Archive - September 5, 2017

Harsher Realities

Harsher Realities

Tuesday April 22nd, 2008   Insurance

Today is the second day of taking the liquid multi-vitamin, Kayla seems much calmer, while having more energy. Probably sounds like a weird description but I do not know how else it could be described. Over the past weeks Kayla’s energy level has definitely improved. I attribute this to all of the supplements that she is taking and the Omega 3,6,9 oils.

One of the parents called me today, in a complete tizzy that her two-year-old daughter, is battling brain tumors and the insurance company is refusing to pay for procedures and trying to demand that she switch hospitals. It is so disgusting that these companies can do this to their clients, especially when they are battling something so debilitating as cancer, they are disgusting! I have heard of these kinds of things over the years but never really paid attention to them. Now I regret not trying to do something about it. There is a major situation in America with Healthcare and Insurance!

Her doctors figured out how to get her daughter treated by admitting her into the hospital and giving her the needed shots in house. They figured out if they did it this way insurance would pay. We have a real crisis looming in our future regarding insurance…

Wednesday April 23rd 2008.

After breakfast I took Kayla to the park because no one would be there during school hours. It was a beautiful day, sunny, nice breeze, and the perfect temperature. Kayla loved swinging on the swing while I tried to tickle her. She then went and climbed on all of the tubes and slide in the park. She also walked the equivalent of a small block. This is a first! When we got back to the house I made her protein shake and added ¼ teaspoon of Spirulina and Kayla loved it. Normally it takes her a very long time to drink her shakes no matter how I make them, but this time she sucked it down and said that the green stuff really tasted good. Who would’a thought? Kayla did not argue about anything today. Ever since I got the news about Megan’s impending death, I decided that I did not want to get stuck into just doing our treatments and not enjoying life. Because of Megan, I had an epiphany and make the effort to figure out joyful things everyday. This has made a big difference for all of us.

Friday April 25th, 2008.

Beach Day! We went to the beach and the weather was perfect! Kayla had a great time but she misses being with kids everyday. Oh well, at least we got out and enjoyed some new scenery and weather. Kayla’s appetite and digestion are doing well.

Monday April 28th, 2008.

Kayla’s ANC is 2800 so today will be a big chemo day. She will get Methotrexate in her spine, Vincristine in her port and Doxorubicin in her port. Steroids start today, but I thought I had two months before the start of this phase. I asked about it and the nurse said I was incorrect. I am almost sure I am not mistaken but they say I am.

I asked the physicians assistant about supplements for Kayla’s bones and she replied that she is doing fine. I hate these f___ing people sometimes because they know all of the side effects but do nothing to help the patient mitigate these effects. To me it is a complete lack of responsibility on the whole medical system to not invest money, time and effort into complimentary and alternative therapies that help the patient get through chemo. It is just maddening! If there were this type of help and support for cancer patients I think the quality of life would be greatly improved. What I see instead is the use of more drugs for every symptom. This is not a solution. Chemo wipes out good cells as well as cancer cells, the steroids suppress the immune system. I know that these things have to be done, but why not use vitamins to help the body cope? Kayla now weighs 58 ½ pounds. She has lost four pounds since she started treatment while she has continued to grow.

Wednesday April 30th, 2008.

 The steroids are kicking Kayla’s ass. She is in a lot of pain. I found a book that we had Reflexology for Beginners, it is helping a lot because I can look for the area of pain and then massage the corresponding area that the book tells you to massage. It seems to be helping her and she likes it.

The steroids cause problems with her stomach and even though Kayla is taking Prevacid, she is still having stomach pain. We made a steroid chart so that we can count down the days until we are done. She liked this activity.

We walked the dogs together, and later she had her protein shake. At 3:00 in the afternoon Kayla felt really bad, tired and dizzy. She took a long nap. I feel like I am on a roller-coaster ride and I can’t get off!



















Monday April 20th, 2008.

Kayla’s blood counts are still too low to do chemo. This is now the third week of treatment that we have missed. The doctor told us to skip the weekend antibiotic because they think it is the antibiotic that is holding her counts down. The doctor announced that another bone marrow is needed and I told her I did not want Kayla to have anymore done, if at all possible.

Megan, another girl that has been battling Leukemia for six years, was turned over to hospice. Her mother and I went and talked in the parking lot. I cried when I heard the news. Then her mom tells me that Megan has accepted the whole thing and is forcing the mother to take her to pick out coffins. Megan is doing her Will and wants her trust to go to another 2 year old little girl who is battling brain cancer. They are also going to have a fund raiser so that Megan can do all of the things that she has not been able to do while on treatment. I met Megan in the Bone Marrow transplant unit. She is one tough chick. She was the girl who went through whole body radiation to kill her immune system. The radiation was so strong that she looked like a ghoul from a movie and her mouth could not shut because it was a giant bloody, crusty sore. I had terrible nightmares for two weeks after seeing her suffering. These are the types of things that are not said about bone marrow transplants. Later I saw a documentary on PBS and it stated that 9 out of ten patients do not make it through the bone marrow transplant process. I do not know if the statistics have improved. I do know of a baby that survived it and is doing well years later.

It makes me so mad and upset that Megan is going to die. Her mom is trying to act normal but she is completely out of her mind. This, my friends, is the dark part of cancer. Another interesting thing the mom told me is that a law is possibly going to be passed so that pediatricians will take blood tests at certain times of a child’s growth to check for cancer. Apparently, all the cells go through major changes at certain ages and this would be the time to check the blood for cancer markers. Personally I think that this is a very good thing.

This photo was at the fund raiser and Megan was tired. It was a long hot day. Its too depressing to tell you all of the heart break this family went through. They lost everything due to six years of treatment and lack of insurance.

The next day Kayla had a good day with swimming and school. We took a long walk (with the wheelchair) together in our neighborhood and saw a bunch of kids hanging out. We went and talked to them. Kayla had such a wistful look on her face when she was talking to the kids. She feels that she is missing out on her regular kid world. And she is right about that. This is also some of the most important and formative years of her life spent fighting a disease instead of going through the normal progress of a seven year old.

We started the liquid multi vitamin today. That was a total pain in the ass to figure out. The doctors told me a multivitamin was fine but they said I had to get one with a low dose of folic acid. (Folic Acid is a B vitamin that makes Leukemia cells go nuts and multiply much faster.) I went to the health food store and the drug store and the amounts of folic acid in the vitamins were all over the chart. When I went back to the clinic I asked the doctor to give me a folic acid dose that would be safe. Back to the stores, nothing existed with the numbers that the doctor gave me. Finally I found a liquid multivitamin that had food sources listed and the vitamin content seemed fine. I printed out the label and brought it into the clinic and the doctor said a half dose would be fine. This product is manufactured by Source Of Life, and the name of the product is Animal Parade Children’s Multi-vitamin. One would think that an adult could take this too by just doubling the dosage amount. Finally a vitamin was okayed!

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