DAY 125

48-hour blood culture results: negative
(Phew. No infection. Now what caused that spike of high fever on Fri?)

DAY 123

We've got good news today -- the Taiwan donor is a match... Dopey has a donor, yay!

Let me backtrack a bit, since this blog hasn't been updated for quite a while. I went back to work on Sep 3, so between work, visiting Dopey at the hospital, visiting Ashley at MIL's and sleep, there isn't much time for updates. Prepare for a long entry.

We first did a prelim search with the cord blood and marrow database in Singapore. The requirement is a 6-pt match for a bone marrow, or at least a 5-pt match for cord blood. What's in the database is only low-res test results, meaning that we have to activate and call any potential matched donor back for high-res testing to confirm if it were a perfect match (i.e. 6-pt match). We found 1 potential match for cord blood (5-pt) and 6 potential marrow donor matches. Since cord blood is only a 5-pt match, we decided to go with marrow donor testing, hoping to find a full match which is more ideal.

Of the 6 potentials, 3 are males and 3 females. As far as low res results available from the database show, all have equal chances of being a full match. It's better to go with same gender, and the younger the better. So we started with the 1st potential who is a male aged 36 or thereabouts I think. After some days, we were told that he either couldn't or didn't wish to donate his marrow.

So we moved on to the 2nd donor, who is about a year older. 3 days later we were informed that it was 1-pt mismatch, so that's a wasted attempt. They also found many potential matches from Taiwan, and the database there shows slightly more extensive test results, meaning that looking at the list it's more likely for the TW donors to be a match than the 3rd Singaporean male because there are some unknowns in the latter's case. And the youngest on the TW list is only 24, which is better (less wear & tear?). The only catch is that with a TW donor, the cost goes up by some SGD17K. But it's a no-brainer, of course we chose to straight away test the TW donor. And we strike jackpot with this one.

Now with a 6-pt match, they will conducted a further test for 2 more pts. If the 2-pts match, all the better for Ethan. But even if they don't, we can still go ahead with the transplant. And now as the next step toward transplant, they need to draw quite a substantial amount of blood (20-30ml) from him to test the various infection markers like Hep B, HIV etc. So naturally we are worried about him losing that large amount of blood. We'll talk to the docs over the weekend or on Mon before giving them the go ahead. And we will make sure the doc drawing the blood is someone familiar with him, since you know how difficult it is to find a usable vein with a good flow with him. I don't want him to be pricked more than necessary.

Btw, his long line is now on his scalp, above his right ear. It was a scary thought, when the doc says that if she can't find a suitable vein on his arms she will have to go to his scalp. But I guess now we are used to it. Looking on the bright side, with the long line on his head, his limbs are now free and Dopey can now sit fully in the tub (or rather, basin) during bath time. And he does like that.

Oh, and we just shifted out of Hi-D to Ward 75 now, in a similar iso room, but with a large overhead TV (ok, not that big, but when compared to that 14" one we brought in with lousy reception and no cable, this is a big improvement). And there's even Barney and Sesame Street. You shld see Ethan stare at the TV when it's on.

He has been doing so well, getting better and better, that the docs were planning to stop his IV meds, and also TPN once he can handle full milk feeds. Then he had a fever spike yesterday at dawn - 39.5 degreeC. Damn. They took blood yesterday for culture, and stool and urine samples for testing. 24-hour blood culture is negative. Am keeping fingers and toes crossed that he hasn't contracted yet another infection.

Weight (as of yesterday): 4.36kg
Milk Feed: 33ml per hour, abt 18 hrs of continuous feed daily. The target is 36ml/hr before we can take off the TPN

Speaking of weight, there was an upsetting episode with the NJ tube that made him lose some 16% of his weight within 3 days during the 1st week of Sep. As Ethan was still throwing up once or twice then, docs suggested to change his NG tube to an NJ tube. The diff is that the NJ tube goes beyond his stomach into his intestines, with the good intention that he will be less likely to vomit up his milk and medicines.

Unfortunately, 2 things: the process of inserting the NJ tube had him cried for at least an hour bcos they had to basically 'handle' him by turning him etc to get the tube to slip into the twisted intestines, which he didn't like; and somehow he doesn't agree with the tube at all, and continued throwing up, this time green bile. We told the docs the tube doesn't agree with him but they felt it was bcos of the increased milk feed that they are giving him that caused the vomitting, since past experiences with the NJ tube is usually favourable. We agreed to try cutting back the feeds and monitor the situation, but 3 days later, I returned from work, picked him up and realised how light he has become, and i could feel both his hip bones within my single palm. And he became rather weak and listless, very unlike his usual alert self when he is well. And he hasn't smiled for quite a while. That's when i really panicked. And finally we insisted that they pull out the NJ tube and go back to the NG tube. And you know what, he was fine after that.

We did another bone marrow aspiration last week and had fantastic news - it came back negative from the TB-group of germs. Finally. After more than 6 weeks of the anti-TB meds, we finally see progress. And we re-did a CT scan of his brain to check on the 2 lesions: the 1 near his brain stem can't be seen anymore, and the other has shrunk. The radiologist thinks that that is not an infection abscess but seems like some calcium-like formation. So it's good.

Side entry #1:
Russ and me brought Ashley out last Sun, our 1st outing with her after 4 months. She had a whale of a time. We were utterly exhausted. Have you tried chasing after a 17-mth active toddler who has just discovered walking/running and therefore isn't 100% stable on her feet and doesn't run in a straight line? I think the killer is that you are looking DOWN, while trying to follow the undulating route, with sudden brakes and sprints, that is the dizzying part. But i love it. We are going to do that again this Sunday, i hope.

Side entry #2:
I can't resist it, I must document this story Russ told me yesterday:
My MIL was in her kitchen doing her kitcheny stuff. She had a plate of 5 Shou Tao (longevity buns) on the table. Shortly after, she saw that there were 4. "Can't be, I had 5," she thought. And decided to go look for Ashley. She found her squeezed into the small corner between the sofa and the shoe cabinet in the living room. Ash looked back up at her. At first glance, Ash didn't seem to be eating anything. But then on closer inspection my MIL saw telltale black stains around her mouth. Further investigations found that Ash had her arms behind her, holding onto a Shou Tao. Now, how can a wee girl of not yet a year-and-a-half possibly tip-toed and stretched her way to reach the plate on the dining table, knows that she needs to find a secret hiding place to enjoy her find, and reckons that she better hide the evidence when her por-por comes looking for her? There's more... she had actually nibbled and dug her way into the sweet filling from UNDERNEATH the bun, so if you put it back in the plate, the bun looks untouched and whole.

Dad, mum, da gu, sis - thanks for watching Ethan while we were at work, I couldn't have continued working without you there taking care of him, and we wouldn't be able to spend so much precious time with Ashley if not for you. I know how terribly tiring it can be, especially when he is unwell and fussy. I really appreciate how you have temporarily put your life on hold for us, and i hope things will go back to a more normal state in a few months' time. It will take longer than that for Ethan to fully recover, but at least we hope he can go home 3-4 months after his transplant. The transplant WILL work, it must work.

And thank you, friends, relatives & colleagues for your well-wishes, prayers and kind words.

Sleep well Sweet.