Tag - Insurance

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Death
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Insurance and Pain Management

Death

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!

Insurance and Pain Management

Friday February 8th, 2008

Kayla is 4 foot 1 and weighs about 66 pounds.  I am 5 foot 5 and weight about 120, so you can imagine how difficult it is to carry her.  Yet, this is required because she cannot move on her own.  What is really hard is lifting her from the floor. I sound like a power lifter at a competition.  Jeeze the stuff we do. I lift weights every night in our garage to be able to keep lifting her and moving her.

Yesterday, when we were leaving the clinic Kayla did not want to wear her hat.  We had spoken about this and she has to wear a hat when we go out due to the sun.  Yesterday, it was cloudy, so Kayla asks to take off her hat outside.  I tell her about her being in the wheelchair and bald and how this can scare people.  She gives me a look like “scary? give me a break!” I told her okay, go ahead and scare them all who cares.  She tore her hat off with a flourish and was beaming the whole time.  It is these moments of time that are so precious.

I tried to get a Hoyle lift for Kayla.  This is an apparatus that has a winch and is used to move people.  Bill and I thought this could be used when lifting Kayla from the floor.  Turns out it is too wide for our hallway so we nixed the whole idea.

We watched Harry Potter together in our bedroom.  Kayla was so happy that we were having a “family movie” together.

Insurance does not want to pay for the Prevacid because they only allow 1 pill a day and Kayla takes two.  The nurse at the clinic is trying to help us out on this.  In the meantime Bill bought some and found out they cost $10.00 a pill. These pharmaceutical companies are just criminal. I do not understand why the costs are so high? In other countries these same medications are one quarter of the USA price!

This new cast seems much heavier than the previous one.  I called the orthopedic clinic and to see if we could try and get a lighter cast.  Hers is the standard cast.  They did not think it a good idea and then the person on the phone pointed out the pain I would be putting her through to change the cast.  That was good advice so I nixed this idea too.

Saturday,  February 9th, 2008 Pain Management

Good day.  Kayla did her exercises in bed twice, watched movies, etc.  The pain is bad at night and Kayla is up at 11:30, 2:30 am and 5:00 am.  I called the clinic during the day, and the on call doctor said that pain has to be managed.  In other words do not let the pain start.  If the pain goes away and then comes back it is much harder to handle.  She then directed me to give the morphine every four hours even if Kayla is not exhibiting pain symptoms.  This is correct management of pain.  Who knew?  Now that we are all so fried, I wish I had known this before.

Monday February 11th, 2008 Consolidation 

The first phase of treatment is called Induction.  We have finished Induction and begin Consolidation. Today is day 1 of consolidation.

Today the nurse had trouble accessing Kayla’s port.  There were a couple of attempts and Kayla was crying.  I was suddenly dizzy as if I would pass out.  I had to sit down and take breaths.  This kind of thing has never happened to me before. I like to try and sound normal but the fact is that the stress of cancer and treatment are enormous. I take vitamins, try to sleep, work out almost everyday, and all of these things help but the stress is still bad.

Then we get stupid mistakes like this one and one wonders how they don’t just rip someones head off! This is going to sound really retarded but the script for the morphine said 2 ML.  Somehow when the prescription was filled the written amount was not understood and we were directed by the pharmacist to give Kayla literally drops instead of ml’s.  Now I understand why Kayla has been having such a hard time. What I learned from this is to get the doctor to read you the script so that you can make sure what is written is understood at the other end. But also, in the least you will have directions straight from the horses mouth so even if written wrong you have the correct information!

Dr. S. wants to X-ray Kayla’s back because she is saying that the pain she is in is not normal.  The X-rays came back with something on the 5th lumbar and now they want to do an MRI tomorrow.  We will go home and then come back three days in a row for the next phase of chemo.

Tuesday, February 12th, 2008.  We are admitted to the hospital.  The MRi is done while Kayla is sedated.  Once back to our room we ask if we can just stay in the hospital instead of going back and forth because of Kayla’s back.  Getting in and out of my van is brutal with Kayla’s bad back. The doctor agrees.  What a relief! 

Kayla’s skin is starting to peel on her face and hands.  The nurses gave us a greasy cream but it is hard to rub in because Kayla still has sores spots all over the place.  Other than the peeling, Kayla is looking and feeling better because we do not have to move her.  I think she just needed time to let her back heal.  Our main focus is to keep Kayla laughing.  This is from the book Comprehensive Cancer Care by James S. Gordon and Sharon Curtin.  This book is by far the best book on cancer, better than anything I have read so far.  I highly recommend this book!

 

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