Author: Raomal Perera

Day +13, St. Stephen’s Day.  Met with Professor Paul Browne today. He is the head of the department. Both Paul Browne and my consultant Eibhlin Conneally trained in the US having spent over 5 years in transplant centres there. Paul is a very nice man, and from Foxrock Park (a neighbour) and went to Hollypark primary school. His sister, Edel, is a teacher at Loreto College, Foxrock, where I am on the board of management. Surprise, surprise, they have all heard of Pat, who is known as the ‘sun flower lady’ in the school.

The doctors are very happy with the progress as they closely monitor the neutrophil count and are pleased to see it start to pick up. The goal is to get to 0.5. My wcc is at 0.5, neutrophils at 0.2 and even the platelets which hit a low of 10 is now up at 42. The HB is low and I’ll get a top up of blood today. The blood counts going up is a major bridge to cross. The next major bridge to cross is to overcome the Graft-versus-host disease. They will closely monitor this during the next few months and deal with it.

I was loosing too much hair and they decided to shave my head. I have the new ‘Yul Brynner’ look. I have sure the children will have a good laugh as the smart comments have started on Facebook. I thought I’ll get more sympathy and play the martyr today as I am now looking like a cancer patient. As they say, always expect the unexpected from youth. Though more often than not, they get the balance right.

I generally go for the 10 a.m. mass over the internet (webcam). Today, after mass I watched cricket. The second test match between Sri Lanka and South Africa was on and I was watching Sky Sports on my iPAD. The Sky Go application for the iPAD is amazing. You can watch any of the SKY channels you subscribe to at home for free on the move. Happy to say that we (SL) did not have a bad day at the office today!

That’s all for now folks!

Day +12, it is Christmas Day! Wish you all the peace and joy of Christmas. I had great news today. The white cell count is now up at 0.4 and better still the neutrophil count is now at 0.1 (this is the key count) for the first time in days. My mouth is much better, which means that the healing process has began. The donor  stem cells have started taking over and the engraftment has started. What a great Christmas present! I am in good form today even though it was a very disturbed night.

Lunch is roast turkey and ham followed by Christmas pudding.  A few days ago they asked me if Pat would also like to join me for dinner today. Isn’t that a nice touch? I am looking forward to seeing Pat and the children later on this afternoon. I hear Rohan has a cold, so I guess I’ll see him on Skype instead.

I wasn’t able to drink much yesterday and as a result the Creatinine levels in my blood went up. They had to put me on a saline drip for about 8 hours. Creatinine is filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise. They tested the blood at midnight and found the level back to normal only to find that my potassium level was high. This was because of the drug Cylosporin. A potassium level that is too high or too low can be serious. I don’t think it was too high (5.6 instead of 5), but they were not taking any chances. At 4 a.m. in the morning, I was woken up to do an ECG! The doctor concluded that there was nothing to worry about and I was able to get back to sleep again until 6 a.m.

I’ll dedicate my blog post today to my four lovely children, Lesley-Ann, Amal, Rohan & Shereen. They have been a great source of support and strength during the last three weeks. The last 6 months were tough on Pat, and several of her friends had commented that she looked ‘worse for wear’ as the stress was beginning to show. These last few weeks, Pat has been looking much better and relaxed. The ‘glow’ has returned. I think this was primarily due to having all four children at home with us.

This prayer is from our school (Loreto College, Foxrock) prayer book and it is my way of thanking God for my four lovely children.

“Give to us God the courage to enter into this moment in time, into this gathering of our family in crisis, into this time of Grace. Let us not blame anyone for this but thank God for the very special times we’ve had together.

Give to us God the courage to enter into the possibilities that lie before us.

Give to us God the courage to enter into your presence, the courage to be carried along by your power reaching out to bless us. Amen”

Happy Christmas! Love Dad

Day +11, Christmas eve. Had a good night’s sleep for a change. The pillow case is covered with hair, as I am loosing my hair.  This is another side effect of the chemotherapy. There is some good news today. My white cell count is going up. It is at 0.2. The donor cells have started its work. Thank you Mahesh! The mouth is sore, but will have to put up with this for a few more days. Today, I will take my pain killers early. They might attached a morphine pump if it gets too painful during the day. The idea is to pump small amounts of morphine to control the pain throughout the day. Martha was my care nurse again last night, this has helped to brighten up my day. Isn’t it amazing the effect the first person you meet in the morning can have on your entire day? The nursing staff here are excellent. Have you seen the movie, Patch Adams with Robin Williams? It was an excellent movie based on a true story. Patch’s views on the nursing staff in a hospital are accurate.

I was going to write about the alternative treatments today, but have changed my mind to talk about the First 100 Days.

Whenever there is a regime change we tend to monitor the first 100 days. For example, the first 100 days in office , for a new President. In the INSEAD MBA course, one of the most popular modules, is the first 100 days simulation game. It is a game that acts out the first 100 days of a company takeover (acquisition). The winning team is the one, best able to deal with the crisis and find a way for a smooth transition from the old guard to the new guard. I’ve had the opportunity of being an actor in this game on several occasions and it has been fun. The game is over for me and I am in the ‘real world’, a player in a regime change during the first 100 days.

The regime change is when the donor stem cells will take over my blood production. The production factory is in my bone marrow and hopefully the factory equipment is still all in working order. The blanket bombing raid (chemotherapy) has killed off most of the factory workers (old stem cells). The old regime lost its way, producing quantities of defective cells instead of good quality cells. A regime change is taking place and the new donor cells will start the production. However, this transition is never smooth. The next potential hurdle is a disease called Graft-versus-host disease.

Graft-versus-host disease (GVHD) is a common complication after a stem cell transplant from another person. Immune cells (white blood cells) in the donated stem cells (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells. Your organs, seen as ‘foreign’ by the new regime may come under fire and your kidneys and liver may be affected. This is the reverse of what happens when you get an organ transplant. In the case of a new organ, it is your system that detects this foreign objet and looks to reject it. In my case, the foreign cells take over my body and wants to reject my own healthy organs, as they see these as foreign. I am on a daily dose of Clorosporin that is meant to be the mediator to prevent this, though you do want the donor cells to detect as ‘foreign’ the old regime’s leukaemia cells and destroy them. Therefore it is a balance and this is what the medical team will monitor during the first 100 days.

During this period, I will avoid contact with children to help prevent picking up any of the childhood diseases such as Chicken Pox as most of this immunity may have been wiped out as well. Anyone having any contact with winter flus and other sicknesses should also avoid coming to see me.

That’s all for now folks! Tomorrow is Christmas. Isn’t it exciting. Hope you have a great day with your families and we will talk again soon.

Day +10, I am at the half way mark. Three weeks in hospital, another 3 weeks to go. The mouth is very sore today. The donor cells haven’t started to build my immunity. This will take another week. I have just taken a local anesthetic mouthwash so that I can eat breakfast. Had a reasonable nights sleep but it will be a short update today.

Martha was back as my care nurse last night. She was my first care nurse three weeks ago and was very helpful in making me feel at home in hospital.  Martha is my ‘Florence Nightingale’. There is a team of 45 nurses looking after us on a 24×7 basis. Martha was followed by Mary the last time, though I hope that Mary doesn’t turn up again, as Lazarus wasn’t risen from the dead the second time:-)

When you are in pain, you tend to focus all your energies on trying to fght it. This is what I did for most of the day. Though, I remember once talking to someone about how to embrace pain, instead of fighting it. Must look into this. I made a mistake by not taking pain killers this morning. I would have been in better shape if I did what the nurse suggested this morning.

This year we did not get around to sending Christmas cards to our friends so let me take this opportunity to say; “May the spirit of Christmas bring you peace, The gladness of Christmas give you hope, The warmth of Christmas grant you love”. What is Christmas?  It is tenderness for the past, courage for the present, hope for the future.  It is my wish that your cup may overflow with blessings rich and eternal, and that every path may lead to peace. Happy Christmas!

That’s all for today folks!