Thursday, December 25, 2008

Double Cord Transplant Day

Last Thursday (Dec. 18, 2008) at 3 pm was the start of my double cord transplant. First, the Belgium cord was infused into my body. The bag of 0+ looking blood had all of the stem cells from the Belgium cord. The Belgium cord did not have a test sample for the City of Hope to recheck the tissue typing of the cord so 5 hours earlier, the cryogenically cord was defrosted in the City of Hope lab and a small sample of the stem cells were tested. The bag of stem cells was also washed to remove any impurities (I have no idea how they do this). The Belgium cord tested perfect for me so then the infusion started at 3 pm. The stem cells were gravity fed into me over 1/2 hour. After the Belgium cord was infuses, the Australian cord blood was hung and infused into me.

Now it is a waiting game. My body's marrow has been killed off by the chemo and radiation and my body is not making any blood (white, red cell or platelets). We now have to wait until the baby stem cells make marrow and start making blood. This can take 12 to 20 days for the stem cells to start producing. I am hoping they start working in 7 days. I will donor infusions of blood and platelets until my baby stem cells start producing. I am also getting tons of antibiotics since my white count is near zero (no immune system). A cold could be very bad for me.

We just wait now!





Belgium Cord blood bag. The Belgium cord is 0+ type blood. I am B+.















The cord blood going into me through my hickman catheter.


















The Australian cord blood bag (B+) was darker and not as large since this bag did not need to be washed. This bag was more like blood (thicker and darker).













The finished bag of Australian cord blood.















The finished bag of Australian cord blood













Belgium cord blood bag













Belgium cord bag


Saturday, December 20, 2008

Pictures





My father-in-law, Joe waiting to have me checked in for my Hickman surgery on December 3.



























December 3 - I am in the pre-op room waiting to be taken into surgery to have my Hickman installed. The Hickman is a catheter inserted into my chest and into the superior vena cava vein and is used for all intravenous connections.

















My beautiful wife, Elaine hanging out with me in my room. I am on the 6th (top) floor of the Helford City of Hope Hospital (Room 6115).


I have a great view to the west and can see downtown Los Angeles on clear days. I can also see colorful sunsets from my room.












My IV pole and me. This IV pole is connected to me 24/7 (except when I shower) through my hickman catheter in my chest.

Radiation Day

Wednesday was Radiation Day. They picked me up by wheelchair at 10 am and took me to the basement of the old hospital. The hospital has two linear accelerators that are used for total body irradiation (TBI). I was to get a single dose of 200 cGy (200 centigrays which is an amount of radiation absorbed into the body). The doctors told me that 200 cGy is not a lot of radiation but that this is the most that one would get at one sitting. Usually, patients receive 1500 cGy spread out over 150 cGy per session.

All I could say was the night before the radiation, I was having nightmares about Nagasaki and Hiroshima. I was thinking about the guy standing there and then the nuclear storm hits him, his eyes bulge out, his hair flies off his head, you see his skeleton and then it instantly turns into a pile of dust. Well enough of negative visualization. No World War II re-enactments.

For the radiation, I was to lay on first my right side for 20 minutes and then on my left side for 20 minutes. First they laid me down on the table and measured the distances of my head, throat, chest, stomach, knee and feet to the machine since they had calculated how far I must be to receive an even amount of radiation over my body. I was very surprised to see the technicians measuring me with a regular tape measure. Where are the laser measuring devices to make sure they are getting the correct distance. I am an engineer and I like precision measurements especially when it means possibly burning off my nose or ear. The technician informed me that exact measurements are not needed!

Next they taped small computer chips to several locations on my body (head, neck, chest, stomach, knee and foot) using standard masking tape. They said this was to measure the amount of radiation I would receive at each point and verify that I was getting an even dosage. I said that's cool that these chips are real-time and can tell you how much radiation I was getting as the machine was operating and they adjust the dosage strength as needed. The technician said that the measuring devices told them how much radiation I received after I was finished. So I guess if I happened to receive too much radiation on my knee, they just go "Oh well, I'll guess we'll try to do it better next time". I was not very happy with the archaic, 1950's looking technology that I was going to receive.

Finally, the technicians got me in the correct position on my right side and then they put at least 20 hospital blankets on top of me for protection. Using the masking tape, they taped a clear plexiglass sheet to the table covering my face to the machine. The plexiglass fell a few times before they put enough tape on it to hold it. Again, high tech operations.

The three technicians then ran out of the room and said that they can see me on the monitor in the next room and if I had any problems, to raise my hand. They put on some Santana music to help me relax. They bolted the door and then I said a prayer that I would survive this. A red light started blinking and the machine buzzed. I felt the hairs on my chest were moving or was it my skin burning off. I was not sure if I should have my eyes open since I was looking directly at the machine 6 ft away, so I kept my eyes shut and prayed and thought positive fun images I have experienced in my life. The Santana music playing helped since I knew it would be over in about 4 to 5 songs.

The technician counted down 15 minutes left, 10, 5 and 2 minutes left. Those last 2 minutes felt like 2 hours. My shoulder was hurting bad and I wanted to be able to move it. The buzzing finally stopped, the red light shut off, the door unlocked and the three technicians ran in to see if I was still alive. Luckily, I did not feel any different. They proceeded to move the monitoring devices taped to my hairy chest and stomach and gave me a nice waxing with the masking tape. I was turned over to my left side, the stack of hospital blankets was lowered on top of me. The three technicians ran out of the room like mice, locked the 6 inch thick steel and concrete door and the buzzing and red lights started up again. Santana was cranking in the background with some good bass (they must have a good speaker system). I did not feel anything this time (I guess I do not have any hair to buzz on my back) and just laid there and relaxed.

I thought 5 minutes had passed but the technician did not say anything. Then I for sure thought 10 minutes and then 15 minutes had passed but no word from the technician on the status of my stay. I knew it was raining very hard outside and we were in the basement. Maybe the basement had been flooded and everyone was evacuated or what if a group of heavily armed terrorists had overtaken the radiation department looking to steal some plutonium for their warhead. The radiation department was a ghost town but I was still laying here getting pumulted with radiation from this linear accelerator. It must be 20 minutes now! Why has no one told me how much time is left? Is there anyone out there? Am I all by myself? I started to scream help in my head. HELP! Would I be burned to a crisp, where is everyone? I thought about getting up and running for the door which was blocked from the radiation shower. Finally, the buzzing stopped, the red light shut off, the door unbolted and the three mice scurried in yelling, "You are all done!" I could not wait to get out of that room!

The only effect from the radiation was that my nose was very dry. I did not start heaving or feel sick to my stomach which my doctor told me was a possible side effect. Luckily for the rest of the day, I did not have any side effects. Thank God! I survived my radiation!

Tuesday, December 16, 2008

Well, I better get this blog going.

Three weeks ago, my doctor still did not have a matching marrow donor. There are over 11 million registered marrow donors in the world and I do not have anyone that matches at least 7 out of 10 alleles (tissue typing numbers), the minimum number needed to match to perform a marrow transplant to cure my non-Hodgkin's lymphoma.

But my doctor did have two baby cord units that she was looking at. One cord was from the Belgium cord bank and one was from the Australian cord bank. The cords have to be a minimum of 4 out of 6 alleles to me. The cords do not have to be 7 out of 10 like adult marrow since the baby stem cells are immature, more flexible and do not have as memory.

The tail of each cord was mailed to the City of Hope for confirmation testing. The following is a matching of my six numbers (A, B, DRB1 - two numbers for each) with the two cords:


Steve (my #'s) A (0301 / 3303) B (3801 / 5101) DRB1 (1201 / 1302)

Belgium Cord A (0301 /3303) B (5801 /5101) DRB1 (0101 /1302)

Australian Cord A (03xx / 33xx) B (58xx /51xx) DRB1 (1505 / 1302)

The Belgium Cord is one year old (born in 2007) and the Australian Cord is 10 years old (born in 1998). The Australian Cord has a Middle Eastern background.

Each cord was 4 of 6 to me and 5 of 6 to each other. Both frozen cords were mailed to the City of Hope Hospital with arrival of both cords completed on December 10, 2008.

On December 11, 2008, I was admitted to the City of Hope Hospital in Duarte, CA to start my Matched Unrelated Multiple Cord Blood Transplantation. To get the body ready to accept the new stem cells from the cords and not attack them, the regimen consists of one day of a very strong chemotherapy drug, Cytoxan; five days of a moderate chemotherapy drug, Fludarabine; two days of anti-rejection drugs (Cyclosporin and Mycophenolate Mofetil (MMF / Cellcept); and one single dose of 200 centiGrays (cGy) of total body irradiation (TBI).

As part of my regimen, I would receive a single dose of total body irradiation (TBI) to help lower my immune system and prepare my body for accepting the new baby stem cells. I had a radiation consultation to measure me for the event which would occur the following week on December 17th. They laid me next to the huge linear accelerator which would shoot electrons into my body and measured the distance of my body to the machine at several points (head, throat, chest, waist, knee and foot) and the thickness of my body in those areas that the electrons would have to enter. I hope they did they measurements correct. I do not want to lose an eye or a toe.

So far, I have been in the hospital for six days. Tomorrow, I receive the radiation and then Thursday I receive the double cord transplantation. I've been nauseous on and off due to the chemo and the hospital food quality.

That's it for now. I am going to rest a bit! Please pray that all goes well!