Transplant Journey

To Do or NOT to DO?

Day +28, but who is counting? No sign of the dreaded Graft versus Host disease. The creatanine levels are still high, it was at 122 today up from 118. I got an extra 2 litres of fluid.  Extra fluid will help to bring down this level. My consultant does not seem to be too worried about the level. My platelets seem to be coming down as well. From a high of 180 on Dec 31 it is at 112 today. Again, no one seems to be too concerned about this either. I was a little tired today as it was a long day in the hospital. Not a good idea to go late in the morning as you end up spending the whole day there. We did not leave until 3 p.m.

Dr. Conneally was very pleased with my ‘thank you’ letter to all the staff in the ward. She was particularly pleased that I had thanked all the staff, not just the nurses and the doctors. She mentioned that many of the cleaning and catering staff were with the hospital for over 10 years and that they worked very well together. It really doesn’t take much to be kind to patients, and I wonder why we can’t have this environment in every ward in every hospital. When you are sick, you are very vulnerable, whether it is cancer or any other ailment. The Denis Burkitt ward is a great example of the standard of care for a patient and what a tribute to a great man Dr. Denis Burkitt. A man of great faith. I will talk about him in my next post.

Today we (thousandseeds) had a launch event of the Lean Startup Meetup Group. We were able to convince Eric Ries from Lean Startup fame from the Silicon Valley, US, launch the group. This was a major coup, all organised by my business partner Mary. I did the administrative work from home. The event was a sell out – a big success with over 140 people at it and organised in less than 2 weeks. Eric Ries confirmed on Christmas Eve and we setup eventbrite in early January. I was out of hospital and able to help Mary set this up. I was sorry that I could not be there in person. Rohan was helping with the registration.

Rohan got a lift home with one of our friends, Kevin. Rohan was not happy that I went out to meet Kevin and shake his hand. Amazing how the children are so protective of their dad, watching me like a hawk and making sure that I am protected from any bugs. One of the rules in the house is that everyone must wash their hands when they come in from outside. They follow this routine so religiously.

Talk about religion, I used to ask; “Where did we go wrong with our children?” This refers to their faith. Now, I know for sure, that we have done a good job bringing up the children. They may not fall into the ‘Hail Mary’ brigade and they may be following a different drummer, but they are far from ‘lost’. To quote the final  sentence from the Mother Theresa poem: “in the final analysis, it is between you and God; It was never between you and them anyway!”

I’ve called this post, “To Do or NOT to Do”, this was my dilemma a few months ago. My consultant at St. Vincent’s said that I was in the chronic phase and my consultant at St. James’ had no doubt that I was in the accelerated phase. The only common ground was that both of them agreed that a bone marrow transplant was the best option IF I was in the accelerated phase.  I thought long and hard on whether I should look for a third opinion. But, the problem was that I wasn’t sure that a third opinion would help my decision. While, I did not want to go through with a bone marrow transplant, I felt that I could put my trust in Dr. Conneally’s care. It was a ‘gut feeling’ and I went with it. Once I decided on this course, I decided not to look back, but just to focus on getting through the process. Though I used to constantly question Dr. Conneally and I think I caught her off guard once when I asked her:“How many patients had she lost?”  You should have seen the look on both the doctor’s and Pat’s face as Dr. Connelly tried to give me an answer. I think she just dodged the question and I did not push her for an answer. We all knew that there was about 20-30% risk of failure. Another time, I asked for her Plan B, if Plan A failed. Her reply to this was that she was the A-Team! Great answer! Where am I going with this? I guess only to say that once you decide on the path, then move on. I have seen my brother Shammil say to Rohan on Facebook, Never look back Rohan, unless you intend going that way! Great quote!

That’s all for now folks!

2 replies on “To Do or NOT to DO?”

Hello Raomal,
Delighted to hear you are doing well and no panic around results, Alleluia Brother!
Such a lovely uplifting, lifegiving post 10th Jan. When I went to work for the Carlton Clinic one of the things I really admired was the attitude that all staff were treated equally and with respect from the top to the bottom. Doctors, Nurses, Reception, Admin and Cleaners all had their tea breaks and social outings together. Tea breaks were interesting where all manner of things were discussed life, sickness, kids, economy, sex, drugs and rockin roll and what was happening on the street. It was an interesting forum as there were opinions and stories from Council estates in Bray (scary at times) to the latest cancer drug. Now that I find myself a redundancy statistic and feeling hard done by I will remind myself of that Great quote; “Never look back unless you intend going that way! Back to the faith, your children may be following a different drummer but coming from a home where there is Love, respect, care and outreaching to family,friends and community don’t be surprised as your children’s goodness unfolds.
Love and Blessings
Marian & Pat


I think – “never look back unless you intend going that way!” has to be the quote of the century (so far) for me. Thank you for continuing to share your journey in such an inspiring way.
Looking forward to the relaxation of your “no fly zone” soon and being able to catch up in person one of these days.


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