Jaden's Journey:

Caregiver: Rare Cancers

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 4 years ago, Male, Age: 6

  1. 1
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Surgery

    Procedure or Surgery

    When My 28 months old son was initially diagnosed with Rhabdomyosacroma in his facial/throat we as his parents was very devastated. Our dream was crushed, our comfortable lives has torn apart. Our routine has changed to something unfamiliar. This is every parents worse nightmare. As soon as Jaden was hospitalized, there was tons of surgeries and procedures scheduled for him. We were hospitalized for 10 days not knowing what to except. Each day he had to do a procedure. On the second day of his admission, he went through three surgical procedures, including tumor biopsy, central line insertion for chemo, and bone marrow biopsy follow by CT scan, bone scan and MRI while he was still sedated. Poor little Jaden went through so much. He also got spinal tap, lymp node biopsy in OR in separate occasions. Everyday there was so many procedures and blood works. He was so traumatized and scared. Since that admission, he has been having nightmare every night. And that's not the end of the torture yet, Jaden also a G tube placement for future feeding because he is not going to be able to eat due to the mouth sore cause by radiation.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. 2
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Jaden gets chemo every Wednesday in clinic, every month he has to be hospitalized for three types of chemo and not to mention side effect from chemo therapy. So far he hasn't require blood transfusion yet, but he is getting neupogen shot every night for 7 days after his chemo. He doesn't have much nausea or vomiting but he already got admitted to the hospital for high fever. We were there for six days because the fever won't break. The nose culture result came back a viral infection. That's why I am very protected of him. I don't bring him to the public anymore. I don't allow friends or their kids visit us. But if they do, they can't be sick and they have to wear mask and make sure they wash hands. Every visit to the hospital has not been easy. I cry when he cry, I am happy when I see him smile. Every procedure is terrified .

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  3. 3
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    External radiation

    Radiation

    Jaden already on his day seven radiation, he must finish 28 days of radiation, M-F. And he needs to be sedated with Versed and Propofol because he needs to stay still. He cries with every radiation because he is frighten. We were told by our Doctors that he will have mouth sore and some gum bleeding and nose bleed from radiation. And of course chemo also lower his blood count, that makes him more prone to bleeding. He already starts having these symptoms. So we are already supplementing him with G tube feeding. He has been losing hair and weight. His energy level is one third of what he was before he was sick. He lives on I pad and TV.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  4. 4
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Diagnosed

    Oh No

    No, this can't happen to him. No, no no, please let me take his place. He is just a baby, his life has just began. This is the time he learns and grows. how can't this happen to him? Did I do something wrong? I think I must have been punished by god for something I did. No, this is just a dream. Only those who has been through this kind of life changing experience understand what I am going through with my emotion. Words can't even express how I feel.

    0 Comments
  5. 5
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Clinical Trial

    This person has yet to add any details about this experience.

    0 Comments
  6. 6
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    Low red count, low white count, nausea, diarrhea, hair lost, gum bleed, nose bleed, mouth sore, thick mucus. These are all current side effect. Long term side effect from radiation is decrease bone grow from his jaw. So he will have asymmetrical facial growth. He will have hearing lost on his left ear. His adult teeth will not grow and severe cavity. He might not be able to open his mouth wide due to the damage to his jaw muscle. He will have dry mouth because his salivary gland will slow down production. He will have cataract on both eyes. He is going to need a lot of surgeries in the future. Not mention other type of cancer might recur in the future due to exposure to high level of radiation.

    0 Comments
  7. 7
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Celebration

    Nothing yet so far, it's going to be a year before we can celebrate. I don't even know if I want to celebrate because you never know if cancer will come back or spread in the future. Cancer is like a time bomb.

    0 Comments
  8. 8
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  9. 9
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    My mind/Sense of Humor

    Loss

    I am more forgetful now, I can't focus and concentrate. I misplace stuffs. I can't keep on top of everything. I lost my smile and sense of humor. I don't have faith. I lose hope. I am scared all the times. I lost confidence in my self. Some time I don't feel like talking to anyone. I am so afraid that I might lose my son although he is already been in treatment. I got upset easily when I am stress.

    0 Comments
  10. 10
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    I need to take time off for a year.

    Decision Point

    We are on PFL and not thinking about going back to work until my son finish his treatment. So we will lost our incomes. Thank god we don't have expansive house, we are very low maintained. We will be tight, but we get by.

    0 Comments
  11. 11
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Take a long leave from work, losing income.

    Decision Point

    There was nothing more important than my son life when it comes to taking time off. No matter how difficult this journey might be, we just want to be there for him. Money comes and go, but my son health can't be replace.

    0 Comments
  12. 12
    • Jaden
    • Experience with Rare Cancers
    about 4 years ago
    Jaden's Avatar

    Other Care

    This person has yet to add any details about this experience.

    0 Comments