Archive for February, 2012

Day +178

And counting! 22 more days to day +200! Another major milestone. Well, it’s not all be smooth sailing over the last few weeks. I had to go into the hospital 3 times in the last week. First on Monday for my regular clinic sessions, then again on Thursday (more about that later) and then again on Friday (ditto)!

When I went in for my regular clinic last Monday, my blood counts were very low. My neutrophils were at 0.1, which was alarmingly low. Knowing that it wouldn’t have fallen to that level overnight, and knowing the stuff that I was up to prior to the clinic, it’s probably a wonder I hadn’t gotten an infection! So the doctors were obviously concerned, and asked me to come back again on Thursday for another test. Plus they gave me a couple of GCSF jabs to help boost my blood counts.

What scared me most was that one of the doctors actually told me that they’re worried about a relapse and have booked a bone marrow biopsy for Thursday. But he also said that it was very unlikely that it was a relapse, as my other blood results have been very positive. It was simply a precaution.

So on Thursday I dutifully reported into the outpatients department again, got stabbed yet again, but my blood counts were still low. There was some good news though, the CMV levels in my blood were negative and I could stop taking the valganciclovir and the septrin, both of which could cause my blood counts to drop. They also reduced my ciclosporin dose, which would help my immune system fight off this darn cold I’ve had for the last 7 or so weeks.

The downside to all the reduction in antivirals is that I need to take an infusion of Pentamidine every month. The good news it that it’s done on the same day as the clinic, so I only have to come in once a week but I’d have to stay longer.

The biggest bummer is that I still have to come into clinic once a week. I was hoping that I would be seen less often at this stage, but as they’ve just removed my anti-virals completely, it would be ‘wrong not to monitor’ me, according to the consultant. It’s a drag coming to clinic once a week, and it just takes up so much time. Hopefully I can move on to less frequent visits soon.

But for now, looking forward to day +200.



Sophie’s world part 2

Looking back at some of the blog posts and I realised that it’s been quite a journey since that fateful day a year and a bit ago. We’ve all come a long way, especially Sophie who’s grown by leaps and bounds. She’s such a joy now and everyone who’s met her says that she’s such a cute and good baby; very attentive and observant to her surroundings. Makes us a parents proud. 🙂

I thought I update our timeline a little since it’s been 6 months since the last Sophie’s world post. Things have moved on since then and it’d be interesting to see how far we’ve come and how things have changed.

06:45 – Rise and shine. It’s time for Sophie’s morning milk and since she’s been sleeping in another room, we’ve been lazy. We normally wait and linger in bed till around 7am before getting her in for a feed.

07:30 – Back to bed. She’s normally done by this time, and I put her back into the cot while the wife and I both try to get a little more sleep.

07:45 – Wakey wakey 2. It’s time for me to get out of bed and get ready for work. I have my usual breakfast and coffee and read the morning news over the internet. Sophie’s usually asleep but if she’s not, she’ll be squealing and ‘pffting’ in her room. We usually let her be.

08:30 – Wakey wakey 3. The wife usually gets up at this time and prepares for Sophie’s breakfast of baby rice and milk. Sophie’s usually stirring by now but we let her lie in.

09:00 – Work time & breakfast. I leave for work. The wife feeds and changes Sophie while trying to gulp down her tea and toast before they turn cold.

10:00 – Play time. Most days the wife takes Sophie to the local play group in the area. She loves it. She gets to interact with other children and new toys, while the wife meets other mums in the area. Presumably to whinge about their useless husbands. 🙂

11:00 – Milk time. It’s time for Sophie’s mid morning feed. The wife’s usually still at play group and feeds her there.

12:00 – Lunch. The wife feeds Sophie her lunch, usually of pureed carrots or sweet potatoes. Yes, after her milk. She’s quite a glutton. The wife tries to enjoy her lunch as well, but usually ends up having cold pasta or soup.

13:00 – 14:00 Kicktime. The wife lets Sophie play around for a few hours after lunch while she does some chores, hoping that she’ll get tired and doze off eventually. No such luck unfortunately. She’s a little pocket rocket that one.

14:30 – Milk time. Yet another feed. She really drinks a lot of milk.

15:30 – Playtime. If the weather’s good, and if Sophie’s not sleeping, the wife takes her to the local playground for some time on the swings and see saws.

16:30 – Nap time. Sophie’s usually tired out from all the activity and takes a short nap. When I say short, I mean about 10 mins.

17:00 – Back, milk time and dinner! I’m home by this time. And spend a precious few moments with my girls before the chores start. Sophie gets her evening snack and dinner while Daddy prepares dinner.

18:00 – Bath time. This used to be scream time. But now it’s wiggle and fight time. She’s not scared of the water, but she just doesn’t sit still in the tub. Add soap and you get a slippery baby. Tons of fun. The wife takes a shower after this while I read Sophie her bedtime stories.

19:00 – Milk time. Sophie tanks up for the night, and usually falls asleep pretty soon after she has her milk. Daddy takes a shower and makes dinner.

20:00 – Dinner. Finally, some adult time. The wife (exhausted) and I (similarly so) sit down for dinner, rarely together as Sophie stirs quite frequently during this time. But we take what we can. We both sit down to get things done after dinner, or at rare moments, unwind.

23:00 – Milk time. Sophie’s midnight snack so she can last through the night. The wife and I also get ready for bed.

Midnight – Bedtime. We crawl into bed and are asleep almost instantly. Then the alarm goes, and the day starts over again.

Looking back it’s actually quite a change from the time table we had 6 months ago. The big difference is that she sleeps through the night now and the wife spends a lot of time outdoors with Sophie. Exhausting for the wife but good for Sophie.

It’ll be interesting to see what the schedule is like 6 months from now. 🙂 

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5 months

It’s 5 months now since my transplant. I know that cos Sophie’s 6 months old and my immune system is 1 month younger than her. It seems like an eternity to be honest and I can’t wait for the all clear from the doctors. The bad news is that I may have a chronic version of GvHD. I’m starting to get small, brown lumps all over my body.

The consultant reckons that it MIGHT be GvHD, or it could be an effect of the medication and/or radiation on my skin. If it is GvHD, there’s no effective treatment for it. It’s also very itchy, but that’s because it causes the skin to be very very dry, made worse by the very cold weather that we’re currently having in Europe.

His remedy? Moisturise and moisturise very very often. Apply the steroids to the hands and feet, and call them if it gets worse. He did say that he couldn’t tell that my skin had the little lumps. It was only something myself or the wife would know since we’re more familiar with my skin. So as far as he’s concerned, it’s a small problem. He also did mention that the Leukemia almost never comes back when patients have GvHD 100 days after transplant.

I take it as a good sign, but I don’t really want dry flaky skin all my life. But considering the alternative, it’s probably a very good deal.

On a separate note, I’ve added a twitter feed into the blog. I’ve not had much time to update the blog with the baby and work and stuff, so twitter seems like a good way to keep updated on things, albeit in a much briefer way. If you’re on Twitter, you can follow me @funhousediary. 🙂 

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Then and now

It’s just over 4 months since I was discharged from the hospital following the Stem Cell Transplant (SCT). And to be honest, it’s been pretty good so far. I’ve been feeling much better and stronger since then, and I have more energy and can do more things without feeling as tired as quickly. Which also got me thinking about things have progressed since I was discharged.

Then, on 29th Sept 2011 and now, on 31 Jan 2012.

What Then Now
Energy levels Quarter tank. Sometimes less. I nap frequently. Nearly a full tank. I don’t nap during the day. 
Appetite So so Like a horse.
Walking Not good. Legs ache after 10 minutes. Much better. I can walk for 30 – 45 minutes.
Running Er.. me? Run? I do run. Across the road, to catch a bus or for the tube.
General alertness Randomly staring into nothingness. Less random staring in nothingness.
Random fatigue Frequent. Rare.
Working Nope.  5 days a week now. 
Stairs 3 maybe 4 are OK.  Queensway tube. 123 steps straight up. I did that. Office lift broken. Walked up to the 7th floor. Twice! 
Crowded places Er.. not keen. Took the tube, queued for a table for yum char. Not too bad but always wary of sick people.
Diet restrictions Lots and lots. Much less. Only raw meats and fish apparently.

Things have improved. And although I was sidelined with the CMV infection and now am STILL fighting (but slowly getting better) the Rhinovirus, it’s been a positive 4 months. The annoyance is that I need to report to the clinic once a week cos of my viral infections and that my Haemoglobins are low. Apparently the valganciclovir (for the CMV virus) messes up the bone marrow, hence the subsequent fall in Neutrophils, Platelets and now Haemoglobins. They are the last to fall and will take the longest to recover. I hope I don’t need a transfusion. That 2 hours for 1 unit and I will usually need 2 units.

But I can’t complain. There’ve been some bumps, but overall a good 4 months. 🙂