Back on Track/ Sharla’s brain tumor Monday

Well Monday morn we got up super early so we would be the first ones at the MRI machine. Sharla had a terrible migraine from thee spinal tap she had recieved at the ER. As it was when we got to radiology we had to wait for those with appts. as  met we were being fit in indirectly from the ER. It was about ten o’clock when they finally got Sharla in. The technician let Mark go back with Sharla and sit beside her. Even though they were only imagining her head this was back in the “olden days” when the machine was slow and super super noisy. Mark helped Sharla to remain calm and to hold perfectly still. At the end the tech assured us that everything looked fine from her her point of view but of course the images still had to be read by the radiologist. We were given an appointment with our primary care doctor for the last appt of the day.

Well Sharla slept most of the day which was good because this was the day her older sister Angela was moving out to the college dorms. Mark and I spent the the day moving boxes. Well it was finally time to take Sharla to the doctors. We were feeling pretty good and thought the whole seizure thing must of just been a fluke. When we got to the Drs. office it was still pretty full and Sharla still had the migrane so she laid down across tthe row of seats.One by one we watched the other patients come and go. Wondering why we had to wait so long. Finally they called our name (no one else was left in the waiting room) and the nurse led us back to a doctor we had never met before.

The dr meet us in his office not in the exam room. He told us he had something very serious to  talk to us about. He said he barely understood the details and we would have to see a specialist to explain it to us. Then he dropped the bomb- Our daughter had a large rare BRAIN TUMOR!!!  He had no other details for us as he said it was very complicated but he gave us the name of two neurosureons to choose from. We had no idea at this point if it was cancer or operable. Just that we needed to be seen immediantly.

We were all in shock but Sharla really wanted to go to her Youth Dynamics meeting which was starting soon so even though we were reluctant and Sharla still was feeling terrible we dropped her off at her meeting. It was important for her to see her friends and start processing the fact that something very serious was wrong with her.

Next week The mtg with the Neurosurgeon.

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New Year 2015

Well everyone is talking about New year resolutions and I have left mine on my sons blog and do not feel like writing them again. What you do need to know is that my goal for my blog is to add one new post a week. I have not yet decided which day will be best for this yet. I want to finish Sharla’s brain tumour story. Then go on to other extrordinary events. Like my husbands cancer at age 25. His two heart attacks. My bi-polar. My sons adoption.and all the little things in between like marriages and births of my grandchldren (all good things) so you know my life has not just been one tradgedy after another. I actually have what I feel is a good life with a wonderful husband and kids and my whole family. I look forward to sharing these stories with you. See you next week. Candy

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Alex Beadon Blog Challenge Day 7

Todays challenge is to write your opinion about something controversial in your life.  My husband and I adopted an African American newborn son in 1992.  You can’t believe some of the sources of distaste we have come up against over the years. It started with the home study individual doing the write up on our family (which already consisted of 3 biological daughters). She questioned our motives and tried to convince us that a South American child would be better for us. We asked why when the US foster care system was overflowing with Black infants who had little hope of finding permanet homes. Members of our own church thought it was okay as long as we planned to send him “back to Africa” when he was grown and taught a skill to share with his “own people”.  Even the Black Social Workers Union was against interracial adoptions stating it was a form of racial genocide.

Well let me tell you our son is now 22 years old and a college graduate. He is a well adjusted young man with a high self esteem.  He lives mostly in a white community but gets along with other blacks in his same economic leval. Just like all of us live within our economic levals.

All children need stable loving families and race should never be a consideration. Children should never be denied a family because of race. I strongly believe in this and you could never get me to change my mind. I am willing to answer your questions regarding our experience. Thank you Candy

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Alex Beadon Day 6 Challenge

Alex wants us to write about something vulnerable that happpened in our lives that others could relate too. Well earlier in my blog posts I had written about my strokes. I decided to just copy and paste a little of what I had written then and if your interested you can go back and read the whole story and see some pictures. I hope you find this story inspiring. Actually it copyed and pasted backward so start on the last article and work your way up.

Second Stroke Finally a Diagnoses

So after my TEE the doctor sent me back to my room. I still had no idea what was going on but the doctor wanted to talk to my husband and me both. They told me something extrarordinary had happened. Apparently when I had my pace maker placed back in November there was a little hole ( a common birth defect) between the chambers in my heart. Instead of going into the right chamber the wire lead had ended up where it didn’t belong in the left chamber. This is so dangerous because the heart rejects anything in the left chamber by forming clots around it and guess where these clots go? Straight to the BRAIN where they cause strokes. We later found out that this has only happened THREE TIMES WORLDWIDE so the doctors were totally amazed at these findings Since this was so rare none of the cardiologists in the small town where I lived wanted to attempt the surgergy to remove the lead and replace it with a new one. You see the dangerous part is the lead is made like a fish hook with barbs on the end to help it attach to the heart muscle so it will stay in place. The surgergy would require winding the lead back through all the valves and vessels without catching anything that would cause me to bleed out in seconds and cause death.  Then a MIRACLE  happened a young cocky cardiologist from Phoenix just happened to be in Flagstaff for the weekend and he felt sure enough that he could perform this surgery even with the odds against him. We went with our gut feelings and chose him. (remember this had only been done three times before so it wasnt like we were going to get anyone more experienced).

Telling the family was difficult. They wanted to do the surgery   that Friday but I had already eaten so even though they were worried about more strokes they put off the surgery for first thing Saturday morning. Telling my daughter in Japan was so hard because I was supposed to be there in just a few days. It was hard to convey the seriousness of the situation to her. My second daughter took it pretty well and became my go between to the rest of the family (she was unable to come because she has three young children). My third daughter responded immediately and it was very important to her to be with me during my surgery and recovery. She was living in Oakland, CA at the time and her roommate found her a red eye that would get her in Flag just in time. Thankfully my Dad was able to help out. My Dad is a very quiet guy but he was very concerned about me having my surgery in Flag. They had informed me that if things went bad I would have to be transferred by helicopter to Phoenix in the middle of the  operation. This had my Dad very concerned. OH by the way they had already determined that my eyesight was permanately damaged. Anyways next to come The Surgergy

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Second Stroke

It was the end of March 2012 on a Thursday exactly on the dot at 7:36 am. How do I know the exact time because I was following my housekeeping challenge “Side tracked home Executives”.  I was vacumning and I felt just a glimmer of the right arm neglect that I had felt the first stroke. It was so slight that I didn’t want to say anything to my husband mostly because I was suppose to be leaving on a much lounged for trip to Japan on the Monday coming up. But as I thought a few minutes more I changed my mind because my husband was suppose to be in a class from 8 to 5 and would be hard to reach all day.  The moment I told him things went into hyper drive and my husband once again decided to drive me to the hospital but we didn’t waste any time with phone calls just straight to the car and the ER. Once again stroke protocols went into action and even though I felt a little silly (making something so little into a big deal) the hospital took me quite seriously.  During the Mayo clinic exam with the computer it was diagnosed that I had lost the right side of my vision in both eyes. I hadn’t even noticed this on my own. The SUPER BIG QUESTION was WHY and How had this 2nd stroke occured since I was already on blood thinners. So I was admitted to undergo many more tests.                                                                               The test that found the cause was a TEE which means swallowing a camera and allowing the doctor to see the heart from the inside.  A VERY uncomfortable test but one which is only supposed to last about 15 minutes. You have to be alert for this test so only a small amount of calming meds are given plus a little to numb your throat.  As soon as the camera was in place the doctor got extrememely exicitable and started exclaiming “What is this” What am I seeing”. He started calling all the nurses , techs and any other doctors around to come take a look. All this took extra time of course so there I am gagging on the camera unable to say a word or ask what is going on.  Next episode Permanet Loss of Sight and THE REAL CAUSE OF BOTH MY STROKES !!!!!!!!!!

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at the hospital

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Stroke One- The Hospital

When we arrived at the hospital my husband (Mark) ran in ahead of me and informed the staff his wife was having a stroke. Immediantly the staff went on stroke alert and stroke protoccals were set in motion. I was whisked by wheelchair into a room where an IV was started as I was being dressed in my beautiful hospital gown. Then before the doctor even got there I was being hurried into the CAT Scan  to check for bleeding in the brain. Then Woosh back to the ER for blood work and tests. I was being asked by doctors and nurses what my spytoms were . I was still so confused I could barely keep up with what was happening. Then tecnology stepped in an a computer with a large screen was added to my room. A doctor from the Mayo clinic would be examining me thru the computer with the ER nurse acting as his hands. I went thru quite a series of tests before it was determined my stroke was over and I had experienced right hand neglect and temporary facial droop and speech slurring. I would be staying at the hospital for several days for monitoring and further tests. If you read the comment left by my daughter Angela you would see that new years day was an eventful day for our family. Angela had just had her baby in Japan on Dec 27 and my daughter in Seattle was bitten by a dog (breaking up a dog fight) and spent New Years eve in the ER. So all three of us were in the hospital at the same time. Well the doctors never did find a reason for my stroke but since I had just had a pace maker placed in Nov (thats a whole story of its own) they decided to put me on blood thinners to prevent another stroke.Stay tuned for Part 3 Candy suffers another stroke and the wacky 3 in the world reason why.

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My first stroke

My first stroke was an amazing event. It took place on December 30,2011 at preciously 8:15 am. Or thats when I woke up anyway having the strangest feeling. I felt something hitting  my behind on the right side I turned suddenly to see what was behind me. I thought to myself that my husband was playing a trick on me and was giving me a friendly pat on my toushe. I grabbed for the hand that was hitting me and realized it (the hand) was wearing my pajamas. I couldn’t comprehend what was happening so I went downstairs where my husband was working on his computer. The screen was not working correctly so he told me to text our son. I was having so much difficulty hitting the right buttons but still didnt say anything to my husband. When I finally did speak my husband (Mark) kept repeating “Why are you talking baby talk” “Stop that”. Then he turned around and saw my face and screamed out “Oh my God, your having a stroke”. I had no idea what he was talking about. But he said we had to hurry and get to the hospital. Apparently The left side of my face had the tell tale sign of a droop and my speech was still slurred. I was at this point able to dress myself and Mark made several calls to the nurses on the floor where he works as an RN and then called one of the doctors. I still didnt know what was happening but was getting scared by Marks reaction. He decided not to call an ambulance (which he later questioned his own decision) and drove me to the Emergency Room himself.  Now two years later he is recieving therapy for PTSD from those first few moments when he didn’t know the full serverity of my condition. Was I going to die? Or suffer permanet damage? No one knew at this point in time. Part two will continue this story The Hospital.

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Blog Challenge Day 4 : Ten Things you don’t know about me

At first I thought this would be really difficult but now I actually think it will be a breeze. Easy ones first- I like to quilt once a week with my best friend Joy,We also sew matching dresses for our granddaughters and make frilly one of a kind photo albums for presents.We go to Cracker Barrel eveyother Sunday before church and now my entire wardrobe is made up of clothes from “The Old Country Store”. We also love to go to the nearby casino and play the penny and nickel machines.  With my best friend Hope we get together once a week to scrapbook or cross stich. Everyother week we go for our manicures and pedicures and have a great time pampering ourselves together. We also get our hair done together every 6 weeks. Plus we work out together at the gym with our trainer. And walk the lazy river.So as you can see just between these two  friends you have learned ten new things about me. EASY!!!!!

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Blog Challenge Day 3 Tutorial

Todays challenge is to teach you something that I find interesting. I would like to show a first timer how to scrapbook a very simple but attractive page.

1.   Go to a craft store pick out two complimentary 12 by 12 inch paper.

2.Buy a pack of stickers that compliment your theme. Buy some acid free glue.

3. Pick out 3 pictures that go together.

4. Make mats with one of your color papers. Cut the paper about 1/4 inch bigger than your picture. Make 3 mats and glue your pictures to them.

5. Place your pictures on the other peice of paper. Play with angles. Glue down

6.  Place your stickers on the page complimentating your pictures.

7.  If you would like add a little text about the pictures with an acid free pen.

THERE YOU DID IT! Now try it with more pictures buyng a pack of prepackaged paper!

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Alex Beadon”s Blog Challenge Day Two

The challenge today is to write about your passion in story form and PASSIONATE!!  Well I’ve always wanted to be a writer. Even when I was in elememtary school I kept a private journal. Of course thru the years myy ability to keep up with my journal has waxed and waned but my love of writing has always been there. I was an EXTREMELY SHY little girl but had a Great imagination.. I had a small gathering of loyal friends and everyday after school we would gather in the empty lot next to my house and I would reveal my dreams to my friends.These became fantastic journeys with complicated plots and characters. I was between 4th and 6th grade when I started this.

My first real recognition came when I was in 6th grade and we were given an assignment to write a story about the civil war. I let my imagination take over and developed a story about Tom and his little sister Sarah living in the South. No one was more surprised than I when the teacher chose my story to read aloud to the class. Noone could believe this shy girl who never talked had this kind of story living inside her.

In Girl Scouts I felt safe and as I entered junior high I began writing plays for our group to act out. In high school my family moved and this put me in turmoil but my imaginary life gave me a place to retreat to.

When I got married and had children of my own I really florished. I had a captive audience of my own four children plus all the neighbor kids flocked to our house for popcorn and stories.Also I got my degree in Early Childhood Education and I was able to bring my children and storytelling with me.

Now I’m an empty nester with grandchildren to tell stories to but I also have lived thru many rocky times. I feel compelled now to share my life’s story with others to give them inspiration to never give up. You will see in my beggining blogs here I have already started with the story of my two stokes and now have began to write about my couraguos daughter and her brain tumour. I hope you will take time to read these stories. It is my hope to someday put it all together in a book. Thanks for taking time to read this. I hope you will leave me some comments. Candy

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Blog Post Challenge Day One

I am taking the Alex Beadon Blog post challenge. First I want to say that I have been challenged to write a new blog every Wednesday so be on the look out next Wed for the continuation of Sharla’s Brain Tumour Story. Now on to the 7 day challenge. Who am I? I am a 58 year old wife, mother, and grandmother who has led an incredible life of tremendous challenges and triumphs. I started blogging because my 22 year old son said I could and he got my page all set up for me. I felt I had a life story that could inspire others. Especcially those going thru hard times who needed some encouragement. My blog page is for anyone any age needing encouragement during time of trails and tribulations. Something I’m real proud of right now is I have been active in raising money for our local NAMI (National Asscoiation for the Mentally Ill) group use for helping those with Mental Illnesses get gym memberships and personal trairner hours. I myself am Bi-Polar so this means alot to me and I have been going to the gym with the help of NAMI for over two years. The one message I hope people take away from my blog is that no situation is ever to hard to get thru – never give up there is ALWAYS help from somewhere or someone. I hope you come to my blog page and read some of my extraordinary adventures. My address is http//candymom926.wordpress.com

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Candy gives talk for community funds

I am going to take a short break from Sharla’s tumour to tell you about a community event I am going to be a part of. As most of you know I have been exercising with a trainer for the last two years. What you may not know is I have never had to pay a dime for memberships or the trainer.Its all been paid for thru grants and donations. Well its time to renew the grants and find new donors. I have been asked to be part of a 4 member team to present our story to the organizations in Flagstaff who regularly give monies to organizations in need. We are trying to raise $6,000 dollars to keep our program going for another year. The presentation can only be 8 minutes and I have been given 3 minutes for my part. I am going to write out my whole speech here to help me memorize it and give you guys a chance to see what I am up to. So here it goes:

Hi, my name is Candy. I am a wife, mother, and grandmother of 5 with one in the oven.

I have Bi-Polar illness which leaves me with a tendacy to isolate from others and causes me to have servere depressions and anxiety attacks. I have also suffered two recent strokes because of a medical mistake. This has left me with with a permanent visual impairment, left sided weakness and problems with balance and co-ordination.

I have been a member of NAMI for over ten years. I sign up for as many classes as I can as Im always trying to improve myself. I was one of the first to sign up for the exercise program. I really believe the mind and body work together. You can’t heal the mind without healing the body my doctors also totally agree with this.

When I first started exercising I immediantly noticed a difference. I was re-connecting with old friends and making new ones. The exercises also lightened my dark moods.

After recovering from my strokes I was happy to return to my exercise program. I was lucky to have Travis as a trainer to work out a program for me.Travis is a great trainer. He keeps you laughing even when he’s torturing you to work harder.
One of the things we worked on was the balancing ball. at first I could’nt even stand on the ball and now I can balance and lift weights at the same time.
Another thing I like is the lazy river in the pool.Not only are you building muscle but your making friends at the same time.
I’ve been so happy with my progress that I have inspired several of my friends and family to start exercising also.
As an added benifit at my last eye appoitnment I had a slight improvement in my sight caused by an increase in oxygen to the brain which of course was caused by increased exercise.
I have gained so much confidence being around other people thru this program.
Here is a picture of me close to 200 lbs and here I am at 170 and now I’m at 147lbs and enjoying Flagstaff’s shops and cafe’s with my husband and friends.
None of this could have been possible without the funding and support of the NAMI
Wellness Project. Thank-you

SANY0031

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Sharla’s Brain Tumour The ER

I haven’t written in so long because this is such a difficult subject and I don’t want to embaress my daughter. But I would like to continue. Today I will just write a short note about that first night in the ER. Of course at first their was a flurry of activity. Getting Sharla into a hospital gown getting blood and urine samples etc. Then the doctors exam. It ended up my husband Mark knew the doctor from when he worked as a paramedic in the Army at Fort Lewis.So that made things much nicer right away. It was detrimed right away that yes Sharla had suffered a full blown seizure and no drugs or alcohol were involved. But that left a big question of WHY had a healthy 15 year old had a seizure and probably several we didn’t know about. So they ordered a CAT scan. We had to wait awhile cause the CAT scan people had to come from home. Mark and I were so scared and worried. It was now two or three in the morning. The doctor said we could go back with tthe tech doing the scan. He went very slow and at the end said he really needed to do  a second scan with contrast and call the radiologist in. So this took more time. We were still in the little room with the tech but about half way thru we noticed that the radiologist was trying to talk to the tech and kept pointing something out. We got the clue we should leave so they could do a through search. This was the hardest time waiting cause we really felt something was wrong now. We went and got candy bars from the vending machine. We met Sharla back in the ER.. The doc came to talk to us and said they had seen something unusual but the CAT scan wasnt clear enough. We would have to come back Monday morn for an emergency MRI. In the meantime Sharla had gotton cold and they wrapped her in eated blankets. this was about 5 in the morn. Now as a last dish solution they said they had better do a spinal tap cause her temp had gone up.They had Mark and I hold her down for this and the nurses complained but the doc assured them Mark knew what he was doing. Now we waited for these results of course they showed nothing and now sharla would suffer from the spinal. Finnally at 5 they sent us home with instructions to come back monday morn. Next The MRI and the long wait for the results (all day monday).

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