Jan 31, 2008

PBMT - Day 52

It was a short visit today at the Day Ward because we need to be home by the afternoon for the home visit. Blood was drawn and the doctor brought the result to us during the visit. Adrian's Neutrophils finally reached 1.00 with Platelet at 123 and HGB at 9.2. Another set of Bone Marrow Biopsy result came out and again it was OK with normal cells only! Mama had a pleasant chat with the 5th year medical students and shared some of her thoughts at the home visit. She was hoping the students could learn the importance of emotional support and adjustments for cancer patient & family through this project apart from offering professional medical advice.

Jan 30, 2008

PBMT - Day 51

Papa picked up the visa today - Adrian has the permission to stay in Hong Kong until Sept 2009. We have no idea how much longer we are going to stay here but at least a couple more months for Adrian to settle after BMT provided all the upcoming tests' results are good before flying long haul back to Toronto.

Jan 29, 2008

PBMT - Day 50

Adrian is back to his normal routine now!!! He walks everywhere at home and is enjoying the added space when compared to the isolated room. It's a bit tricky to dissolve Accutane in water and we are relieved that Adrian seemed to be OK taking it.

Jan 28, 2008

PBMT - Day 49

Mama took Adrian back to the Day Ward for blood test this morning. It's the first time Adrian actually walked to the Register/Admission Office without being held, more felt like he's a toddler instead of a baby. We met lots of old friends there at the Day Ward and many of whom had already finished treatment for a while. They were happy to see us back in the Day Ward (which means we are home and not being hospitalized); However, Adrian didn't seem to enjoy the overwhelming response and he acted so independent that he'd rather play on his own!!! His blood counts are all right with Neutrophils at 0.80, Platelet at 124 & HGB at 9.7. Will be back again on Thurs....

Adrian started the oral medication of 13-Cis-retinoic acid (13-cis-RA) (a.k.a. isotretinoin or Accutane) today. He will take this consecutively for 7 days in alternate weeks for a year. The logic for taking this in alternate week is to minimize its side effects such as cracked lips/skin peeling etc.

Jan 27, 2008

PBMT - Day 48

As we have expected, Adrian totally forgot about our home! He was so scared when we put him to bed last night and took almost 2 hours for him to get asleep. And yet, he didn't have a good night sleep that Papa ended up sleeping beside his crib in the middle of the night (around 04:00) til morning. He didn't like the breakfast that Mama (Mama followed the suggestion by the Dietitian to mix quaker oatmeal with Pediasure instead of the UHT milk) prepared either but loved his fish veggie congee. Toys that were old and he's tired to play prior to BMT appeared all NEW to him!!! We can't believe how forgetful little Adrian is....

Jan 26, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 47

Despite of the fact that the blood result came back not so impressive with Neutrophils only at 0.78 but both Platelet at 101 and HGB at 9.0, we are scheduled to come home this evening!!! Doc said the fluctuating Neutrophils is as expected and from now on, Adrian will have blood test every Monday & Thursday. Our next appointment will be on Jan 28th. Mama had the final touch up this morning before heading to the hospital just to make sure baby's room is clean & spotless. After spending 53 days in the isolated room undergoing BMT, Adrian finally left the hospital this evening!!! We are all very anxious to know if Adrian still remembers his home or his bed at home???

Jan 25, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 46

Another Occupational Therapist came this afternoon right after Adrian woke up from his nap. However, Adrian seems to experience severe stranger anxiety these days especially when he's been isolated close to 2 months only seeing Mama & Papa, familiar nurses & doctors. It took awhile for him to warm up and to cooperate. The O.T. suggested giving baby more different variety of biscuits to try and she also gave Adrian a plastic tube to practice chewing. Mama sat with a group of medical students this evening who will be coming for home visit next week and talked about Adrian. When asked how we coped with the news at the beginning.... it was the most difficult news as parents had ever heard but as time goes by, the news got soaked in and all we want is to get Adrian back healthy & sound. Hopefully this IS the end of our nightmare....

Jan 24, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 45

Adrian's Neutrophils was at 0.92 with Platelet at 93 and HGB at 8.8. Docs said Adrian has been recovering well from their perspectives. According to the doc, Adrian would not have been recovered that "quick" if he were to use his own marrow that would have harvested prior to the BMT (instead of his own cord blood) because the quality may not be that good due to the many chemos Adrian had gone through. The plan now is to let Adrian go home this weekend if all goes well!!! On the other hand, we are one of the "lucky" ones who was chosen for a "home visit" next week! What happens is a doctor will bring along a few other medical students to conduct a "home visit" to patients like us, who have gone through treatment over the course of a year and they'd gather info on Adrian, how our home has been transformed to accommodate Adrian and how it affects the entire household. At the end of the day, medical students will have to do a report/presentation after the visit.

Jan 23, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 44

Having spent over a month and a half at QMH, both Mama & Papa have been worn out.... while Mama has been fighting against her cold/flu, it's Papa's turn this time!!! Poor Papa was so unwell last night that he left Adrian alone in the isolated room and went home at 04:30. Adrian woke up and sat quietly on his bed when Mama arrived around 07:30!!! Doc said Adrian will start Accutane (cis-retinoic acid) next week. The Occupational Therapist finally came this afternoon, however, on a not so preferred time when Adrian was napping! We briefly talked about the problem without Adrian's participation and she'll have to come again in the next day or so....

Jan 22, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 43

Mama wasn't quite used to Adrian not having any blood test today as the result was something she was looking for daily for the past 1.5 months. Doc advised us of the preliminary result of Adrian's bone marrow aspiration yesterday and everything seems to be all right i.e. the marrow shows normal cells and it's growing nicely. Another set of result in regards to his bone will become available in a week's time. Meanwhile, docs have booked series of tests: Final Assessment for Adrian after a year long treatment! First one, Bone Scan & MIBG will be on Feb 18th and CT Scan is scheduled on Mar 11th.

Jan 21, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 42

Adrian had his bone marrow examination this morning. Baby was sedated during the process and woke up around 15:00 when he had his first meal of the day. Adrian has not been eating well in the past few days and I believe he's REALLY tired of the hospital meals that he'd rather have baby canned food these days. The Gerber Gravy Chicken seems to be his favorite lately and he can finish off 2 cans easily. Starting this week, Adrian will only have blood drawn every Mon/Thur/Sat instead of daily blood test. His Neutrophils finally went below 1 and stood at 0.94. Doc didn't give him GCSF shot this time and will monitor to see if it grows back on his own on Thursday's blood test.

Jan 20, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 41

Adrian's Neutrophils was at the benchmark 1.0 today... The nurse specialist advised us that after tomorrow, blood will no longer be drawn daily but rather every Monday & Thursday only. We talked to Dr Chan again about adding a few more 3F8 courses for Adrian and he's agreed to give 1 more 3F8 to baby and he thinks it'll be enough. Though we thought more 3F8s will minimize the possibility of a relapse but he said if the disease progress, it doesn't matter how many 3F8 the patient have received. We also voiced out our concern about Adrian's delayed motor development skills associated specially on his "mouth" in terms of chewing or talking. He's going to refer baby to see an Occupational Therapist for our concern.

Jan 19, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 40

Neutrophils dropped a bit to 1.02 today but still above the 1.0 level. We were given another guideline in terms of how to prepare the clothing/home/almost everything for post-transplant patient after being discharged. It's becoming more surreal....

Jan 18, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 39

Today is "technically" the last day of the 3F8 treatment (though we've been talking to our doctors about adding a few more 3F8 courses for Adrian), Adrian did pretty well as he needed only one extra shot of Morphine and slept for the whole afternoon!!! Out of our surprise, Adrian's Neutrophils went back up to 1.21 today with Platelet on a rising trend at 63. Dr Cheuk mentioned a bone marrow biopsy has been scheduled for Adrian on Monday to assess how his marrow has grown. If Adrian's Neutrophils continues to remain stable, he'll probably be discharged in a week or so. In preparation for him returning home after the transplant, the Dietitian came to meet with Mama late afternoon to talk about how to properly prepare the food specially for a post-transplant person (baby in this case) at home.

Jan 17, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 38

Adrian behaved the same like yesterday though the pain developed later in the afternoon (during flushing). Mama felt awful at the same time while baby was experiencing pain.... Mama broke down out of fatigue and had to call Grandma for an emergency relief. Adrian's Neutrophils was at 1.02 today but HGB went back up to 8.0, so the doctor was right - baby didn't end up getting blood transfusion.

Jan 16, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 37

Unlike the past 2 days, Adrian needed one extra shot of Valium to soothe the pain 3F8 have caused him today. His rash has gotten worse that both his mouth and tongue were swollen. Dr. Chan, however, mentioned that rash appearance is somehow good in a way that HAMA may have developed within Adrian's body. We also asked if there's a possibility of adding a few more courses of 3F8s to Adrian's treatment.... Dr. Chan's reply sounded like it's possible but we'll wait and see. Adrian's visa to stay in HK will expire in a month and so Papa took a day off to go to the Immigration Dept to have it renewed. Can't believe the treatment DID take a year and the time Adrian has spent here in Hong Kong exceeded the time he'd spent in Canada! On day 37 post transplant, Adrian's Neutrophils was at 1.60, though HGB was only at 7.8 - doc said they'll give it another day to see if it'll rebound so the blood transfusion may not be necessary.

Jan 15, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 36

2nd day of 3F8 ran pretty much like yesterday. Adrian experienced severe pain towards the end of the drug infusion and the pain was relieved shortly after he was given an additional shot of Morphine. Apart from the pain, he also suffered from the swollen head and rash over his body. He was so tired that he skipped dinner like yesterday and got waken up by Mama around 20:00 that he finished 3 jars of baby food & 8 oz of milk!! His counts dropped a bit to 2.27 and Platelet is stable at 36. However, he'll need another blood transfusion tomorrow as his HGB is only at 7.9.

Post 3F8 - Adrian's swollen head & rash on his face....

Jan 14, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 35

Adrian received his 6th and final 3F8 treatment this week. The doctor has anticipated baby will experience severe pain due to his current weak immune system. Adrian encountered mild pain and he fell asleep shortly after he was given the pain relief. He, however, was too sleepy (because of the Morphine & Valium) to have dinner and so Mama has requested IV running overnight as supplement for Adrian. Neutrophils skyrocketed at 6.79 after the GCSF shot yesterday. We'll see how Adrian reacts tomorrow.

Jan 13, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 34

Adrian's Neutrophils was able to sustain for 3 days with 1 GCSF shot. It was at 0.51 today and so he received the GCSF shot again. It's been 2 weeks since Adrian's Neutrophils level have been engrafted.
The Nurse Officer told us today that we no longer have to wear protective gown inside the room and no need to change bedsheets daily etc.

Jan 12, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 33

Adrian didn't need the GCSF shot today but maybe tomorrow. His counts are improving with Neutrophils at 1.04 (not below 1 as the trend in the past weeks).

Jan 11, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 32

Neutrophils dropped to 1.43. When Dr Cheuk came to do the ward round this afternoon, he saw Adrian's trend of getting GCSF shot every other 2 days and it'll sustain for another 2 days. He gave me a heads up that this process can take up to 5 months or so in order for the Neutrophils to always stay up above 1 without any GCSF shot. That actually happened before to another patient who went through the Autologous Transplant. His conversation really scared the hell of me.... I sure hope Adrian won't follow this path!!!

Jan 10, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 31

Neutrophils jumped to 5.13 with Platelet at 39. The platelet seems to have stabilized without much drop. Hope it's the same for Neutrophils.

Jan 9, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 30

Neutrophils further dropped to 0.77 and so Adrian was given GCSF shot again. Today is Day 30, it was also the day that he's done with 2 of the oral drugs. Doc mentioned that the 6th round (also the last round) of 3F8 is due and will commence next Monday. Hopefully Adrian's platelet number looks more promising by the time 3F8 starts next week.

Jan 8, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 29

Neutrophils dropped to 1.42 today. Mama reintroduced milk ("half strength" milk - i.e. milk mixed with rice water) again to Adrian after the diarrhea saga. Though he didn't quite like it but Mama made him finish all 8 oz before bedtime!

Jan 7, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 28

Neutrophils went up to 3.04. Adrian is eating well and he's off IV finally. He enjoyed walking in his private room and he got so excited that he didn't even nap today!!!!

Jan 6, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 27

Neutrophils at 0.63 and so Adrian was given GCSF shot again today. It's like a trend where he'll need it every 2 days. He also received 2 units of Platelet.

Jan 5, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 26

Neutrophils dropped to 1.04 today. Adrian is doing well and has no diarrhea.

Jan 4, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 25

It's exactly a month since Adrian was hospitalized. Baby is well behaved this couple of days, maybe he knew that Mama wasn't feeling well... Adrian's Neutrophils level jumped up to 4.01 today after the shot from yesterday. We'll see what tomorrow brings.

Jan 3, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 24

Neutrophils dropped to 0.49 and Adrian was given GCSF shot again. These episodes will repeat again and again until his Neutrophils level becomes stable (moving along the 1.0 range).

Jan 2, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 23

Papa took a day off to take care of little Adrian while Mama was trying hard to recover from her cold at home. Baby's Neutrophils dropped to 1.04 today....

Jan 1, 2008

Autologous Cord Blood (Stem Cell) Transplantation - Day 22

Mama was terribly sick and so she only stayed a while with Adrian and fed him lunch. Baby refused to eat when Papa was feeding him and he's only willing to have water at dinner time. We doubted if it was the drugs that caused his decrease in appetite, Adrian is simply sick of hospital food! His weight dropped to 10.15 kg as he got mild diarrhea. We have to collect his stool sample daily again to see what's going on. On the other hand, Baby's Neutrophils level took a rebound at 3.71 - that's probably the illusions driven by the GCSF shot yesterday.