lydiabaki's Journey with Lymphocyte-rich

Survivor: Hodgkin Disease > Classic Hodgkin Disease > Lymphocyte-rich

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 18 years ago, Female, Age: 26, Stage III

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    I was seven years old and started to have extreme back and leg pain. Within one weeks period of time I had fifth disease, strep throat, and a high fever. I lost my appetite and was losing weight progressively. I wouldn't be able to sleep because of the pain in my back and legs and due to severe night sweats. I went to my primary doctor for the Strep and Fifth Disease and than again for the back and leg pain. They sent me home each time with medicine and said the back and leg pain was growing pains. Two days later my mom took me back, knowing something was seriously wrong. I saw a new doctor and he had told us to go immediately to Kosair for a Chest X-Ray and a CT Scan. Being only 7 and never being in a hospital before I was frightened. After the scans however I was even more frightened and nervous. I saw my mom standing outside talking to the Radiologist crying. I wasn't sure exactly what was going on but I knew that it wasn't good news. Once we went home my mom tried to explain to me that they found a tumor wrapped around my spinal cord from my bottom almost to the top of my spine (near my brain). The first step she said was to get a biopsy done to find out if it was cancerous. I took the news harsh and very confused. I still wasn't really sure what a tumor or cancer even was.

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  2. 2
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I had my very first biopsy as an inpatient at Kosair's Children Hospital. I was scared with 100 different emotions running through my mind. The results came back within a few days and my Oncologist called my mom and told her the bad news, I did have cancer. This all took place in July of 1998.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    over 4 years ago
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    Longer Chemo or Radiation

    Decision Point

    My doctor sat and talked with my family and I about what we needed to do next after I was diagnosed. He had discussed with us that I may need Chemo and Radiation or just a longer term of Chemo. This was a tough decision for us to make. I remember my mom asking advice from several doctors and parents. She was scared. She ended up asking one of my doctors, 'If this was your child, what would you do?" He said, "No, radiation." The reason he told us this is because of my young age the radiation would have an effect on my growth sense I would be getting direct radiation to my spinal cord. So, we took his advice and stuck with Chemo.

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  4. 4
    over 4 years ago
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    Hair loss (alopecia)

    Side Effects

    Losing my hair was the hardest thing about the chemo. I remember the first long day of chemo I knew I was going to lose my hair. That same night my mom had thought she could help with the reaction I may have and put a hair net on my hair when I slept so that I wouldn't wake up with my hair all over my pillow. Instead, it made the situation worse. I woke up and the hair net was all tangled up in the little hair that I still had on my head. The same night of my first chemo treatment I lost most of my hair. It was a hard time for me.

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  5. 5
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I started my Chemo treatments in November and would have 1 long day of treatments and one short day of treatments every other week. I was nervous the first time but every time after that it only got better and better. I ended up actually looking forward to seeing my nurse and doctor friends and I always looked forward to having a grilled cheese from the deli in the chemo office building after my treatments with my mom. I was lucky that I had my mom to go with me every time. I would get sick on my long days but I was given some medicine to help.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The chemotherapy given through my line (in the office) and the drugs I took by mouth at home made me sick and tired. I was only 7 and wasn't able to do what all my friends were doing. I wasn't able to stay in school long without feeling tired, weak, or sick. I started to home school because of the side effects.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  7. 7
    over 4 years ago
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    Misdiagnosed

    Oh No

    After they had told my mom that I did have cancer (July 1998) they started doing more procedures on me. I had more X-Rays, Scans, Blood Work, and a Bone Marrow Aspiration done. I was taking Prednizone at home for the shrinkage of my tumor. They decided to go ahead and do my major surgery to remove the biggest portion of the tumor that was wrapping around my spinal cord to eliminate some of the pain. They still however were trying to figure out what type of cancer I had. I was diagnosed with Histeisitosis in September but a few weeks later they realized they misdiagnosed me. The medicines they were giving me were not doing the job. They sent my biopsy samples to several different children's hospitals to get some assistance. I was finally diagnosed with Hodgkins Lymphoma Stage 3 towards the end of October and was able to finally start treatments.

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  8. 8
    over 4 years ago
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    My mom was diagnosed with Breast Cancer Nov. 2011

    Oh No

    Here is where a WHOLE new journey began. The roles switched. I was and still am my mom's rock. I haven't missed one chemo treatment or surgery. I am her caregiver and I give her the strength and hope that she gave me 14 years ago. She has had two of my nurses when I had cancer. They are beyond wonderful nurses and we were lucky to have them again. God sent his angels. She should be finished with treatments in 2 months. Scans show that she is cancer free as of now (: We both have pretty amazing stories. Thank God for giving us the strength to pull through.

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  9. 9
    over 4 years ago
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    Long-term catheter

    Procedure or Surgery

    Once I was diagnosed correctly with Hodgkins Lymphoma I had another operation. They gave me a line (a catheter) which was placed in my upper chest. This was to be used instead of getting poked and stuck so many times. I had my blood drawn, medicines, and Chemotherapy given through my line. I knew that my line was going to be in me for at least a year so I decided to name each one of them. I was told that I would have a home nurse come to my home to flush my lines and change the bandage weekly. I wasn't so sure about all of this that was happening so fast, but I knew that my mom was by my side and she always managed to have me stay strong and believe.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  10. 10
    over 4 years ago
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    Cancer is shrinking

    Celebration

    I would have tons of follow-up scans to make sure that the chemo was working. I started to feel like Kosair was my second home. I didn't mind going to the hospital anymore. I would still get nervous before any procedures and would turn to my mom and ask "Mommy, is this going to hurt." and she ALWAYS would answer as honestly as she could. With the support I had through this journey I got through it.

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  11. 11
    over 4 years ago
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    Finished treatment

    Celebration

    I finished treatment and was able to get my line out (: I was looking forward to being able to do things that my friends could do and being able to say I AM CANCER FREE!!! I could get my hair back and be normal. I was so thrilled! I had the BEST support system. My mom was my rock and my doctors, nurses, therapists, and child life specialist were all amazing and played a huge role in who I am today. Thank you guys! I am proud to be a cancer survivor. I would LOVE to help others, if anyone has any questions or just wants someone to talk to, feel free to ask me. (:

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