It's been about 5 months since my stem cell donation, and there hasn't been a day that the process and the patient don't cross my mind.
The stem cell donation process is one that takes quite a bit of preparation, even after being identified as a match. In addition to multiple tests for weeks leading up to the collection of the cells, I was given daily injections of a growth hormone called Filgrastim for 5 days. What this drug does is it allows for the bone marrow and stem cells to multiply at an amazing rate, resulting in more cells for the transplant. I was warned about the potential side-effects, but I honestly wasn't prepared for it! When people ask me to describe the pain, I would compare it to waking up with very sore bones, and with each passing hour the pain increased until ultimately, I was barely able to walk. The pain in my hips, lower back and femurs was the worst because this is where the highest concentration of bone marrow is found. The pain is caused by the growing of excess stem cells, crammed inside of your bones; so it feels like they are expanding from the inside out! I am small, and the amount of filgrastim that I was given was the lowest dosage, but still the appropriate amount for someone weighing 30 lbs more than me. I'm aware that not everyone has such severe side-effects, so please don't let this scare you. Besides, I would do it again in a heartbeat! (Maybe next time with the help of some pain killers, though!)
The date of the stem cell transplant was an exciting one because so much time and energy was leading up to this moment. I was given the opportunity to write a letter to the patient, without sharing too much personal or identifying information about myself. It felt like writing to a special pen pal, and feeling that we had this unbelievable bond to each other without even knowing his name or even having ever met. Each country has their own rules about disclosing certain information about the donor and recipient, and because he is in Europe, I will have to wait about another year before knowing if the patient would like to connect with me. I certainly hope so!
The machine used to collect the stem cells from my blood is similar to a diaysis, in that it takes blood from one arm, passes it through the machine to extract the stem cells and brings back the remaining blood into my body through the other arm. The entire collection process took about 7.5 hours. It took longer than expected because the PBSC (Peripheral Blood Stem Cell) machine could only run at a slow speed, because of my size. If it ran any quicker, it would cause my body to go into shock. The nurses were so sweet and explained the entire process to me, which calmed my nerves, especially when I started to feel like my whole body was tingling and going numb. The reason this happens is that the body looses calcium during this process, so as a sign, your lips start to tingle, then nose and then everything feels like its vibrating. It got to the point where I thought I might vibrate off the table! I remember telling my husband, Jonathan, to feel my head because I even felt like the hair on my head was vibrating! SO VERY WEIRD!
If you want to read more about the mechanics of the actual transplant,
I found this link to have a lot of information: http://pbsc-transplant.cancertreatment.net/
Driving home from donating my stem cells was comparable to finishing a marathon; I was exhausted and exhilarated at the same time! The recovery was very quick after donating, since the excess stem cells had been removed from my bloodstream, I immediately felt relief and found I was completely recovered 5 days after the donation.
I was told by the amazing staff of Be The Match in City of Hope that I would have an update from the patient 6 months after the transplant. I thought to myself, "Wow, it'll be right around my birthday. I hope my gift this year is good news."
Well, my birthday present came early and IS fantastic news! The young, 26 year old patient which had been battling Leukemia for many years, is back at home and doing well! HURRAY!!! I love happy endings, and hopefully for this young man, this is just a happy beginning!
I still can't eloquently put into words the amount of joy, strength, compassion, and love this whole process has allowed for me to experience. A process, which required to give so little time and energy, saved a life. BOOM! Think about it? I sincerely hope my story has encouraged you to add your name to the registry, and to step up to the plate if you are called to donate to someone that ONLY you could save. A modern day super hero, and we all have that super power!
If you have questions about the process, please feel free to contact me or leave a comment below.
In 2010 I was asked to join a group of 46 other singers to perform a new song called "La Gota De La Vida" to benefit Be The Match & City of Hope. The campaign consisted of the song and music video “La Gota De La Vida,” a red carpet event and a live performance in 2011 at the Nokia Theater in Los Angeles, CA. It was similar to "We Are The World" , where famous Latino singers and celebrities like Gloria Estefan, Enrique Iglesias, Sofia Vergara and Placido Domingo participated to help bring awareness to Be The Match. The organization builds and maintains an International registry of potential bone marrow and stem cell donors. Adding names to this registry is important, because these donations are vital to help save the lives of those diagnosed with leukemia, lymphoma, sickle cell anemia and many other diseases and finding a match is not easy.
As a performer advocating the cause, I was compelled to sign up and register myself as a donor. Doing so is extremely easy and only requires getting a swab of saliva. That's it! I felt huge support when my family quickly followed suit and also added their names to the registry. We joined the international community of 9 million members, 6.3 million of those are here in the United States.
I added my name to the registry with every intention of following through if I was ever matched. Still, knowing how rare that can be, I was shocked and humbled when I received the call a few years later.
In the of Summer of 2013, I was contacted as a potential match for a patient with Leukemia, but they required further testing to confirm. I was extremely excited that I could be able to help someone, but I was actually a little nervous too - I had read that surgery might be involved! I showed up with my now husband, Jonathan Miller, to the City Of Hope facility in Los Angeles, CA to learn more about the process what this news really meant. Jon took the opportunity to add himself to the registry too.
I was informed that matching someone is much more complicated than a simple blood type match. Although that is an important factor, Be The Match tests for Human leukocyte antigen (HLA) a protein found on the surface of most cells in your body. There are thousands of different possible combinations of HLA tissue types, making it difficult to find an exact match. A single match can require going through millions of records. At times a family member or sibling may be the best match, while often times a perfect match is found from a complete stranger! About 70% of patients in need of a transplant do not have a matching donor in their family, which is why having a resource like Be The Match is so important. The best matches are usually found in people with a similar racial or ethnic background.
A few weeks passed, and I was notified that I indeed was the match for the patient in need! The patient, a 26 year old male in Europe with Leukemia, would first need to go through other treatments, and as a last resort, need me as a transplant donor. Occasionally, donors and recipients are allowed to have more details about each other, usually after a successful transplant. I only know his age and location, which is interesting, considering that I have ancestors from this same European country a few generations ago.
This whole experience has been a very moving one for Jon and myself. So much so, that he decided that he was going to support the Be The Match cause as a professional race car driver in the sports car world, by promoting it in all of his press releases, wearing the logo and sporting it on his racecar!
November of 2014, as Jon and I were coming back from our wedding, I began loading my email, and the first one I see is from Be The Match! My heart stopped and my stomach jumped. So many thoughts ran through my head. Had the time come for the transplant? How had the patient reacted in treatment? All I knew was, I needed to be there for him.
I was told the patient needs a peripheral blood stem cell (PBSC) transplant. PBSC is one of two methods of collecting blood-forming cells for bone marrow transplants. The same blood-forming cells that are found in bone marrow are also found in the circulating (peripheral) blood.
PBSC donation is a nonsurgical procedure, called apheresis. The donation takes place at an experienced blood center or outpatient hospital facility that participates in PBSC collections for Be The Match, in my case it will happen at City of Hope in California. Apheresis takes a few hours and involves my blood being drawn, passed through a machine that removes the leukocytes and then back into my body. I can regenerate more, healthy leukocytes but the ones that I donate don’t have a long shelf life. They are flown directly to Europe and transplanted to the recipient. The other method is a surgical procedure that involves harvesting my marrow from a bone in my hip. It’s more invasive and painful, but if that is what’s needed in the future, that’s what I’m prepared to do.
I don't know the patient’s name, or what city he lives in, but this December/January, through Peripheral blood stem cell transplant (PBSC)I will not only be sending someone my stem cells all the way to Europe, I will also be sending all the hope, strength and love I can offer.
I strongly urge you to sign up and join the Be The Match Registry. You may be that one out of nine millionth person to be the match and help save a life.
For more information go tohttp://www.bethematch.org/