama & Adrian with his buddy. (courtesy of Aunt S)

April 22, 2008

PBMT - Day 134

Today followed the exact same schedule as yesterday's except Adrian got waken up a lot earlier (at 6am). We wanted to adjust Adrian's schedule so that he could have breakfast/lunch early and go straight to nap by noon. Reason being he'd have his first Occupational & Speech Therapy appointment (2 in 1) at 14:45 which falls right on his usual nap time. The schedule seemed to work well with Adrian and we got to DK on time for the appointments. Unfortunately, the appointment didn't turn out as fruitful as we'd expected. First, Adrian was too shy that he lowered his head most of the time and the therapists can't really see his mouth not to mention see him eating or talking even in his own baby language (partly because the therapists didn't get into playing with him in the first place and got right into the points when started). Second, the consultation time for the two therapists lasted only 45 mins and the Speech Therapist barely offered any advice as he kept typing on the computer. The OT spoke most of the time and in the end, she suggested a few exercises that we could practice with Adrian at home. We were asked to videotape the way Adrian eats and speaks at home and show them the video on our next appointment which will be in 2 months' time!!! Well, guess we should not expect too much from our next appointment and meanwhile we'd still keep the private ST with Caritas and hopefully that one would yield a better outcome.

April 21, 2008

PBMT - Day 133

Adrian woke up early this morning as if he knew he has to be at QM before 9am! Mama rushed him through breakfast and potty time and we arrived at the ward at 08:30. All the procedures were done in 30 mins and we got a chance to talk to Dr Ho as well. While Dr Ho was there, Mama asked if he could examine Adrian's abdomen as part of the routine check up. Doc also prescribed an ointment for Adrian to put on the dressing area where rash has been developing at this hot weather. The schedule today is a good rehearsal for tomorrow...

April 18, 2008

PBMT - Day 130

Morning Physio session at DK was fun. The focus today was mainly on Adrian's hand motor skills. The Therapist introduced different kind of games to help Adrian such as twisting knobs using his fingers & stacking plastic "doughnuts" etc. Not only do we realize Adrian uses his left hand more than his right hand, the Therapist noticed the same thing as well. Guess it's not surprising to know Adrian would be a left-handed person the end of the day. Because of the proximity to DK, Mama also handed in the application form for Early Childhood Training at Heep Hong this morning. Even though it's going to be a self-paid training (the government subsidized ones have a year long waiting list), we were told the waiting list is about 2-3 months! However, we just want to get Adrian catch up on stuff without wasting too much time waiting on the government subsidized centers. Mama played "nurse" this evening by flushing Adrian's central line and changed his dressing, we enjoyed this comfort of home by doing this bi-weekly procedure that was used to be done at the hospital.

April 15, 2008

PBMT - Day 127

We got the results of VMA/HVA at today's QM visit. Both indicators have dropped significantly after Adrian had abstained from Vanilla flavored Pedisure 48 hours prior to the urine test. VMA now at 2.7 and HVA at 6.4. However, the readings are still higher than previous recorded values in Dec 07 though they are within the normal range. On our next appointment the coming Monday, we are required to arrive at the ward before 9am!!!! Though Adrian had no Norovirus symptoms, he's still considered as "dirty" because the stool sample results haven't come back yet to prove him as negative. There's no longer isolated rooms at the temporarily ward and therefore nurses had asked us to come early to avoid the crowds just so Adrian won't "infect" others!

April 14, 2008

PBMT - Day 126

Adrian is officially 2 years old today! He has been battling with Neuroblastoma more than HALF of his life. Both Papa & Mama wish little Adrian good health and stay away from NB forever!!!! Wishing for good results of VMA/HVA tomorrow, clear scans in May and declare NED for the rest of his life!!!

Looks like he's making a wish....

A little home celebration but no cake tasting for Adrian though...

April 13, 2008

PBMT - Day 125

Believe it or not, Mama wanted to get Adrian a doll house for his birthday. The one we saw earlier in another bloggers' post has led us to believe it's an excellent exercise for symbolic play! It'd be fun to play sleeping or eating in miniature furniture and dolls within the house. However, after checking two Toy'Rus over the weekend during Adrian's nap time, we got something else for Adrian instead. The price for the doll house can get us an Activity Center, a Mega Bloks Cars set and three sound puzzles! We only took one of the puzzles out and the Activity Center for Adrian this evening as it required Papa's expert assembling skills!

Papa is assembling the Activity Center for Adrian.

Adrian can't wait to play on it...

He didn't want to let go of the two sticks the whole night...

April 12, 2008

PBMT - Day 124

Papa decided to post the first time on Adrian's Blog. The only contribution he came up with is to add the TCM treatment details under the Links. Not surprisingly, the details is in Traditional Chinese - we already had a hard time trying to figure out what was written on the hand written prescription, translating the Chinese herbs name into English is simply next to impossible for us.

We also bought a new Corning Vision pot for TCM preparation as we found out that our electronic automatic TCM pot couldn't prepare the unusual volume for Adrian's need (His prescription states that the herbs should be prepared into 300ml of "juice" instead of the 500ml that an adult would normally received).

April 11, 2008

PBMT - Day 123

First time to C6 at QM and found it not so impressive. It's pretty small with only 12 beds there and there's no separate rooms for patients who need isolation. Mama "graduated" from the line care process! She passed the third exam which means we'll only have to go to QM once a week for blood work from now on. No results on VMA/HVA yet, but the next CT Scan has been booked on May 13th!!! We didn't stay at the ward for long and afterwards we went to the Pharmacy to get some prescribed heparinzed saline for line flushing. While we had to wait for our turn to get the stuff at the Pharmacy area, Adrian almost "ran" everywhere and he didn't want to be held hands with Mama at all! Got so tired the end of the day chasing him around. He's simply uncontrollable and treated the hospital as his fair playground!!!

April 9, 2008

PBMT - Day 121

Mama took Adrian to Central this morning for his second TCM appointment. We didn't wait that long (at least a lot better than last time) or maybe it's because we got a visitor to keep us company during our wait. The waiting was simply a photo session where Aunt S who sneaked out from work brought along a camera and shot a few pictures of little Adrian. Other patients in the waiting area must have thought we were crazy!! Sadly, hospital/doctor's visits are the only times Adrian can get out of the house and so everyone is excited to seeing him. The TC was pleased that Adrian was able to finish the medicine last time and he's prescribed a week of TCM for him this time. According to TCM, long term health maintenance is essential for cancer patients and Adrian is no exception. We left the clinic around noon and we took a bus back home! It's the FIRST time Adrian rode the bus... he was very excited and well behaved during the whole journey.

April 8, 2008

PBMT - Day 120

We had our last visit at K8 today because they will be temporarily moved to a new area (C6) starting this coming Thursday for renovation. It was a short stay there and we didn't get assigned a proper room or bed to stay. Mama passed the second time for changing the line dressing for Adrian. She'd have to do it again this Friday and then she'd be done. Also, the VMA/HVA collection was done this morning and hopefully results will be out next week. So, Adrian resumed having Pedisure this evening. We sold the convertible backpack/stroller that was brought from Canada last year as we don't foresee any use of it given the fact that Adrian can now walk and he stays home most of the time. Hopefully someone could put good use of it...

April 5, 2008

PBMT - Day 117

Adrian followed the strict urine marker guideline starting today which means he needs to be abstained from having vanilla flavor Pediasure until next Tuesday. Mama substituted Pediasure with the UHT milk at night feed. We also booked an appointment with the TCM doctor again next Wed for consultation. Since Adrian tolerated the Chinese Herbal Medicine really well, we figured we'd also try TCM for Adrian's good health in alternate weeks with Accutane. Ideally, Adrian takes Accutane for a week and while he stops at the second week, he'd have some Chinese Herbal Medicine for regular health maintenance.

Adrian's having fun with the hula loop.

April 3, 2008

PBMT - Day 115

During our QM visit today, Mama performed the line care for Adrian - she flushed Adrian's central line and changed his dressing in front of the nurse in preparation for doing such at home. Having completed it the first time, she'd have to do it two more times at QM before she can do it at home. The visit today was meant to be a short one without blood work but we didn't leave until noon. What a coincidence that we saw Dr Chan was doing his teaching at the ward and we chose to stay behind and waited til he finished so we can have a short discussion over the issues for Adrian. He didn't offer much advice in the end as he "thinks" the two spots in liver are nothing major. They are too small for a needle biopsy at this stage. As for VMA/HVA, we'll bring the urine sample again on our next visit (next Tues) which means Adrian will have to abstain from Pediasure 48 hours prior. A request for another CT Scan has been sent and we will be advised once the date has been set. Well, those were the action items so far and there's really not much we could do... whether it be good or bad, time will tell!

April 2, 2008

PBMT - Day 114

Surprisingly, we got a call from DK this morning about an appointment being scheduled for Adrian to meet with an Occupational Therapist & Speech Therapist on April 22nd. Thought it'd take months for the first appointment as we were told last week by the social worker and we are glad that it's finally here. Unfortunately, the appointment is going to take place in the afternoon (that's when Adrian usually naps). They don't have any morning appointments in April and the earliest one will be in June. We didn't want to wait much longer and figured we'd settle for this afternoon one. Will see what it brings...

April 1, 2008

PBMT - Day 113

We got two packages of herbal medicine at the TCM visit last Friday for Adrian. Now that Adrian has finished another cycle of Accutane last Sunday, Mama finally found time today and made the herbal medicine for Adrian. Knowing that the Chinese herbs are best known of its bitterness, she added dried dates in and hopefully Adrian can accept it. Mama had a sip before feeding it to Adrian and still found it's not the greatest in taste.... However, to our BIG surprise - Adrian drank the whole thing in less than 10 mins! No wonder people always says patients who have undergone chemo have different taste buds!!!