Day 25 and 0.9

Well the heading pretty much says it all. It's day 25 since transplant, and my white cells are 0.9. Slowly but surely my counts are coming. We're all having little bets on when my neutrophils will appear. Dad says between Friday and Monday. I say between Tuesday and Friday next week. Katherine, the nurse consultant says between Monday and Wednesday. Ruchira, the doctor says Friday. Mel the nurse says Sunday. Mum says "later this week" so we'll assume she means Friday. I really don't care who's right, but lets hope one of us is. We now have to watch out for any rashes, especially on the palms of my hands or the soles of my feet. This could indicate Graft versus Host Disease (GvHD). A little bit is ok, a lot is bad. None will do me. My school teachers have heard that I'm feeling better, and they've all come in to see when I'm ready to start work again. My school at home has sent work for me, so I'll be able to hook into that. I've been trying to talk myself into eating something, but everything tastes like, well, um, I'm not sure what it tastes like, but it's not good, what ever it is. Poor Mum has had a sniffle, so she has exiled herself to the unit. Get well soon Mum. I'll wait here for you, ok?

A Good Day!

Day 24 post BMT. I have felt relatively well today. Poor Mum picked up a cold, and wasn't able to visit. Kristen and Aimee went home to Forbes with Jay. Dad had the Monday Midday Meeting with the doctors on his own. Good news today. My white cells are still 0.8, and my platelets were down again, BUT, today Dr Melissa told Dad that under the microscope, they could actually see neutrophils. Too few yet to count, but they are coming. I am also trying to eat again. There's nothing I can find that I like. Today I tried spaghetti on toast. Disgusting. I used to love it. Vegemite on toast used to be yummy. Couldn't even try it. I tried some plain old Doritos. At first they were a little bit off, but I had a second, and then a third, and a few more after that. I'll try again tomorrow. I'm off all pain medications, and my NG feeds are up at 65ml per hour. I really want to get out of this room, but the doctors have told me that my neutrophils have to be more than 0.5 for three consecutive days, before they can allow me out. Let's see what tomorrow brings.

What the blood results mean?

Blood is made up of lots of things. Firstly the red blood cells, which are also called erythrocytes, contain heamoglobin, which carries oxygen around the body. The oxygen is released in the tissues in exchange for carbon dioxide, which is transported to the lungs to be breathed out. Then there are the white cells, which are also called leukocytes. Their purpose is to fight infection and protect the body against foreign organisms, including bacteria, viruses, parasites and fungi. Types of white blood cells include neutrophils, lymphocytes and monocytes. Neutrophils are the white cells which gobble up bacteria. Then there are platelets. Platelets make your blood clot.

Every morning at 6.00 am, the nurses take samples of my blood to be tested for all these things. They do it early so the results are back in time for the doctors to discuss when they start their rounds, which is anytime from about 7.30am on wards.

So what should they all be? Well, for Heamoglobin, it's measured in grams per litre. For someone my age, this should be between about 113 and 165. This morning my haemaglobin was 92, but remember, I'm still having a blood trasnsfusion every couple of days. Now to the white cell count. These are measured in 10 to the power 9 per litre. That's a way of saying a really big number without having to write down all the zeros. It's something like a billion though. For me, they are supposed to be about 3.5 to 12.2. This morning mine were 0.8. These are what my new bone marrow is making, and this is what is really exciting. My neutophils are still zero, and they are also measured in the big billion type of numbers. I need these to be between 1.5 and 7.5. These will not start to come up until my white cell count is higher. Platelets are also measured in the millions, and mine this morning were only 30. they need to be somewhere between 150 and 450. My marrow hasn't started making these yet, and that's why I need them transfused every day.

Zero Point Eight

Sunday today, day 23. Today my white cell count is 0.8. They've taken me back to daily platelets rather than twice daily. My sore side is feeling a little better, and my temperatures are settling down nicely. I didn't have a temperature over night, and I'm sitting on a balmy 37 degrees right now. It will be interesting to hear what the doctors think when they have their weekly meeting with Mum and Dad tomorrow. Every Monday at noon, Mum and Dad have a 15 minute meeting with the entire oncology team. The head doctor, the fellows, the registrars, the head nurse, the clinical nurse consultants, the social worker, the dietician, and sometimes a student doctor. They all sit and talk about me 'cause I'm special.

Happy 21st to me!!!!

Today is my 21st. That is BMT plus 21. On tuesday my white cells were 0.4, on Wednesday they were 0.5, yesterday they were 0.6, and today, they were 0.6 again. I'm generally feeling a bit better, except for the key holes where they did my lung operation are really sore for some reason. They are so sore, that lifting my arm is a killer, and if you touch me there, I will probably punch you. Well I would if that didn't hurt too. The doctors have a theory that now that I'm producing white cells, they are targeting those sites, which may have some infection there, and the soreness is because they are getting better. Well I hope so anyway. I've been having a go with the Wii, which is frustrating as well as fun, but it makes me a little bit tired. The drugs are slowly being reduced, and yesterday I ate a little bit of lettuce. At first I thought it was ok, but later I thought it was disgusting. My taste buds have gone stupid, and they've forgotten what I like. I hope they start remembering soon, I don't want to have to like stuff I didn't like before. Yesterday was my first day since transplant where I went all day without a fever. That means I went 24 hours without spiking over 38 degrees. Hopefully I can keep going so that my isolation can finish, and my friends can come and visit me again.

Could it be????

Apart from feeling quite a lot better today, this morning I received the encouraging news that I had produced 0.4 white cells in my daily blood count. This could be what I've been waiting for. The side effects of the chemo are starting to disappear, the drugs are slowly being reduced, and I've been all day without spiking a temperature over 38 degrees. I am still having some abdominal pain from time to time, which is occassionally severe, and they've given me back the pain releif. It doesn't seem to work though. Before they give me the antibiotic called Vancomicin each day, they give me Phenergan first, and that really knocks me out. This afternoon, I got Dad to set up the Wii for me and I had a game of tennis, some bowling, and a hit of golf. I didn't get out of bed though. Everyone tells me I'm starting to look better, and the mucusitis is all but gone now, so maybe those little white cells are there working in the background, and we're just starting to see them showing up. I sure hope so. Come on little guys. Come on. The picture show my dog Jess watching over me with the pole with 11 different drugs and things running in.

Transplant Day Plus 17

Mum & Dad, the nurses, and the doctors all tell me I'm looking better. I am starting to feel better. I'm also now starting to heal a little. I just need my temperature spikes to go away. I seem to have at least one or two every day. A temperature spike for an oncology patient is anything 38 degrees or more. I've already had one trip to 39.7 degrees. Not nice. Today, Monday 23rd March, I actually got to get out of the isolation room for a short time, but it wasn't by choice. It was so they could do a CT scan on me again, just to make sure I haven't got an infection which is causing the temperatures. I've actually been able to sit up a little in the last two days and do some scrap booking, one of my favourite hobbies. I get to do it with one of my favourite people, the play therapist Cathy. Yesterday I made a birthday card for my friend Elly. Happy Birthday Elly. This is me with Cathy Quinn, the legendary play therapist at Westmead Kids.

Wishing for Whites

After you've had a Bone Marrow Transplant (BMT), you can expect blood recovery anytime from about day 14 onwards. It can take up to six weeks in some cases, and I sure hope I'm not one of those. Today is 23rd March which for me is day 17 post transplant, and whilst I don't feel very well, some things have slightly improved. The doctors tell us that this could be the very first signs of white cells starting to be produced. The problem for me is that with so many things to repair, they probably can't show up until a few of the repairs are completed. I don't feel quite as nauseas as I did a couple of days ago, and they are trying to wean me off some of the drugs My hands are so sore, because the skin is peeling off them. The mucusitis is not as severe as it was, and I can now actually speak without sounding like I'm gargling at the same time. I need platelets every day so I can stop bleeding, and I have red blood cells about every second or third day. Come on white cells. Come on!

Waiting

Today is Tuesday March 17th 2009. Today I received the last dose of any sort of chemo type drug with my last dose of Methotrexate. It's day 11 post transplant, and if anyone could feel sicker than I do right now, then they are really sick. All the yucky side effects have really kicked in. The mucusitis is really awful, and the nausea is very full on. My hands ache, my elbows are sore, my underarms hurt. My throat hurts, my stomach hurts, I'm so blown up with fluid I look like the Michelin Mans daughter. My mouth is full of ulcers, and my hair is all falling out again. Lucky I didn't have much to lose this time because I got Dad to trim it all off first. The doctors are telling me that any day now I should start to see some positive signs that the white cells are starting to come back. This will be the first indication that the new bone marrow is beginning to engraft. This cannot come fast enough for me. I'm having platelets nearly every day, and they've taken me up to the next level of antibiotics. I'm also being desensitized to Vancomicin, because the lab has grown a bug in my daily blood cultures, which is no doubt responsible for my high temperatures. I had Vancomicin before, but I had a nasty reaction to it, so they decided I must be allergic to it. Now they feel that they need to use it, so I have to become not allergic to it. I currently have about ten different things running into me at once. Naso feeds, TPN feeds, antibiotics, you name it, and when they hang the platelets up, it's eleven. I really hope the next time I post on this blog I'm feeling a whole lot better.

Feeling Yuck

Chemotherapy is designed to rid you of cancer, but in order to do that, it makes you really sick in the meantime. It's most likely due to what I call "alphabetosis", the side effect associated with every letter of the alphabet being used to spell the names of the chemicals and drugs they use on you. For example, in my first chemo, they gave me daunorubicin, etoposide and citarabine, and in my second chemo they gave me citarabine again and fludarabine. With my last chemo, I started nine days before the transplant. The three chemotherapy drugs used were Busulphan, Melphalan and Fludarabine. So I don't feel sick (ha ha) they give me dexamethazone, maxalon, lorazopam and ondansetron, whilst all the time infusing cyclosporin as an anti rejection drug and aciclovir as an anti viral. I have to have antibiotics all the time as well, so they give me ambersome, timentin, gentimicin, teicoplanin, and if necessary voraconizole and vancomicin. Most of these I'm having all the time, and on day one, three, six and eleven after transplant they give me methotrexate, another chemo, and then folinic acid to reverse it's side effects. Since the antiemetics (drugs to stop you feeling sick) they were giving me were making me feel sick, they stopped them (maxalon and lorazapam) and changed me onto chlropromazine, otherwise known as largactile. Since my appetite has deserted me, I'm having TPN (total perental nutrition) including lipids infused intravenously, as well as my nasogastric feeds at only 10 mls per hour. Whilst all this is going on I'm having supplementary potassium and magnesium, and in case it all gets too much, they give me a background 5 ml per hour morphine, which I can give myself more of if I need it. All these things have combined to make me feel awful. In fact, I'd be happy if I only felt awful, it's actually worse than that. There wont be much I can't spell when I get out of here, and even if I did spell any of these wrong, who's going to know?

Transplant

After counting down on Chemo for 9 days, we finally arrived at day zero, Friday 6th March. The day started with Aimee, the donor, being at Middleton day surgery at 7.45am. The trouble with being on an emergency theatre list is that you never know whether you'll be in early, or late. Aimee was finally called into surgery at 1.10 pm. Dad went with her, while Mum stayed here with me. I was still feeling sick. I am still on the antibiotics, and now I'm having an anti rejection drug called Cyclosporon. I have to have it 24/7 for while ever I'm in hospital, and by tablets when I get out. I have a sore ear, my back sometimes hurts, and I feel sick a lot of the time. After they harvested Aimee's bone marrow, they took it to the lab to "count the cells" and check it over, and they had it back here to me about 3.30pm. Aimee woke up from the anaesthetic about 2.50pm, and the nurses told Dad to come in. The infusion of the bone marrow, otherwise known as the transplant, started about 4.00pm. Aimee was still having her post op check over, but arrived by Dad powered wheelchair at 4.30pm. I had a nurse with me the whole time they were infusing. I'd been given some drugs to help me tolerate the infusion. I haven't been able to eat much for many weeks, and even my tube feeds have been stopped for the last few days because I just can't keep anything down. Now it's day plus 1, Saturday 7th March, and while I don't feel very well, the doctors are pleased with how it's all going. Aimee is pretty sore, but otherwise ok.

Last Chemo Before Transplant

My last chemo started on 25th February, counting down to 6th March. 6th March is the day scheduled for my bone marrow transplant. They call this the countdown with 25th February being day "minus 9" and tranplant day being day "zero". From then we start counting out. The chemo drugs they use in this lot are Fludarabine, which I've had before, Busulphan, which I haven't, and Malfalan, which I have not had before and is regarded as one of the "chuckiest" chemotherapies. Today is day "minus 3", Tuesday 3rd March. Let me tell you, Busulphan is pretty chuckie. The drugs they give to stop you feeling sick are antimetics, and the best one I've had is called Dexamethazone. However, they cannot give too much of that with this treatment, so they're trying to save it for the Malfalan days. I've only had Mum with me since last Tuesday, because poor old Dad had a sore throat on Wednesday morning, and exiled himself back to Forbes. A good thing he did, because before he even got home it had developed into a cold. I've been moved out of my big end room, and into a smaller one on my own, nearly back to where I started in November. My next move will be into isolation, on Friday, for my transplant. It's getting pretty tough now, and I've got a brand new rash today. It could be from the chemo, or it could be from the plateletes, or it just could be because. I will be really glad when this chemo is all over.