Aug 31, 2007

We spent the last day of August in QMH today. Adrian needed blood transfusion as expected with only 7.9 on Haemoglobin. His Platelet looks rising at 30 and Neutrophils at 0.62. Blood transfusion started at 16:30 and didn't finish until 19:30... The Day Ward closed at 18:00 and we got transferred to K8N for the remaining time. We were ecstatic to have the opportunity to meet up some QM Buddies there. It's funny that we don't want each other to be in K8N but yet, that seems like the only place we could meet up, at least for now until our kids regain their health. Despite the fact that baby didn't nap much in the afternoon, he was content most of the day and he enjoyed playing the drum set borrowed from the CCF (Children Cancer Foundation).

Aug 28, 2007

We had our day trip to QM this morning for blood test & line maintenance. We stayed longer than expected because the blood test result took forever to come back. Adrian's Neutrophils level dropped a bit at only 0.34 and Platelet at 20. Needless to say, he was given another GCSF shot again today. Baby may need both Platelet & Blood Transfusion on Friday if they are not on a rising trend. No wonder other moms told me that the more chemo kids/babies have, the longer it takes for them to recover. It's a little over a month since Adrian had his 5th chemo (July 25th) and his counts still fluctuate.... There's also a fever scare when we got there as Adrian's temp was high at 37.7 C and luckily it dropped later. Will have to monitor him closely at home and our next appt will be on Friday.

Aug 27, 2007

I have recently joined a few of the Support Groups for Sick Children on Facebook. There's a woman who lost her beloved son over a year ago and she's still not over with it. It's hard for me to envision how it feels and I'm in awe that someone could capture so much of the emotion & love in writings/poems. Here's what she says...

"A woman who loses her husband is called widow; a man who loses his wife is called widower; kids who lose their parents are called orphans but there's no word to describe parents who lose their child... that's how bad the loss is!!"

It's so unfair for kids to have gone through these and I just want all these beautiful kids to stay with us forever!!!!

Aug 25 - 26, 2007

It's a busy weekend for Papa & Mama. We bought a Stride-to-Ride Walker for Adrian to practice walking at home, a cellphone that resembles the actual cellphone (actual sample displayed in store) since baby loves gadgets and some baby clothes. Adrian likes to play with all the new toys and hopefully he can start walking soon.

Aug 24, 2007

Adrian's Neutrophils is finally up at 0.99 after having 4 GCSF shots this week. However, his Platelet is still low at 25 and the minimum needs to be at 100 in order for RT to start. Hopefully the peanut skin soup I made today will do the trick. There's a newborn next to Adrian's assigned crib today at the day ward and the parents asked me what disease Adrian had when we were about to leave.... I was hesitant to tell them the truth and so I simply told them he has cancer and left! It gets tiring to answer the same question over and over again (either with medical students or strangers) and it's been painful for me to recall how/when/why/what happened with Adrian....

Aug 22 - 23, 2007

Adrian enjoyed his daily trips to QM in the past 2 days. Maybe that's like his only outings these days (he's only allowed to either stay home or the hospital because of his weak immune system)... it's a short stay there everyday probably lasted an hour for the GCSF shot. Other than the daily hospital trips, Adrian's appetite is growing and he behaved very well at home like a normal kid. I believe he's building up his leg muscles and he has the urge to push some toys & step forward. Baby's newly grown hair & eyelashes has started to fall off again... those hair grew back awhile ago when chemo had stopped awaiting for surgery. Will be back to QM again tomorrow for blood test and see if he's ready for Radiotherapy.

Adrian giggles when looking at his own reflection in the mirror today...

Aug 21, 2007

Just came back from the QMH visit today where Adrian had his routine blood work and central line maintenance. Looks like we'll have day trips to the hospital in the next few days as blood test showed that Adrian is still low on his Neutrophils at only 0.12. with Platelet at 14. He received two units of Platelet today as well as GCSF shot. Will be back again tomorrow for another GCSF shot. It's been over 2 weeks since he had the temporary tattoo drawn on his abdomen for the Radiotherapy, I put a 3M dressing on top just in case the water wears it off when baby is taking a bath. However, I noticed that the mark seemed to have come out together with the 3M dressing. I think the RT people will have to do the simulation part again as they didn't foresee baby would take so long to recover from his counts.

Aug 18 - 19, 2007

The three of us are enjoying our weekend at home!!! Adrian wasn't quite used to his crib the first night and he cried out loud whenever we put him down.... it's another adjustment afterall. Grandma also noticed baby has grown taller... and he's not walking yet at 16 months old....

Aug 17, 2007

Adrian finally got discharged from QMH today after spending 1 1/2 months there. His counts is slowly rising with Neutrophils at 0.25 after 6 shots of GCSF. Baby's Platelet, however, was only at 4 and he needed 2 units of Platelet transfusion before we left. Radiotherapy will commence as soon as his Neutrophils reaches 1. Not until then, baby will have regular check up and blood test every Tue & Fri of next week.

Aug 16, 2007

Just finished making the beds for Adrian at home and hoping he can be home tomorrow! It's the 5th consecutive day where Adrian was given GCSF shot. He will have regular blood test tomorrow to see his counts and he will be discharged if all goes well. Baby is almost back at speed on his diet three weeks after his 5th chemo and so no more IV for him which means he can play freely at the library corner in K8N. For some reasons, Adrian seems to be very moody these days. He used to like socializing with strangers but recently he gets very annoyed at times. And lately, I found that he's getting very scared of Dr. Chiang... he'd close his eyes really tight & then take a deep breath whenever he sees Dr. Chiang making ward rounds. Everyone in the ward knows this is his weakness and they all tease him about it.

Aug 14, 2007

Adrian is feeling better today with no more vomiting & diarrhea. He's slowly eating again but has not resumed his normal consumption. Will have to stay for another day or two in K8N to finish up the antibiotics.

Aug 13, 2007

It's been a rough night for both Papa & Adrian... Adrian had not been feeling well and he threw up 3 times last night. Both Papa & Baby didn't go to sleep until 5am this morning!!! Even though Adrian slept most of the day today, it's hard to keep track of how many times he's vomited. He'd cry in the middle of his sleep and then threw up again... Doc said there's probably some virus going on in his body and will continue to monitor him. Hopefully he'd feel better tomorrow....

Aug 12, 2007

Adrian is feeling better today, at least not as tired as yesterday. His fever has subsided with the help of antibiotics and Panadol and he still needs to continue the full course. Dr. Chiang started the GCSF shot for Adrian today and hopefully it'll help to lift up his Neutrophils a bit. Baby had diarrhea today and some stool was taken for culture and virus testing.

Aug 11, 2007

History seems to repeat itself... Adrian left K8N last night at around 9pm and he went back in this morning before noon!!!! He had fever shortly after breakfast this morning and so we brought him back into his second home, K8N. It's like a vicious cycle that it never ends... he suffered from neutropenic fever whenever his Neutrophils is at its lowest (0.01 as recorded yesterday). So, blood culture along with the usual treatment of antibiotics - baby has to stay for at least another 5 days!!! Baby also received another unit of Platelet... He's feeling very tired most of the day and luckily he still ate.

Aug 10, 2007

Adrian is scheduled to leave for home today, however, blood test result showed that he's neutropenic with Neutrophils at his record low of 0.01!!! Haemoglobin at 7.4 and Platelet at 28. He needed to have both blood and platelet transfusion today and Doc suggested we'd have home leave for the weekend instead of being discharged. In this case, we can return to K8N (but not A&E for the case of discharge) if Adrian develops Neutropenic fever over the weekend. We are due back on Monday for another blood test. Typhoon signal no. 8 was hoisted at 14:30 and Papa got sent home early from work to clean up the house before baby comes home. And yes - we are finally home after spending a month at the hospital. Here's some of the pictures I've taken recently using my cell phone.

Adrian is enjoying his ride...

Adrian is in deep thoughts... "When will I be home??"

Temporary tattoo on baby's Abdomen for upcoming Radiotherapy Treatment.

Bathing Time...

Aug 9, 2007

Looking at the calendar and realized today is just a month since Adrian had his surgery ... while most adults would still be recovering from the incision, Adrian had been through a lot this month - an ultramajor surgery and to top it off, with 2 courses of immunotherapy & his 5th chemotherapy. Adrian had his second BAEP Test today (pre-screening test on May 10th)to check if there's any damage on his ears as he's done with the Cisplatin chemo. The preliminary result from the lady who performed the test told me that Adrian is weaker in receiving high frequency signal when compared to the result from last time. He could hear it only if it's in high decibel. Will check with doctor later for all the details. Apart fron the BAEP test, Baby was not as fussy as the last 2 weeks on feedings. Hopefully TPN will be off and we can leave K8N tomorrow.

Aug 8, 2007

For some reasons, Adrian has been quite unpredictable in the past 2 days. His schedule has all been messed up in terms of his nap, play & meal time. He was so sleepy today when Dr. BiBi came (the clown doctor) to play magic to the kids and yet he refused to go napping. The cubicle that Adrian is staying has turned into a baby corner... there's altogether 4 babies including Adrian there. It's sad to see there's been a lot of babies being diagnosed with cancer recently & Adrian is no longer the youngest amongst them. Baby is making progress today on his daily consumption and we are aiming to leave K8N by Friday.

Aug 7, 2007

Adrian didn't have a good night sleep last night (so did Papa) as he got waken up a few times because his best buddy in the same cubicle was crying due to cramping. Baby had a short nap in the afternoon as well where he received 2 units of Platelet. His counts haven't hit the bottom yet with Neutrophils at 0.08 & Platelet only at 15. We are ready to go home in the next few days as soon as Adrian picks up his appetite again since he's almost done with his antibiotics.

Aug 6, 2007

In preparation for Adrian's upcoming Radiotherapy treatment, he had to undergo a process called simulation where temporary tattoo are drawn on his body in order to define where to aim the radiation. Because Adrian was required to lie very still during the process, he was given oral sedation as the regular process today for the simulation appointment this morning. Imagine how could someone fall asleep when there were always people (i.e. staff) moving around playing with him and kept changing beds all the time? I was so mad at the arrangement and Adrian didn't fall asleep after spending an hour there. In the end, the houseman needed to give him 3 needles of sedation and 1 shot of Ketamine (K 仔) for baby to go to sleep!!!! Needless to say, baby was in dream-like state and went on strike for the rest of day. He refused to eat AT ALL (simply out of tiredness & poor appetite) and went to bed around 19:30. I'm starting to get worried how baby will behave on his first RT appointment....

Aug 4 - 5, 2007

It's a pretty quiet weekend here at K8N and what a coincidence that there's only Baby Adrian & his best buddy in that section of the ward. The two babies synchronized their routines of napping and eating. At more than 10 days past his chemo (counted from the 1st day of chemo), Adrian still had a very poor appetite and he had the urge to throw up every time while he's having his meals. He threw up all his night feed last night and almost did the same tonight. Baby's cord blood is scheduled to arrive QMH tomorrow from Toronto, however, doctor will still arrange baby for an OT section to extract his bone marrow as a back up just in case the cord blood wasn't enough for Transplantation. So the next step for Adrian is to get fully recovered, get ready for the bone marrow extraction when his counts go back up again.

Aug 3, 2007

Adrian is finally done with his second course of 3F8 treatment today and originally he was going to be discharged tomorrow. However, he developed neutropenic fever early this morning (his counts are low at 0.16 and platelet only at 10 where he needed platelet transfusion today as well), let alone he hasn't been eating in the past few days - therefore, he will need to stay for at least another 5 days for antibiotics!!! The R.O. (Radiology Oncologist) came today to discuss baby's upcoming radiotherapy treatment. Adrian will have a total of 10 RTs (Radiotherapy Treatments) on his left abdomen both front & back incl. his lower part of the spine for a total dosage of "15 degrees". Possible long term effects includes: Poor left Renal & Liver function, Intestinal adhesions and he will be shorter than others as the radiated part of the spine may not grow normally. Well, we don't have a choice... as long as his life is spared!

Aug 2, 2007

Adrian suffered more today when compared to the past three days... his pain got severe and he needed an extra shot of Valium for pain relief. All of us (patients) were excited as Dr. Chiang will be back tomorrow to do the ward rounds this month. I have tons of questions for him such as the timeframe for Adrian's upcoming Radiotherapy & MIBG treatment etc. On the other hand, Dr Cheuk told me that baby's cord blood will arrive Hong Kong next Monday for his Autologous Bone Marrow/Stem Cell Transplantation in 2 months time.

Aug 1, 2007

Doctor has started TPN on Adrian today as per our request. Baby slept a lot these days with roughly 2 - 3 hours of awake time daily. He's so tired partly because of the after-effect of last week's chemo as well as the pain relief medication from 3F8. We've been here at QMH for almost a month.... Hoping to go home on Saturday after the second course of 3F8 if Adrian resumes his appetite.