Archive for June, 2011

Nursery Update – 30 June 2011

It’s almost exactly 6 weeks to Peanut’s due date, and we’ve been pretty busy ordering stuff for the nursery. We’ve got most of the large stuff nailed down, like the cot, changing bench and the dresser. We also have the car seat, ISOFIX base for the car and the push chair ordered so we’re left with the smaller but no less significant stuff. 

This is what the nursery is looking like now, but hopefully it will take shape within the next couple of weeks. We plan to put together most of the stuff over the next few weekends, but that also means figuring out the layout of the room and getting more things together. 

Luckily for us, we were able to purchase most of the things we needed online, and as most retailers offer free delivery (or for a small fee), we were able to shop without leaving the flat. Very handy for a pregnant woman (can’t walk very far) and an immunocompromised person. 🙂

Thanks to the generosity of the wife’s childhood friends’ parents (phew!), who gave us some Amazon vouchers, we were able to make some major purchases for the nursery without spending too much. We managed to get (in the picture above) a cot (large box by the door), a changing unit (green box), a breast pump (white box above the green box), a thermometer (blue box above green box), the ISOFIX carseat base (large box at the bottom of the picture) and a host of other books, bottles, teats, creams etc from Amazon. 🙂

We still need the mattress, sheets, towels, sanitisers, and so on, so there are loads more to do and loads more things to get, but we’re getting there. Hopefully we’ll get the nursery sorted in the next couple of weeks. 🙂 

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One of the biggest challenges that I can probably think of when spending all this time at home is to figure out what to make for lunch. It’s a hassel to head out to get something, but at the same time, it can be quite a chore to cook something just for me. This will change when the wife is home on maternity leave, but for now, it’s me trying to make lunch for me. 🙂 And I have a few favourites to make.

I happen to have a leek and some bacon scraps at home. So I decided to make a leek pasta for lunch today. It’s yummy but as far as pasta goes, takes a little bit longer than usual as the leeks take some time to cook.

Ingredients are pretty straightforward; pasta, leeks, bacon bits, garlic and some onions. You can use chili flakes too but I decided not to use it.

The bacon bits are browned in a pan, and left to sizzle till they’re nice and crispy. Add the garlic and onions, stir well. Add the chopped leeks, mix well. Add also a small cup of stock, wine or water and let it simmer for 15 – 20 minutes, until the leeks are soft. In the meantime, start cooking the pasta. 

The leeks should look a little browned, and soft and tender when it’s done.  

When the pasta is done, add it to the pan and remove it from the heat. Mix well and grate some parmesan cheese on top. Dish up and serve with more grated parmesan. Yumm. 🙂 

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Day chemo

Since I’ll be home for the next 2 or so months, and having declined to be hospitalised for some in-patient chemotherapy before the transplant, the haematology consultant arranged for some outpatient chemotherapy while I am waiting for the transplant, just to make sure that the Leukemia stays away.

It all sounds straightforward, but it’s really more complicated in practice. For starters, he couldn’t pluck a treatment from the air and let me do it. He has to follow a treatment protocol and in this case, he decided to go for the first Maintenance chemotherapy phase under the UK ALL XII. This is all good, except that it’s supposed to last 6 months. I have 2 months before transplant. After he juggled the numbers about a bit and made a few adjustments, this was what he came up with.

Vincristie –  a fortnightly infusion, given through the line. This will need to be done in the day chemotherapy ward in the hospital. This will be done on Days 1 (24 June), 15, 29 and 43.

MCP – a daily dose of 3 pills. I have these pills at home, and the usual cytotoxic warnings that come along with it.

MTX – this is a big dose. I have to take 14 (yes, it’s not a typo) pills once a week. As it’s also a chemo drug, there’s the usual skull and crossbones with it.

Prednisolone – this is the steroid that I had in the first course. This is where it gets complicated. I have to take 4 pills, 5 times a week, after days 1, 15, 29 and 43. So this goes in conjunction with the Vincristie infusion.

Valaciclovir – this in an antiviral drug. Simple, 1 tablet twice a day.

Septrin – an anti bacterial drug, 2 tablets on Monday, Wednesday and Friday.

It’s all too much to remember so I had made a chart to help me remember.

At least it will take any errors due to guess work and anyone who sees this chart can see what I need to take when.

Also, as the drugs are toxic, I’ve got a receptacle to store all the gloves, dispensing cups and blister packs when they’re used.

This is the second one. I ‘locked’ the first one by mistake when I was experimenting with it. Oh well. 🙂

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Transplant update – 27 June 2011

I am scheduled to be admitted for my transplant on 1st September 2011, give or take a few days. All systems are go, and the donor (from Taiwan, and a bloke, so I am told) has been informed. Pending medical and other tests, the harvesting should start about a week after I am admitted into the hospital.

So from now till then, I am supposed to report to the hospital 2 full days in July for counselling (i.e. scaring the crap out of you) and further tests (more scary stuff). This is to make sure that the patient knows all the risks and procedures for the transplant, and the tests are to make sure that the patient is well and strong enough to recover from the transplant.

I am also due for mild chemotherapy every 2 weeks, for 8 weeks. This will be a dose of Vincristie, something I’ve had before in Course 1 so it’s not too bad. I’ve also got to swallow a bunch of pills every day for a week, every fortnight. The pills may make me neutropenic, in which case I have to be very careful with infections and catching bugs, especially when I am travelling on the tube. But I’ll deal with that when it happens.

The consultant wanted to keep me in the hospital for an in-patient chemotherapy treatment, but I resisted on the basis of the baby. And I am glad I did. Spending another month in the hospital is really going to drive me round the bend. Anyway, the transplant is going ahead, pending both me and the bloke passing health checks. And then it’s onward to the road to recovery. And beating this blasted thing forever.

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4D Scan

The wife and I went for a 4D scan recently. Those of you who don’t know what that is, it’s a 3D ultrasound rendering of the baby in the uterus. The reason why it’s called a 4D scan is that the scan also includes the baby’s movements (if any) in the uterus.

Feeling very excited we drove over to Harley Street (the King’s Speech anyone?) on Saturday afternoon for the scan. The wife and I were both exhausted from the drama the previous day, and from waiting at the Eurostar terminal in Brussels and the train ride earlier that day. But we have been waiting for this day ever since we found out about the 4D scan, and tired or not we were determined to make it there.

It felt like quite an odd location for a medical-ish clinic to be honest, as the clinic was in the same building as a bunch of private (and very expensive) apartments. The scan itself was done in a very small room, with the usual sonographer and the ultrasound machine. It was quite amazing.

The picture was quite fuzzy, but we could see Peanut’s face, hands, feet, legs, neck, shoulders, and we could even see her moving. She was squirming, shifting, moving, yawning, and moving her hands around to get into a more comfortable position to continue her sleep. 🙂 The wife and I can’t make out if she looks more like me or her at this stage.

My daughter the contortionist. We couldn’t make out where her face started and her limbs ended. Until the sonographer pointed it out to us. 

We have determined that she has the wife’s chin. Here she is, moving into position to get more comfortable to continue her sleep.

We also reckon that she looks like the wife from the side. The only thing she has that’s mine, is my nose. Specifically the lower part of my nose. 🙂 

It’s quite extraordinary to be able to see our little girl moving and kicking around before she’s born. The best thing was the video that we got from the scan. Before this I’ve always imagined her moving around in the wife’s belly but now I’ve got a picture in my head of her moving. 🙂 And it’s good. Highly recommended, I should say.

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It’s been a busy and eventful few weeks for the wife and myself. We had planned to take a trip down to the Lake District together with the wife’s brother (visiting from the island prison Singapore) and his wife, but decided instead to head to Amsterdam. Cos the wife hadn’t been there before and wanted to see windmills. And clogs. And the famous fish tanks.

As the wife couldn’t take a plane, we had to take a train. The best thing about living in Europe is the train network. It’s excellent. Apparently we could buy a ticket to Amsterdam via Brussels on the Eurostar for the same price as a Eurostar ticket to Brussels. Excellent. We got an apartment in Amsterdam (cheaper than a BnB for 4) and enjoyed ourselves tremendously.

We did a 4-hour stopover in Brussels before taking the Eurostar back to London, and that’s where all the drama happened. The wife lost vision in one eye while we were there. This cleared up after 7 or so minutes. But it was alarming enough for us to head immediately to the emergency department in St Pierre hospital, in Brussels. The wife’s brother (a doctor) reckoned that she had a Transient Ischemic Attack (TIA) and the doctors in Brussels were inclined to agree after performing tests after tests on her.

Long story short, we missed our train back to London and had to catch the early morning train the next day. We managed to get on the 9:37 train but there was a signal failure at a very important rail junction outside Brussels. All international traffic use that junction so there were no international trains getting into or leaving anywhere near France, Netherlands, Belgium and the UK. This was resolved and we were put on the earlier train (7:57) which bizarrely left at about 9:45 so all in all, we were only about 15 minutes late. 

On the advice of the doctors in Brussels, we went to the hospital in London to arrange for further tests, and after seeing the Neurologist, they concluded that it was unlikely to be a TIA but it’s best to get it verified by TIA specialists. 

A few days later the wife spent the whole day at Charing Cross hospital doing yet more tests. It turned out that the wife has a mini hole in her heart! Technically called a Patent Foramen Ovale (PFO), it opens when the heart is under increased stress (e.g. when she’s excited, stressed, etc). This can allow clots through and it’s likely that a small one went through and cut off blood supply to her eye, causing the loss of vision. So she DID have a TIA.

Apparently about 20% of people have them, and it’s, according to the cardiologist, “a mechanical defect”. In a vast majority of cases, it won’t bother anyone but as the wife is pregnant, just taken a long train ride and dealing with my condition, had just put a little too much stress on her heart and it allowed the clot to pass through.

This gets more complicated as she’s pregnant, and it’s likely that she will have another episode if she goes through childbirth the normal way. We’re not sure what the obstetrician will recommend, but it’s likely that he will recommend an elective C-section but he may say that it’s OK to go through normal childbirth, so we’ll just have to wait and see.

For now, I am taking it as a blessing in disguise. The TIA could very easily have been a serious stroke. In which case, we’ll still be in Brussels and Peanut will be in the neo-natal ICU. Or, we could still be oblivious to the wife’s condition and proceed with childbirth normally, and she could suffer a stroke. Either way, I’m glad we caught this in time. It could have been much much worse. 

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Busy busy busy

Apologies for the recent lack of postings. It’s been an eventful few days. More about that in later postings. I celebrated by birthday a few days ago. Birthdays to me have always been just another day but for the first time in many many years, it’s been quite special. Special cos despite what’s been happening, it feels good to be alive and relatively well. It also feels good knowing there’s an excellent chance to see many many more birthdays in the future. It’s also special cos of the baby and me thinking that the next few birthdays will be very different indeed.

Another reason for the lack of updates is that the wife gave me a new computer for my birthday. 🙂 So for the last few days I’ve been busy updating, transferring my data and setting up my new toy.

I’ve also started to go into work a day a week now, and working from home the other 2 days. It’s been very good, and I’ve enjoyed myself tremendously. Who would have thought getting on the tube in the morning would be enjoyable! 🙂 I hope to ramp that up to 2 days in and the other 2 days out eventually till the transplant. That should keep me sane for a few weeks. 🙂

In addition, the wife’s brother and his wife were here for a short visit. They didn’t need much looking after, as they went about their day tours and their shopping on their own. We also took a short hop down to ‘The Dam’ using the Eurostar via Brussels. An interesting and eventful trip that one.

We on the other hand, have been busy. I’ve had a new brace fitted for my broken hand, and have to go back every week or so for physiotherapy. We have also started birth preparation classes. The whole purpose of the class is to prepare parents-to-be for the labour and birth. It also puts parents-to-be in touch with each other so there’s a natural support and mums network.

We’ve also put in orders for almost everything Peanut will need when she is born; things like the cot, push chair, dresser, etc so it’s all systems go! I’ve got a power tool to help with the assembly (not going to tighten any screws with my broken hand for sure). All that’s left now are the small bits and bobs that we’ll get over the next few weeks. There’s also some cleaning to do before she gets here. 🙂 But no more windows. 

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