Gregs Story

GREGS “ SPEECH” “I cont belive that the staff are working so hard look after sick people from next door and thank you for look after me so well and my chremend* was good. Shona and Ash do all the work and thank you for everything. I hope you wacthing sports on T.V. Thank you to all day staff and night staff for the help and thank Mom and Dad to come here everyday to see your son. Thank you very much.”

Love from Gregory Steyn.

GREG STEYN “Come on Greg. You can do better than that!” “Swim faster! Youre still in training mode!” “Youre getting old now. 31 years old already. Maybe its time to retire from swimming”.“But I am tired !”

This is what Gregs been hearing from everyone around him.

After the SA Elite Games in Durban, we brought Greg home for the holidays. Hed swum in eight races over the three days, and, for the first time in years, got no medals at all. I thought that his lack of energy and loss of appetite was because of him being tired from all the training, and watched him carefully over the next few days. A nagging feeling made me decided to take him to see a doctor before taking him back to Sunfield. He couldnt find anything specifically wrong but decided to do a blood test “just in case”.

“Mrs. Steyn. This is Dr. Jonck speaking. Id like you to come to my rooms to see me as soon as possible. I have some bad news for you.” The results of the blood tests came..

Acute Lymphoblastic Leukemia.

Theres no need to explain the crippling emotions that followed. The first thing one needs to do is to “know the enemy”, so I immediately went onto the Internet to find out as much as possible. However, its really hard to focus only on the positive things while wading through all the negatives, so I decided to give it up and hang on to the most positive thing of all: “…..survival rate of 80%“.We were going to fight this battle together as a family.

The first and most unpleasant test was the bone marrow biopsy, which would determine the genetic details of the “abnormal” cells. This involved giving him a sedative, followed by a series of small injections on the hip to anaesthetise the area between the spine and the hip joint. Then came the “drill” which was as thick as a pencil. This was pressed down hard and twisted around from side to side until it had sawed through the hip bone and into the marrow. Out came a large syringe and about 10 cm of marrow was then sucked up into the tube. Whilst this was most unpleasant to witness (Steve saw it, not me!), it didnt appear to be too painful, other than some dull pain and discomfort the following day. Greg bore this like a true soldier.

“Greg, you have some very bad germs in your blood and thats why youve been so tired. The doctor will have to use very strong medicine to kill those germs. So strong that it might even make you feel very sick for a while before it makes you feel better. So strong that it might even make your hair fall out.”

“We would have to look at your diet as well. No more Coke, sweets or junk food”. (Mom) “No more meat or dairy products. Lots of fresh fruit and vegetables. Take this Nutrimune twice a day. Itll boost your immune system”. (Brother Trevor, organic chemist). “No wheat products”. (Greg has a gluten intolerance). So whats left?

The next day we visited the Haematologist who was going to handle Gregs treatment. I had so many questions to ask him but he seemed determined not to tell me too much, too soon. He told us to go home and hed phone to confirm Gregs admission date the following week. This gave us a few days at home together to prepare ourselves mentally and physically for the months to come. One of the most difficult things Ive ever had to do is control my emotions and not let Greg know how I was feeling. To act normal, when theres a huge brick lodged in my chest causing panic, fear and utter helplessness.

Chemotherapy I had visions of a large, cold ward filled with several whirring, buzzing machines, Robin Cook style! Bald headed, grim faced people sitting silently, attached to the machines by several tubes, while others are slowly inserted into a large, dark, gruesome tunnel.

Nothing like that. Greg was admitted to hospital and placed in a private ward. The following day he underwent a general anaesthetic to insert a Cook Catheter into his subclavian vein, just below the collar bone. This serves as a port through which all the chemo drugs will be administered for the next few months. No need to poke holes into him day after day!

The chemo drugs are administered in differing doses and combinations. I prepared him for the side effects of nausea, diarrhoea and loss of appetite. Thankfully, he seemed to suffer very few of these effects. The chemo drugs are designed to destroy the cancer cells, but they also destroy all the healthy cells like the white cells in the blood. With this low white cell count Greg was highly prone to infection.

This leads to anaemia, infections and bleeding. Gregs white cell count was 55 when he was diagnosed (normal is 4 - 11), and 74 by the time he was admitted to hospital ten days later. After his 7th day of chemo, the white cell count had dropped to 1.5. This meant that he was highly prone to infection, with no means of fighting back. For this reason he was put into isolation - limited visitors wearing masks, and sterilising hands. Hed also been given 2 units of blood.

As part of his treatment plan, the haematologist performed a lumbar puncture to inject chemo drugs directly into the spinal cavity around the cord. I was dreading this procedure, but Greg seemed to be prepared. Afterwards Greg had a smile on his face and told me he “felt nothing!” What a guy !!

After that Greg battled with a fungal infection in his blood, received medicine for it while following a strictly controlled diet all the time and eventually completed the chemo treatment. He then enjoyed 6 weeks at home, feeling absolutely fine with not even a winter sniffle.

Another bone marrow then followed and this revealed that there had been a marked drop in the cancer cells and that Greg was in “partial remission”. One more 5-day session of chemo would follow, and then the doc would look into the possibility of a bone marrow transplant. This would depend on whether or not Trevor was a perfect match as a donor.

The next round of chemo involved higher dosages and thus caused more of the unpleasant side effects. The most distressing of these was that Greg couldnt face his food !! Hed wait in anticipation for the meal to arrive and then take one look at it and turn away in tears! After the chemo ended his appetite returned. Blood levels started to drop as expected and we only went home after a 3 week stay in hospital, with the prospect of yet another bone marrow biopsy and further chemo if necessary.

“Mrs Steyn? This is Dr. Jogessars rooms. Unfortunately Greg is not in remission yet. Please can you bring him back to hospital on Monday. The treatment will be over the next 6 months. Six cycles of 3 weeks in hospital and one week home. Quite a few of our patients have to go on to this next stage and most of them are “fine” afterwards”.

What if hes still not in remission after that?” “Then well try something else until we feel theres nothing more we can do”……..

EPITAPH

Greg passed away on 7 November 2007 after suffering from serious side effects of the higher doses of chemo. Steve and I were priveleged to be at his side as he was taken from us in total peace.

His girlfriend, Kim, who has been with Greg for 14 years, spoke to me on the phone yesterday. She said she had a message. “Last night Greg came to me on my bed. He was all white and had angels wings on his back. He says he is with Jesus and he is fine. Dont worry”.

Barbara Higgins wrote Greg was coping so well with the treatment and we were all so positive that he would recover. He was also always so positive and uncomplaining about the treatment. An illness so bravely born.

Estelle has been absolutely amazing throughout his illness. She can be truly proud of her son who lived life to the full and it is thanks to her that Greg had every opportunity to lead an interesting and meaningful life. Greg will always hold a special place in our memories.

Estelles email address is: estelle@futurenet.co.za.