Sunday, July 29, 2007

A Baby Boomer Dreams of Arabian Horses Part 16


Part 1

For those people who are new to this blog, this story is about something that happened years ago, 17 years ago to be exact. This was back in the day when I was first getting into horses, Arabian horses to be specific. I had always dreamed of breeding but life happened and put a hold on my dreams to breed Arabian horses. However, this event didn't just slow things down, it still affects decisions I make today. That's why I thought it was relevant to post on this blog about my dream.

This picture is of Nick and Lindsay with Lindsay's pony, Poa Mos Punch. The picture was taken just before she was diagnosed with the brain tumor.

To pick up where we left off. My ten year old daughter, Lindsay, has had surgeries to remove a brain tumor and to relieve excessive fluid on her brain caused by that tumor. She had complications from the surgery and the balance center in her brain was all but destroyed leaving her unable to walk or talk or even control the movements of her limbs or her eyes.

By the time the test results came back from the tumor biopsy, I was already pretty sure that we were dealing with cancer. It was no surprise when I was called into the neurosurgeon's office to met the hemo-oncologist. What did surprise me was that despite the damage that had been done from the surgery, they still planned to begin chemotherapy and radiation immediately.

We got lots of assurances the treatment plan for Lindsay would would have little long term effects. The massive doses of radiation to Lindsay's brain that would be administered five days a week for a total of 4 weeks along with a course of chemotherapy would be followed by a short break. for Lindsay's system to recover. Then a regime of chemotherapy would be started. This chemotherapy would be administered once every six week for a total of 24 treatments, if my memory serves me.

The side effects ranged from the usual low blood counts, nausea, vomiting, diarrhea, hair loss, and included hearing loss, a possible drop in IQ, nerve damage, brain damage and I don't even remember what else.

When it came to my choices about the treatment to be perfectly honest, I felt stuck. As much as I did not believe all of their assurances, I felt that I had little knowledge to fight their recommendations. I was afraid to do so would have meant I would find myself in court with my parental rights at the mercy of a judge. I knew full well, that the experts always win in such cases and I did not know enough to be the exception to the rule.

The best course of action would be to go along with the recommended treatment. That way I would be able to be an advocate for Lindsay along the way. Since Children's is a teaching hospital there would be things in the course of her treatment that could be pro teaching hospital and not so much in the best interest of the patient. As a participating parent I would be able to protect Lindsay from such decisions (and believe me, I did!)

The other issue in all of this, of course, was LIndsay's brain damage from the surgery and resulting posterior fossa syndrome. While the damage to Lindsay's brain may have continued with the subsequent swelling, Lindsay fought against its results. Lindsay managed to retain her ability to swallow as well as her ability to remain continent much to the surprise of the professionals.

They didn't know Lindsay! There was no way that kid was going to mess herself! They couldn't even get her to use a bed pan. Despite her inability to control her limbs, she insisted on being gotten up to use the facilities. They did, however, manage to convince her to use a portable adult sized potty chair.

Also, much to the docs surprise within just a few days Lindsay regained the control of her eyes! She still had some small problems with them but she didn't look cross eyed anymore. That drive and determination would play a big role in Lindsay's recovery process.

The biggest concern to Lindsay was her hair. So Lindsay and I had a deal, when she lost her hair, I was going to cut mine off. I wasn't going to shave my head because my cowboy hat wouldn't fit and I couldn't afford another one, so I would keep just enough hair so my hat would stay on.

To be continued...........

Part 17

5 comments:

  1. You're my inspiration. What a Mom you are. The more I read, the more I think you should have been given the Mom Of The Year award - A long long time ago.

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  2. Oh my....how heartbreaking! Ya have me on the edge of my seat here!! ((HUGS!!)) It sounds like you're one heck of a great mom!

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  3. Wow...THAT is a story. I am new here and that took me right in. I've been looking at your beautiful horse photos too!

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  4. I don't know what else to say but "WOW"! I think if I had to go thru what you were going thru, I would of melted. Or at least have a serious melt down. I probably wouldn't have been as stable as you were.

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  5. Hooray for Lindsay for being so tough! And Hooray to you, too, for being such a good mom!

    I never realized that Children's was a teaching hospital...that must have been one tough spot to be in for you. I hate how so many in the medical community take advantage of our lack of knowledge.

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