Archive for August, 2011
I woke up this week thinking about numbers. Specifically statistics. I’ve been thinking about numbers since I met the transplant consultant, who told me that looking at the numbers as a whole, there’s a 25% mortality rate for a stem cell transplant. He was also quick to point out that this number included older people, and people with underlying health problems. While there’s no accurate or reliable data specifically for the people in my age group, he reckons that we do significantly better (another consultant said that the procedure had a 2 – 5% mortality rate for people in my age group). It’s a small chance, but a chance none the less.
When I was first diagnosed, we spoke to some of the nurses in the ward about chemotherapy and transplants and what nots, and they said that Hammersmith Hospital (aka Funhouse) has a very good treatment and transplant centre. They have a very high success rate and have a very low incidence of GvHD and other complications. They DO happen, but the rates are much lower than they are at any other hospital in the UK.
Having been in and out of the hospital for the better part of the year, they are very good at what they do. So I am quite fortunate and very blessed to be able to get treatment in the hospital.
Still, the numbers are numbers and any competent person will be able to say that numbers are only part of the equation, and the patient plays a huge role in the outcome of the treatment. As a doctor told me when I was first admitted, medically, they do what they can. But in almost every instance, the patient’s will and spirit plays a huge role in the outcome.
That’s what I’m going on, the will and spirit to get past this blasted thing and beat it into submission.
It’s quite surreal that Sophie’s been home for nearly 3 weeks now. We’re slowly getting to know her and her cries, just as she’s getting used to us and our inadequacies. We are also getting to grips with all the little bits and bobs that we have to do for her, like changing and bathing her. Not an easy task, and something the nurse in the hospital had to teach us when we were there.
I remember how nervous I was when I was bathing Sophie for the first time. The wife didn’t even want to do it! She was so scared.
Washing her har was fun. I thought at the time that I needed earplugs! She was screaming non stop!
Glad that’s out of the way, but not for Sophie. She took the time to catch her breath before the next assault on our ears! She was adamant that everyone in to room knew that she wasn’t liking her bath!
Wrapping her in a warm towel seemed to calm her down a little. You can see from her face that she’s not too happy with things at the moment.
She seemed a lot calmer when we used the bath, maybe because it reminded her of the warm waters in the uterus.
All done now. Well, with the water anyway. We still had to rub some oil on her skin. She didn’t like that much either. And put a nappy on her. She also didn’t like that. And dress her. Massive struggle there.
Still screaming after all that. Daddy’s ears are ringing from her screams but all’s good. 🙂
All clean, changed and comfy. Sophie stopped crying. Finally. 🙂
It’s 5 days till I have to report in to the Funhouse to start the conditioning treatment for my transplant. To say that I have mixed feelings is an understatement. Now I look forward to sleepless nights, a screaming baby, nappy changing, late night feeds and fumbles, more nappy changing, more formula making and baby poo.
At the Funhouse, it will be beeps, whooshes, yet more meds, more poison, more radiation, bloods and crappy food. Honestly I pick baby poo and sleepless nights any day of the week.
On the one hand I understand how important it is to go through with the transplant and how essential it is to get well. But on the other hand I abhor the fact that I have to be away from the wife and Sophie for at least 4 weeks. Not to mention the stress and worry that they will be under when I am undergoing the treatment.
Also not looking forward to the boredom and the fact that I have to be confined to the room for most of the treatment. I’ll be having treatments most of the day every day leading up to day zero. Depending on my bloods, they may let me go to the scrubs or to the restaurant or shops during that time. After the infusion, I will probably need to be in the room for most of the time. I can’t even head out to pantry to get a cup of coffee!
I am ‘stocking up’ on all the games, movies, tv shows and entertainment of any sort that I can get my cyber hands on to prepare for the 4 weeks of insane boredom in the hospital. The wife reckons that I should watch at least one comedy show a day (laughter being the best medicine and all that) so I’ve obtained the entire Black Adder series. That should last me a while. 🙂
Whatever it is, I just have one goal in mind. Getting out and getting better. Even then it’s going to be back for regular follow ups, but at least it will be the end of chemotherapy. And the follow ups will end. Eventually. So after that it’s all about spending quality time with my little family. And that’s something to look forward to. 🙂
We think Sophie’s been going through a growth spurt. Why? Cos she’s been feeding voraciously every hour! So much so that the wife can’t keep up. She’s literally been sucked dry. I’ve read that the first growth spurt starts at about 2 weeks, and can last up to 7 days! The wife’s all but given up after day 2.
Since the wife’s breastfeeding, she’s struggling to keep up with Sophie’s demands. Plus it’s exhausting having to feed a screaming baby every hour or so. We used to think that we could express some milk and store it for use if Sophie needed it. But try doing that AND feed a hungry baby in the same day. Doesn’t quite work.
It’s not just the eating that’s throwing us off. Babies going through growth spurts tend to be less settled as well. They want to be picked up, cuddled, tend to be more colicky and generally cry a lot. That sort of describes Sophie over the last few days. Normally she’s pretty good with settling herself to sleep so we generally swaddle her, and plop her into her cot or moses basket and she drifts off to sleep herself. Now we cuddle her and try our darnest to get her to sleep. We also find ourselves running to her room when the crying starts, and generally try to figure out what’s wrong. If she’s hungry, or if she needs winding, or if she did a massive poop ( cos she’s eating too much). All while trying to console a crying baby.
Hopefully this phase won’t last long. If this is what a growth spurt is like, I can’t imagine the fridge raids when she’s a teenager.
It’s strange but ever since we’ve had the baby, I’ve never felt more normal. It’s like I’ve never had Leukemia. We’ve been so busy with the baby that I’ve forgotten all about having to go in on 1 Sept for the transplant. Good and bad I suppose, as it takes my mind off the procedure but it also means that I will be gutted to leave them for 4 – 6 weeks. Thinking about it just makes me really sad. But if it has to be done, it has to be done. It’s only for 4 – 6 weeks, and I will be back with them again.
To make things worse, it’s not possible for Sophie and the wife to come to the hospital regularly to see me. Sophie cos she’s too young, and without a proper immune system, will catch all sorts of bugs in the hospital. The wife cos she has to look after the baby; although she will have more time when Sophie is older, and my mum gets here.
It’s going to be rough; the consultant already said that it’s nothing like chemotherapy or the treatments I had before. He said I would feel terrible for a few days. But health and age does play a role so he’s confident that while it’s going to be rough, it won’t be anything I won’t be able to handle.
Well no matter how rough it gets or how difficult it will be, the important thing is that after all that, I will be well and I will be looking forward to spending a good many years with my little family. 🙂 And for that I’ll gladly suffer anything many many times.
TBI or Total Body Irradiation. As the name suggests, it’s exposing the entire body to radiation. This will, as the transplant consultant put it, kill off any Leukemia cells that are hiding in all the weird and wonderful places in my body. Unfortunately it’s also a fairly intense procedure and will be pretty rough for the patient. But together with intensive chemotherapy and a stem cell transplant, offers the best chance of a cure.
Apparently the dose I will be getting is considered ‘moderate’ in the spectrum of radiotherapy, but high in the world of treating Leukemia. The mega doses are usually given for aggressive tumors. The procedure is split into 8 ‘fractions’, given over 4 days. This typically happens first thing in the morning (around 8:30am) and late in the afternoon (4:30pm). If all goes well and I am admitted on 1 Sept, TBI starts on 4th Sept.
I have mixed feelings about radiotherapy. On one hand it’s necessary to ensure that the disease doesn’t return, but on the other hand, well, it’s radiation. The invisible thing that was so feared when the nuclear powerplant was damaged in the quake and tsunami. It’s something I’ve never experienced before so I am not sure how to react to it. We’ve had X-Rays (radiation) and got sunburnt (also radiation) but we’re also taught that radiation is bad. So placing myself willingly in front of a gamma radiation emitter in the Mega Watt range probably isn’t the most intelligent thing to do.
The consultant who saw me the other day spoke about the side effects of radiotherapy; some of which we already know. Hair loss, sickness, weakness, tiredness, sore mouth, basically similar side effects that you’ll get with chemotherapy only. However the effects of radiotherapy can also be felt up to 12 weeks after treatment. In this case, patients CAN get symptoms similar to a chest infection (shortness of breath, coughing) but is simply a delayed reaction of one of the cell types in the lungs. Easily treatable but patients (and doctors) need to be aware of it.
Radiation can also affect the thyroids. This causes sluggishness, tiredness and unexplained weight gain. Also easily treatable with a pill. Maybe I can use it as a way of gaining weight! 😀
Anyway, it’s going to be in for the transplant in less than 2 weeks. Hopefully it will be the end of chemotherapy treatments and what nots after that. Then I can get on with the rest of my life.
To the bloke from Taiwan whose stem cells I am getting, I don’t know who you are or what possessed you to get on the registry, but a big THANK YOU!
Your selfless act has given me a 2nd chance in life to spend with my little girl and my wife. 🙂 If everyone is as selfless as you in getting on the registry, Leukemia will not be the feared disease that it is today.
Speaking of which, I would like to encourage everyone to get on the stem cell registry in the country you’re in. Or if you can’t get your friends and relatives to do it. Getting on the registry is easy. You fill in a form and give a sample; nothing more complicated than a mouth swab for some DNA. The DNA is analysed and broken down at a superficial level and entered into the database. Depending on the country you’re in, this database is accessible worldwide.
When someone needs stem cells, the relevant people will conduct a search on the database and if you’re a match, they’ll request a blood sample. This is where they will be able to tell if you’re a full match to the recipient or not. But getting on the database if the first step. I’ve heard that there are many many independent and national databases worldwide, but they’re mainly in Western countries. Hence they carry the stem cell data for mainly white people. There’s a severe shortage of stem cell data for other ethnicities (Chinese, Indian, African, etc).
There should be several registries in the country you’re living in. Check with your local Leukemia or Lymphoma centre and they will be able to point you in the right direction. Or Google it.
Getting on it doesn’t cost anything, and if you’re a match, you can save someone’s life.