Monday, April 27, 2015

The Dawson Family - A Little One and Chemotherapy

It has been a while since I have posted...things have changed in a not so pleasant way.  One of my grandchildren has a very serious medical problem that has taken a toll on our family.  This is perhaps the best way to explain: 


When I look at this photo it makes me cry because I see how much she has changed.  She now has difficulty walking, hearing, speaking, and seeing.  (When she speaks her speech is very, very difficult to understand...)I just want to put my arms around her to keep her safe... 

For more information on the disorders that have impacted our Melody and so many other little ones - Langerhans Cell Histiocytosis, diabetes insipidus, and neurodgeneration please follow these links: 
http://histio.org/lchinchildren
http://histio.org/page.aspx?pid=407
http://www.cancer.gov/cancertopics/pdq/treatment/lchistio/Patient#Keypoint10

Two years has passed and today we prepare for the worst.

Angel and Art are trying to get prepared to go through the next round of chemotherapy the end of this month.  As parents of a child with Langerhans Cell Histiocytosis X they have watched the disease progression with an increasing sense of powerlessness.   I hear the worry in their voices when we speak each day.  Melody has changed so much since her initial diagnosis.   She is no longer the ray of sunshine that lit up our lives... she is very sick.

She has to endure another year of chemotherapy.   There are two lesions in her brainstem that did not respond to the first chemo treatments.  She is quite ill right now with fevers, nausea, and vomiting.  The chemo is taking a toll on the whole family with each and every treatment.  We all worry about her and seeing her like this is difficult.

Melody has a walker that she uses at school these days.   Her gait is very unsteady; she stumbles and falls quite easily.  She needs help to get around.  Her classmates are very supportive.  They are always careful not to bump into her.

Melody has a special tablet that speaks for her; her voice and speech have become very difficult to understand.  She has neuronal degeneration some of which came from the chemotherapy.

Melody does not understand what is happening to her...she asks her mother why her legs are so wobbly.  She gets frustrated when people don't understand her when she speaks.   Angel tries to gently explain the illness but in a way I am glad she does not (understand) how awful it can be.  It is something I struggle with daily...I wish there was something I could do to help.

Throughout all of this we have been glad for each and every day that Melody has been able to be happy.  I joke that as long as she is running around and yelling at her brothers she is good!  That has been my yardstick to personally gauge how she is doing.  These days she does not walk well and she does not run through the house.  I must admit that I am concerned that this is much worse than we ever knew it could be.
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They have been treading water for the past two years.  The house is in need of  repairs that have been put on hold while they are taking care of the children, finding their way with Melody's health issues, and waiting for things to get better.  It is a very difficult time for the family.  Not knowing what else to do,


Saturday, October 4, 2014

Moving forward...

I must have had some intuition that something was wrong when I was yearning for the soothing comfort of my simple life.  The fatigue was so overwhelming.  Maybe some part of my body was aching for rest or did I sense what was coming?

The last week has been a blur of ER visits, pain, nurses, pain, antibiotics, more pain, scans, pain, surgery, less pain, med-surgical staff, and physicians as I made my way through a very serious health crisis. Did I mention pain? 

I find myself sitting here in my trailer resting and reflecting over the whole experience.  My schipperke pup, Little Dude, is stretched out on the floor watching me as I type.  He found it...brushing up against my chest when he jumped in my lap.  I felt nothing until then.

Did it really happen?  It did.

No work.  No lifting.  Do not get the wound wet...no showers.  Take it easy.  It will heal from the inside out.  Don't overdo it.  Nurses will be coming daily to change the dressing and repack the wound.  It is not breast cancer...there was no malignancy.  Does it hurt?  Is there any increase in the amount of drainage? Do you have a fever?  Did you say this is gross? You are so funny...lol. 

Lets face it, an open hole in my chest is gross, right?  The sensation of someone pulling a packing out of my breast is gross.  The bubbly foam of hydrogen peroxide clearing out debris is not ideal but I can handle it much better than the packing activity.  The feeling of someone pushing a packing back into the wound is gross.  Wait, on a scale of 1 to 10...this is not even a 2.  When the doctors were pressing on my breast I thought I was going to pass out...this is proof that I am on the upswing.  It is getting better. 

I sure do appreciate the peace and quiet.  I need it...  God, this is too real.  Can I wake up now?

Sign me, Resting and Recuperating in Small Town America (Florida), M

Wednesday, September 24, 2014

I found a set of links that I would like to share.  Living simply may mean living homeless to some people.  This is really interesting: 

http://doingithomeless.com/11-places-sleep-free/

http://carliving.info/101.htm

http://doingithomeless.com/moochtip-how-to-save-your-money/

These articles are a look into how the other half lives. 

Sign me, shopping for an RV in small town America, M

Tuesday, September 16, 2014

September 16, 2014

Today, I am enjoying the breeze from my fan.  They say it will be cooling off later this week...lol.  It will be in the 70s at night and the coolest it will be during the day is 84.  Still, it is September, so it will be cooling soon.

It is so beautiful here in the park.  The trailers are all neatly kept; the neighbors are getting ready to go into winter mode.  The Tuesday morning coffee get together will be starting up soon.  The shuffleboard is waiting for the snowbirds to return for their weekly games.  Pot lucks and breakfasts are on the agenda as we ease through September into October. 

Several new faces on my little street as some of the older tenants have moved on...some have passed and some have moved north to live with family.  Other tenants have purchased new trailers from those who have migrated north.  We have grown as a community.

It is good to be back.  I have missed it.  It is time to chill-ax.  God is good. 

 

Monday, March 17, 2014

Credit Karma

In November 2013 I found Credit Karma through their advertising like everyone else.  Just saw the ad, you know, they are the company that does not require a credit card to give you a free credit report.  I got the free credit report and noticed that the by had a credit repair company called Lexington Law that partnered with them.  They had several programs that they offered; I chose the one that cost $59.00 monthly by default.  The more expensive program was $99 and I hesitated to spend that much.

Lexington Law assigned someone to me who reviewed my credit report and the wheels started turning.  There were letters written to the credit reporting companies disputing four items on my credit report.  These items were paid off but had been in collection.  How does that help, you might ask?  The best way to explain would be to share the results...my credit score climbed by 71 points since December 2013.  It is March 15th and I am very pleased.

My Credit Karma page provides me with an overview of my credit situation.  There are suggestions that have helped me to begin rebuilding my credit.  I applied for a credit card that permits me to make purchases and to pay the bill expeditiously.  This is an improvement that is reflected on my credit report and this has had a positive influence on my credit score.

Another recommendation that my Credit Karma page offered me was the option to seek refinancing for my car loan.  In October 2012 I purchased a 2011 Nissan Versa with the less that adequate credit score.  My interest rate is 20.46%.  I have quite a few payments left and my monthly payment is not too high.  I did apply for refinancing as this seemed like a very reasonable thing to do.  I have spoken with someone already regarding a much lower interest rate.  My payment will be much less; I do want to pay the car off faster once I get the lower rate.

Monday, March 17, 2013

Got a call this morning and I got an offer to refinance my car at 12% from Wells Fargo.  This is a definite savings for me!  Not only is this a saving of 8%  my monthly payment is less.  This is exciting!  Being frugal is just the best.

Moving forward, I am still concerned that I am not doing the best that I can do.  I am not saving as much as I would like to at this point.  That is very important to me.  I do feel that I need to re-commit to living simply and being FRUGAL.  There is a great difference between want and need.  I need to re-focus!

Sign me, getting back to simple things in small town America, M