My LHS Story – Susan Striffolino

It seems that every time I talk to someone, I am getting the news there is a new person going through some sort of cancer treatment. I have donated money to different causes, ran races to support different charities, but always wondered how much actually went to research or patient assistance. I found away to make a direct difference…here is my story.

In 2008, I “got on the list” at a Music Festival. At the time, I didn’t know anyone that had ever donated stem cells or bone marrow. Four years went by, I forgot I was even registered. I got a call that I was a potential match and would I still be interested in donating….sure. All I had to do was go get some typing blood work done…sure. I had the blood work done and waited a couple of weeks. The next call was that the patient’s team of Doctors would like to proceed, was I still interested…sure. Next was a conference call to cover the procedure and answer any questions I may have. I was told I would be donating stem cells, which is very similar to donating platelets, you are hooked up to machine that takes blood out of one arm, runs it through a machine that extracts the stem cells and puts the blood back in the other arm. All of my expenses would be covered, they would fly me to where the donation would be done for a complete physical, and then as long as they didn’t find anything out of the ordinary, the donation would be scheduled for about 2 weeks after that….sure.

I flew down to my physical, had yet more blood taken, I wasn’t sure if there was going to be any left for the patient. Spoke with the Doctors, got to talk to a few people who were going through the pre-treatment regimen. When donating stem cells you have to be on 5 day treatment prior to the donation to boost your production. Each day you get a quick shot, if you are not local to your donation site, they can arrange a visiting nurse to do this at your home or work. I was told that it might make you feel fatigued and achy. In talking with the others going through it, most agreed that they felt like they had just done too much and felt better after taking some aspirin.

As I was flying home from the physical, alone on the plane contemplating what I was about to do, I was overwhelmed with something that the Doctor had said to me. My donation was an international one, I was the one person in the entire world that could save this patients life, not even his family were matches. All of a sudden this was real to me. Over the 2 weeks between the physical and the donation they begin killing off his system with chemotherapy. He will start completely over with my cells. I will be a part of him, he will have some of my DNA, like my daughter, we will be family.

My Alarm Story

Sometimes even the best laid plans go bad. I am still in the confidentiality part of the donation, so I cannot get specific, but due to circumstances beyond our control, we ran into a problem. The day before I was to start my pre-donation injections, I was told that they would not be able to get them to me; a nurse would not be able to come and give them to me. I needed to be at my donation center the next day. After many frantic calls, about twenty different logistical options, it was decided we would drive to the donation site. They had already started his chemotherapy to get rid of the bad cells, there was no postponing, we had to do this one way or another. So, off we went on a 4 hour ride, and each morning I got my 5 minute shot and then would spend the rest of the day wandering around the area I was staying in, my daughter and husband stayed two days and then went back home, leaving me alone in a hotel room. Having a two year old, there are many days, I long for a quiet day to do things on my own schedule, but I missed my family tremendously. I kept my eyes on the prize, a few days of inconvenience for us, meant that someone was getting a second chance at life. The shots really weren’t bad at all, they made me feel a little achy and unfocused but nothing that would have stopped me from my normal day had I been home.

My husband rejoined me on Sunday night for the Monday donation; they ask that you have someone travel with you. Got up early Monday and had some breakfast, it was finally starting to seem real to me. I had some last minute blood work done (again) and I was hooked up to a saline IV to pump up my blood volume, then we were off to the procedure room. The nurses were awesome. I’m not going to lie, the needles are big, but they know what they are doing and it was only slightly uncomfortable. Once you are hooked up, it is hard to move around, the arm the blood is coming out of is immobilized, and you have wires running everywhere. Four hours later, I was done, they had given me something to relax me, so I was a little disconnected when I first got up, but otherwise didn’t feel too bad. Grabbed something to eat, and to the airport for the trip home. I took the next day off from work because I wasn’t sure how I would feel, I could have gone in. My arms were a little bruised and I was a little weak, but was fine in a day or so, within 2 weeks I was back to running. My donation center called periodically to check on me.

So, I waited patiently for some news, every once in a while I would inquire and they didn’t have any information, but no news is good news. About 7 months after the donation I received an email that they had a letter from my patient, I was ecstatic, and like a little kid, I ran to my mailbox every day until it came. We are still anonymous and there is all kinds of criteria about what you can send, no personal or location information can be exchanged and the letters are reviewed by people on both ends before they get to us.

I received a beautiful, simple Thank You card – wishing me a life of health and happiness, I keep this card out where I can see it every day. I was so happy to hear he was doing well, I went out and looked for the perfect card to send back, spent a lot of time writing everything I wanted to tell him and also letting him know that I would do it again in a heartbeat (little did I know…) and dropped it in the mail. That very same day I got a message from my donor center that they would like me to do a donation of “T” cells for the same patient. My heart sank; I was scared he wasn’t doing well, my husband reminded me that even if it didn’t work, I still gave him the gift of extra time with his family. I quickly agreed to the additional donation, had yet more blood work done. They told me that a T cell donation is done the same way that a stem cell donation is done and that it wouldn’t take as long. You also don’t have to do all the pre-donation shots.

They also told me that my patient is in remission…WOOHOO!!!! He needs the T cells as a boost. This is a wonderful thing, it worked!

Turns out, they were requesting a large donation and my vein was not feeling very cooperative, I was hooked up for 6 hours. I feel that the second “easier” donation was harder than the first. For both donations, it was made clear to me that my nurses and doctors were there for me and were closely monitoring my health, that they would not do anything to put me in any jeopardy. They cut both donations slightly short so that my levels wouldn’t drop too low. All in all it was still not a bad experience and compared to what he had gone through, not that big of a deal. I had a lot of bruising on my arm, and was a little tired but went back to work the next day. I was running within the week.

I look forward to a time when we may be able to get to know each other and possibly meet.

My Alarm Story

I met Mike and Jules recently after a Big Country show and asked Mike to sign the thank You card that had been sent to me. They asked me to share my story and this is it. I saved a life. Mike said at the concert that they had matched about 650 people; my donor center said that I was one of the first 1000 that they had matched. It is not enough…Get on the list – you never know, you might be able to say you saved a life someday.

I did.