Hope in Every Cell: My Stem Cell Transplant Story
Yike Huang's (right) journey to treat her AML began when she was 17 years old. Here she is with her mom (left) and dad (center).
I was diagnosed with acute myeloid leukemia (AML) when I was 17 years old. My AML is a high-risk, refractory cancer that has a high risk of relapsing, or coming back. Early in my treatment, doctors recommended a stem cell transplant.
My family, friends, and I had many questions. I went to the internet searching for answers. I wanted to know what the tests would be like. I hoped to see what the survival rates were.
Loved ones were afraid I was going to die.
Looking back, I am proud of how I went through my treatments. I made some mistakes, but I learned a lot about myself.
Getting a stem cell transplant can be a lonely, scary experience. By sharing my story, I hope to help others feel more prepared and less alone.
Each person’s experience is a little different. It is important for you to talk with your care team about any questions you have. Tell your friends and family what you need, when you need it. Lean on the support systems that are all around you.
It is important to be prepared, but there is no need to be afraid.
Conditioning
Conditioning is the first step of a stem cell transplant. Doctors use high doses of chemotherapy to get rid of unhealthy cells. This makes space for the new, healthy stem cells. The process also weakens the immune system so that it does not attack new stem cells when they are added.
The chemo was much stronger than the chemo I had received earlier in my treatment. I had heard that this chemo is scary because it is so strong. For me, it was not easy, but it was not scary.
It is important to be relaxed during this treatment. You might have nausea and vomiting, or mucositis. It is not comfortable. But, after you go through that, you are already winning the first part.
"Do not keep all of your feelings in your heart. Accept yourself, especially that you are having all of these feelings. Find ways to express them. Maybe you can write about them. I called one of my friends and talked with him. He listened carefully and gave me some advice."
The stem cell transplant
During the stem cell transplant, healthy stem cells are put into the body to replace damaged or diseased cells, helping it make new, healthy blood cells. It is an uneventful procedure. It is just like a normal blood transfusion.
I think the transplant is the most exciting part. When I saw the bag of stem cells and the blood that went into my body, it was like a dream.
I had an allogeneic stem cell transplant, which means that my stem cells were from a donor. I was grateful to have a donor who was willing to give me a second chance at life. I was moved to tears.
I recommend bringing something to do before you get into the room for the transplant because you might need to be there for 20–30 days. I brought drawing materials, painting materials, books, and crafts.
I made some friendship bracelets, watched TV, and listened to music. It is important to keep busy if you can. If you just lie in bed, it is hard to get through it. If you keep yourself occupied, the time will pass faster.
Engraftment
Engraftment is the last step. During this time, new cells start to grow. Your team will monitor your absolute neutrophil count (ANC). This is a measure of the amount of a certain type of white blood cells in your blood. After the count has stayed at 500 for 3 days, the engraftment is considered successful.
Some of my friends think that the chemotherapy is harder than the recovery process. Some think that the recovery process is harder than the chemotherapy. It is important to remember that everyone is different.
Yike Huang (center) encourages patients to lean on friends and loved ones throughout their stem cell transplant, as she does with her mom (left) and dad (right).
Self-care
At the beginning of your diagnosis, you must accept that your life has suddenly changed. This can be a hard thing for everyone to do, including parents , caregivers, and friends.
In the beginning, I searched the internet a lot, and there were many frightening things. Do not search too much on the internet for information about your diagnosis. Trust your care team. If you want to know more about your diagnosis, ask them.
Do not search for survival rates because they vary widely. You can have an approximate survival rate, but do not randomly search for how long you might live.
Do not keep all of your feelings in your heart. Accept yourself, especially that you are having all of these feelings. Find ways to express them. Maybe you can write about them. I called one of my friends and talked with him. He listened carefully and gave me some advice.
Caring for a loved one
Some of my friends and family members were very concerned about me. But their way of showing their concerns made me feel pressured. We need to remember that it is understandable for them to act like this because they are also sad or shocked. They are going through a hard time, too.
Friends and loved ones should understand that patients are going through a lot physically, mentally, and emotionally. The patient may not want to talk about their diagnosis. Some parents choose to tell their children everything. Some choose to tell their children very little. Whatever you do, consider carefully how to talk to your child about cancer.
Please do not be pessimistic when you come and visit us. Some of my friends were acting like I was going to die the next day. This creates a tremendous amount of pressure.
I know everyone is sad when they hear someone has cancer or another serious illness. But I think it is better to stay calm. If you come and visit the patient, do not be too sad or act like it is a huge tragedy.
Finally, it is a huge help to let the patient know you are always with them, always by their side, and always supporting them. This can give the patient strength.
