The following may be used to promote the bone marrow registry program world wide but must not be altered in any way shape or form. My name and email address must accompany my "diary."
My only hope is that this will draw more people into the registry and as a result of this hopefully save the lives of those who need a bone marrow transplant.
Brian E. Beattie
Not to be altered or reproduced in any shape or form without the written permission from the author,
I attended a bone marrow information session at the Ottawa General Hospital in Ottawa, Ontario Canada. The information session involved a brief overview of the bone marrow program, a question/answer period and a take home information booklet. Shortly afterwards I signed the permission form to get involved in the bone marrow program. At this point a small blood sample was taken from me. (December 1990)
I had my HLA typing done and the first four antigens A + B was recorded on the national registry (for me this happened at the Ottawa Red Cross). The process was painless - just a few small vials of blood were required, 10-15 minutes and I was out of there.
A request came into me that I was a possible match for a bone marrow harvest.
I was requested to come to the Ottawa Red Cross to have a DR test performed. Shortly afterwards I was notified that I was not a match but the results of my blood tests would be kept on the computer.
I was informed that I may be a possible match for another patient. I had honestly forgotten about the registry and to be called caught me off guard. I spoke with someone from the Red Cross who asked me if I could come in a week later to have a blood test performed (MLC).
I came into the Ottawa Red Cross to have a MLC test done. I was told that it would be three weeks to three months before I would hear a result on whether I was a match or not. I thought about it constantly and down deep I had a gut feeling that I would be a match but didn't get to excited in case I proved not to be a match.
I remember this one exactly. Three weeks to the day and 8:20 a.m. the bone marrow co-ordinator at the Ottawa Red Cross called me at work and asked if I was sitting down (by the way I was). They informed me that I was a match for "my patient". The next few moments were hard to describe, sort of a mixture between a real high to complete bewilderment. It was extremely hard for me to concentrate on work the remainder of that day as my mind was going 100 miles per hour wondering who the patient was, where do they live, what will my surgery be like, what is the patient feeling, all these questions.... I wanted to get things rolling right away so I called my wife at home to see if she could bring our three children to the baby sitter that same afternoon so we could meet with one of the doctors from the Ottawa Red Cross. Later that afternoon I along with my wife attended the meeting and they (Doctor and bone marrow co-ordinator) answered any questions we had. We also viewed a short promo film which included a small segment on the actual surgical procedure.
I went to my doctor and there had a complete pre-harvest workup which included - two chest x-rays, blood work, urine analysis, a complete physical and an ECG. The purpose of this physical is to ensure the donor can safely go through the surgery with a general anesthetic. The results of these tests were picked up the next day by the bone marrow co-ordinator of the Red Cross. At this point I felt like I was caught in a whirl wind as many things were starting to occur at the same time.
I went to the Red Cross again where they removed 15 vials of blood from me that would be sent to the hospital of where "my" patient resides. These samples would be tested further to ensure a match with that of the patient. At about the 11th vial I started to have this hot flash, it felt as if someone were holding a torch over my body. During the next few moments I had nurses throw cold compresses about my head and shoulders. Although I was very embarrassed it felt good to be cooled down. The nurses had everything in control and told me that this happens now and again and not to worry about it.
After my visit to the Red Cross I went to the Ottawa General Hospital for (yes you got it... more blood work) I was by now wishing I had a valve installed on the inner side of my arm. They also did a urine test. After a few moments of bouncing from nurse to nurse I met with one of the two surgeons that would be performing the harvest. I also met with the bone marrow co-ordinator from the Ottawa General Hospital at this time she answered any further questions that I had, they also hold me my date of when the surgery would be held. My surgery date would be 23 days from today!
I went to the Ottawa Red Cross and gave one unit of my blood that would be given back to me while I was in the recovery/day care unit on the day of my surgery. During this donation "my oil light came on again" this was now as previous embarrassing. I felt like crawling under the chair that by now they had me lying in.
From the date that I was informed that I was a positive match to the date of my surgery I can honestly say that I thought about the bone marrow program and "my" patient several dozen times a day. I wanted to tell everyone that I spoke with, matter of fact if you ask my work colloquies they would probably say that's all I spoke about. My friends and family also heard the same probably more as I was telling them all about the dreaded disease that now is starting to be tamed-Leukemia.
As a user of email and access to the Internet I had access to several newsreader groups from which I obtained a wealth of information. The most valuable information on the "net" came from a monitored news group called BMT-TALK, (Bone Marrow Talk). I sent out a query on the email asking if anyone was a donor or about to become a donor. This was really neat as within hours I had a response from a lady who lived here in the Ottawa-Carleton area and also was about to become a B.M.D. (Bone Marrow Donor). This was amazing as this news posting goes world wide and the chance of locating someone in my own city was neat ! We wrote to each other telling of our experiences as we went through the workup process, separate but together via e-mail.
Well here I am only 24 hours and I'll be the donor on the table. I am now starting to get nervous. About 5:30 p.m. I receive a call from the Ottawa General Hospital asking me to be at the hospital at 6:50 a.m. the next morning. I am not to eat or drink anything after midnight - I think I can handle this request. For a good part of the night I toss and turn then finally drifted off to sleep...
Well this is it. The result of what I am about to do may possibly save the life of someone who I do not know. My wife and I got up this morning at about 5:50 a.m. Now since I can't eat or drink anything because of my 8:00 a.m. surgery I shower and was all set to go at 6:15. My wife, God bless her, felt my nervous excitement and optioned not to eat breakfast.
We arrive at the hospital at 6:30 a.m.(twenty minutes early). We check in at the admissions office and then proceed to the day surgery unit where we wait in the near dark waiting room. After about 15 minutes of nervously flipping through magazines the nurse came out and asked me to come in and get changed into the hospital "greens". I was then assigned my bed, the Nurse who was assigned to prep me was simply wonderful. I was still nervous my wife and I said a short prayer together for me and for the patient who the following day would receive my bone marrow via intravenous (I.V.).
At about 7:45 a.m. the porter showed up to bring me to the operating room. On the way I spot the bone marrow co-ordinator from the Ottawa Red Cross who was himself waiting to get into the "greens" as he was going to be video taping my operation. This video would later be used to assist those who like myself were positive matches and would be going through the donation procedure.
7:50 a.m. and I'm laying on the stretcher outside the operating room waiting for the anesthetist to show. As I strain my neck to sneak a peak through the window of the operating room I see a beehive of activity, my stomach is now a ball of nerves. Finally after a few more minutes (which feels like hours) I am wheeled into the operating room. The room appears smaller than I envisioned it - actual size maybe 12x15 ? What I do notice first is the anesthetic machine and the tables and tables of surgical instruments. Within minutes of being wheeled into the room one of the nurses puts an I.V. line into my left hand - painless. Another is placing heart monitor pads on my chest and left side of my back, while she is doing that another is placing a blood oxygen clip on one of my fingers on my left hand. Talk about being wired for sound ! I now hear a beep-beep-beep from my heart monitor - If I didn't know any better I would say one of the nurses was playing Nintendo... The bone marrow co-ordinator from the Ottawa Red Cross calls out my name from across the room. He started video taping me as soon as I entered the operating room, this video for me is something that I will provide me lifetime of memories and the Red Cross a educational tool.
The nurses and surgeons are all there, I count 11 total. I'm starting to get very drowsy now and it is really hard to find the urge to drift off - but I am determined to give it my best shot (as can be seen in the video). The anesthetist gives me a small drink of very bitter antacid, YUCK ! The next few seconds are a blur but I hear the anesthetist telling me to breathe the oxygen and GO TO SLEEP! What happened next ? Lights out baby... that's it... I was outa there !!
The next thing I remember is I have an extremely sore throat and a mask of some sort on my face. Not knowing where I was I was babbling not understanding what I was saying but still speaking. I remember seeing the bone marrow co-ordinator briefly but then drifted off to sleep. I didn't know it but I was in the recovery room and the operation was over - successful but sore.
Wow, I can hardly wait to view the video.
I was in the operating room from 8:00 to 9:00 a.m., then wheeled into the recovery room from 9:00 to 10:00 a.m., then off to the day care unit where I started out earlier in the morning.
The time now is 10:00 and I am feeling much better, less groggy but a little sore in my lower back. I still have the I.V. in my left hand which is accepting my unit of blood that I had given at the Red Cross a week earlier. It took about three hours to transfuse me and while I am in my bed the bone marrow co-ordinator shows up with a goodie bag.
My wife at this point takes over the video camera as I am presented with some parting gifts from the Red Cross (I feel like a game show contestant). I am given a couple large Red Cross note pads, a coffee mug, a T-shirt and heavy duty sweat shirt with a really neat logo of a heart and two faces looking at each other each in differant colors.
I left the hospital at about 3 p.m. (the same day) and headed home. Once I got home I went to bed and slept until early evening, got up for about 1.5 hrs and then off to bed again where I slept until mid morning the next day. I got up (very slowly) and walked about realizing this was not as bad as I thought it was going to be.
Over the next several days I'd be lying if I said I didn't hurt. It was quite painful - BUT thank goodness for those little yellow pain pills. "Take a trip and never leave the house". Part of the pain was a stabbing pain that felt like an electric shock going down my right leg. This all pretty much disappeared after about the one week time frame - just some stiffness hung around (this I figured just to keep me humble).
One week later I am pretty much back too normal - I still have a feeling of stiffness in my hip joint area. I wonder who the patient is, where do they live and most of all I wonder how is he/she doing? You have to put this all in perspective and say what I am going through is nothing to what "my" patient must be going through. I am back to work eight days post operative and have only taken the extra time as I have an excellent employer.
I am back to work - I find that my energy level dwindles off during the mid afternoon but with each day post operative I find myself getting completely back to normal. Matter of fact I would if asked (the Red Cross removes my name from the active list for a period of one year) give bone marrow again without any hesitation at all.
I put this diary together and finally after 22 days post operative I feel completely normal. I've posted this on the Internet not for my glory but to encourage those of you who have not yet signed up on the national registry. Contact your local Red Cross for more information.
I just found out in a letter that I received from the parents of my bone marrow recipient that "my patient" is a 6 year old girl and doing well (at 100+ days post operative). This is the highlight of my year and I look forward to the day when I might get to meet her. At this time I have written a letter to "my patient's family" and "my patient". I hope all is well for her and her family ?
Today I contacted the Red Cross here in Ottawa for an update on the little girl and received very sad news. Apparently she relapsed back into active Cancer (two months ago). As per the contacts at the Red Cross she is undergoing more chemo sessions. They are unable to give me a current up to date status on the little girls condition.
This news was very hard for me to comprehend. My feelings are that of confusion, anger, followed by sadness and a sincere feeling to reach out to that family (wherever they might be) and help them in any way possible.
My prayer is that God will reach down with His loving arms and wrap this family in a protective layer of love and understanding.
Today I was contacted by the Red Cross and they told limited information. The little girl is at home in "stable" condition - no other information was provided. I wonder how she is doing, what part of North America she lives in and what plan of action her doctors are planning to take. (These and about 10,000 other questions).
One year post operative and I finally get my name placed on the active bone marrow registry. My patient is attending school and and apparently doing well considering she has relapsed. She is undergoing conventional methods of cancer treatment at this time.
Since this was my one year anniversary I gave the Red Cross permission to release my name and address to my patient as well as place my name back on the unrelated bone marrow registry "active list."
Received a call from the bone marrow co-ordinator in Ottawa saying that they had heard from the Vancouver, Canada co-ordination center. I was given the name and address of my patient. She is now seven years old and lives in Texas, U.S.A.
When I was given her name and address it all of a sudden hit me that this to me was no longer an anonymous little girl but someone's precious gem. I would love to meet this little person and her family some day. Maybe they would like to visit Canada's capital and enjoy the goodness that God has given us all. Maybe some day...
Today I received a wonderful letter - actually it was two in one. One was a hand written letter from "my patient", the other was from her Mom. The nicest part was a photo of her - what an angel !
I got up enough courage to call her home telephone. You know it's strange, for the past year I constantly thought about the moment when I could get in touch with her and her family and when the actual moment arrived I was scared. Did they want to hear from me ? Was I intruding upon them ? The phone rang once, twice then......
An answering machine - RATS ! ! !
So I left a short greeting along with my name and telephone number.
This happened on Saturday morning.
I did not hear back from the family and I have two days to decide on whether to make a trip to Texas for a visit or stay put here (with lots of SNOW-SNOW-SNOW and COLD-COLD-COLD). You see right now there is a big seat sale on the Airlines (Canadian Airlines and Americian Airlines) but I have to buy the tickets before January 19 to get in on the sale. I called the family at about 6:15 p.m. today and her Mom answered the phone. To say the least my tongue was tied and I hardly knew what to say. I spoke with her Mom and Dad and boy do they have a southern drawl - real neat!
Well today I arranged a flight for a family of five (Myself, my wife and our three young children) - what an adventure - what a holiday. Everyone in my family is looking forward to it - especially the children who have never been out of Canada must less out of our Province. The idea of being on a plane is something they have never experienced. We fly from Ottawa to Toronto then Toronto to Dallas on the 19th of February. We have friends in Plano, Texas and although we have not firmed up plans yet we already have friends there and our "new" friends. Part of the new family is now "Blood related" as she has my bone marrow. Neat eh ! The only thing that is hurting us about going to the U.S.A. is the value of the Canadian dollar - now only worth about .60 cents or in other words the U.S. dollar is worth $1.40 in Canada. Oh well - it will be worth it all regardless of cost.
Called to my bone marrow family in Dallas to let them know what day and time we would be flying down. What came next cannot be described as nothing less than tragic. The little girl age 7 passed away on February 1st. I felt the loss as if it were one of my own children. I spoke with her Mom and Dad and they still expressed an interest to meet us - the feeling was mutual. They will be meeting us at the airport and that I'm sure will be a difficult time for both families.
We arrived in Dallas after a long hard flight from Ottawa, Canada.
When we left it was near minus 30 - when we arrived in Dallas it was 95 degrees. We spent several special times together over those10 days. We also spent many days by ourselves and put over 1200 miles on the rental car we were using. It was really hot - it turned out that the day we arrived it was the start of a major heat wave. Each day was 98 degrees or hotter (the hottest got up to 103 degrees). The last day we stayed dropped to the normal low of near 32 degrees. What a change! The flight back home was very, very rough and long. A lot of people were sick because of the air turbulence. We flew Dallas to Toronto and Toronto to Ottawa. After arriving home at 11:00 p.m. Ottawa time
I noticed that we were missing one bag - the bag that held all our souvenirs and the kids special things that they picked up while at a rodeo. I called the American airline we flew and they said "oh that's too bad, I then guess it's gone". I then called the Canadian airline and they said they would do their best. Two hours later I got a call saying my bag turned up on another flight from Dallas into Toronto and that they would bring it out that same evening (in a driving snow storm). Talk about great customer service!
I've received several hundreds of emails and personal letters from kind folks from all over the world. my contact with the family has been once in the past two years. I would like to have more but if this were meant to be I again say that don't lift up Brian Beattie but this little girl's family in your daily thoughts and prayers.
I would like to thank those who helped me through this interesting procedure. The people at the Red Cross in Ottawa, Ontario Canada. The nurses, surgeons and staff at the Ottawa General Hospital. My wonderful wife and children and last but not least Jesus Christ to whom I and my family have given our lives to.
Sign up today ! You never know, you just may end helping save someone's life ! Would I do it again - you betcha, in an instant.
Not to be altered in any shape or form without the written permission from the author, Brian E. Beattie