a. How does it feel to be the parent of your child?
-It breaks my heart everyday to see the pain that my child goes through. To see my sweet, carefree little girl's whole life change because of this disease is tough. Everyday I just hope that the chemotherapy works. My life has become unpredictable because I never know what kind of reaction Kalie will have to the chemo. One day she will be fine but then others she will be throwing up and having bone aches. I have become my daughters biggest cheerleader and I continue to keep her life as normal as I can.
b. How is your child developmentally the same or different from other children at the various ages?
-Kalie develops the same as every child but now that she is in chemotherapy, she has lost her hair. I have also been told that chemo can sometimes stunt the growth of a child. Since Kalie has not hit puberty yet this is a concern of mine. She is also more likely to get sick because the chemo has destroyed her immune system. While she is on chemo, she is obviously not in school, but I try to do what I can for her education.
c. What professionals/agencies do you deal with? What services are available to you and your child?
- I have recently moved to Tennessee so that Kalie could be at St.Jude hospital. Whatever is not covered by my insurance does not come out of my pocket. Since this hospital is a research facility, there are always new methods coming out that could be tried on Kalie if I wanted. All the doctors that have treated her are really nice and want a cure as much as I do.
d. How did you find out about the above services?
-The doctor that first discovered that Kalie had cancer recommended us. Since this hospital is mostly recommendation only, I thought it was the smart idea to go if chosen.
e. What financial burden, if any, are you experiencing?
-Chemotherapy is very expensive often costing around 150,000. For a lot of patients, the first round of chemo doesn't work. Bone marrow transplants are around 250,000. I do not have the best health insurance so I am in debt to help pay for my daughters treatment. I have received some support from the city and my parents, but it never seems like enough. That's whats great about St.Jude though. They pay whatever my health insurance doesn't. That is why when I got recommended I took the opportunity.
f. What other information do you want to share?
-It is tough watching my daughter miss out on her childhood, but I am hoping that this chemo makes the cancer go into remission. If she is in remission for 3 years then they will officially call her cured because the rate of a relapse at that point is close to 0%.
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