Poem written by Chase Hinote

Chase wrote the following poem for his Nannie in October 09 and gave it to her as a gift on Thanksgiving 09.

Now Now Nannie Feel Better

Watching cheering my fan
Standing tall through it all
Now Now Nannie Feel Better
She still smiles
She still loves us
She still laughs
Now Now Nannie Feel Better
Confused sometimes
Brave everyday
Make her sickness go away
Now Now Nannie Feel Better
Loved by family
We all pray
Now Now Nannie Feel Better
My Mom’s mom when she was a girl
The bestest Nanny in the world
Now Now Nannie Feel Better

Mom passed away on Christmas Day due to complications related to her treatment for Glioblastoma Multiform Grade 4. We are so unbelievably proud of her strength and courage through her fight to overcome this horrible diagnosis. She was surrounded by family and friends at her passing. We appreciate every one's love and support through this very difficult time.

Service Information
January 2, 2010 at 1:00 p.m. and will be held at Moss Feaster Funeral Home in Largo. For those that inquired about sending flowers the address is: Moss Feaster Funeral Home 13401 Indian Rocks Road Largo, FL 33774(727) 562-2080 Or Soon donations can be made to "Miles for Hope" at http://www.milesforhope.com/

Mom's obituary was published is the St. Petersburg times today and can be accessed online using the link below.
http://www.legacy.com/obituaries/sptimes/obituary.aspx?n=roberta-fiedler&pid=137920028

Wednesday Update

What a long day ..... Mom had an "uneventful" night last night. This made all of us really happy this morning. She made it through the night without being put on the ventilator and seemed to be doing well. She was awake through out the day and sometimes rather chatty. Around 2pm though things started changing. We noticed that Mom's once good stats were slowly declining. Her oxygen saturation levels were once again in the 80's and her heart rate was well over 100. They mentioned the ventilator to Mom but she requested them to upgrade her air mask to the higher level mask. This new mask forces air into her lungs, which allows her body to do less of the work. Once she was put on the new mask her levels jumped back up into the 90's. The doctor explained that she did get a little worse today but that this is some what normal as the medicine has not had time to kick in. He thinks we need to give it until tomorrow night or Friday morning before we become concerned. All we want for Christmas is Mom to respond to this medication ;) So now it is just a waiting game to see if the medicine will help and to see if the new mask holds her stats high enough. If the mask is not successful then she will be put on life support to help her body cope with the stress of all of this. Please pray for her to stay off the life support and to give her strength to continue to fight this. She really is a strong woman .... such a little fighter. She amazes us with her strength and attitude. We are so thankful for all your prayers, messages, phone calls and thoughts. We are truly blessed to have such a great support system. We will try and update the blog again tomorrow. Merry Christmas Eve Everyone!

Mom wanted me to post Jim's facebook status this morning. I read it to her. It made her cry but at the same time she was so pleased that her husband wrote it.
"Merry Christmas and Happy Holidays to FB family and friends. This is the first year that I can remember that Christmas was not centered around gifts, parties and excessive commercialization. This year will be a simple one of hope and strength for what may lie ahead. Perhaps the real meaning of Christmas after all..."

Please keep her in your prayers .....

Mom was admitted to the hospital yesterday 12-21-09 because of symptoms of pneumonia. The doctors are telling us that the pneumonia is most likely being caused by complication from steroids or her chemotherapy. The chest x-rays and other tests show that her lungs are filled with some sort of infection. They have however ruled out any issues with her heart. They have said that her heart is very healthy and is not a cause for the pneumonia. She was put in the ICU this evening because they were having a hard time regulating her blood oxygen levels. They should be in the 90’s if not 100. Mom’s levels were in the 50’s. They are treating her with antibiotics and high levels of steroids while they try to pinpoint the exact cause of infection. There is a possibility that they will place her on life support to help her body while they try to get everything under control. Mom is alert and understands everything that is going on. She remains very optimistic and hopeful that this to shall pass and that soon she will be home with the family. She most likely will not be home for the holidays … this is hard for us, but more than anything we just want her to get better. This is obviously a scary time for all of us. We will try and update the blog as much as possible.

Update

Mom just finished up another round of chemo on Saturday and is doing very well considering what the past month has been like for her. After her round of chemo in November she had a grand mall seizure. She was rushed to the ER via ambulance on November 7th and came home from the hospital on November 10th. It was a scary experience for Katie and Jim but Mom doesn't remember a thing. On that Monday (November 9th) Mom was asked what she last remembered and she could only recall what she had done that Friday morning before, which was watching Regis and Kelly on T.V. in the morning. She was taken home on the 10th but with instructions that she is not to be left alone anymore for long periods of time, if at all. She has been put on seizure medication and will always be on it. Since the grand mall she has had small tremors we call them and one good seizure that we know of last Friday (December 4th). Mom tires very easily and sleeps a lot.

Mom has lost a lot of her strength in her legs and can no longer get up from a couch, dining room chair or regular sitting chair. Even getting up from the toilet is no longer an easy task so we had to buy a special seat for her. She is able to get in and out of bed so that is where she spends most of her time. We are in the midst of getting her a lift chair for the living room. She is very excited about this and cannot wait.

I know to some of you this may seem like doom and gloom of a post but this is the reality of it and from this date forward Mom wants everyone to know the truth. She is in great spirits. Yah, we've had some set backs with the seizures and her losing strength but she is still very positive and holding on to hope.

She misses you all so much at Essilor. As you all know by now she is not returning to work. She is on permanent disability and has officially "retired" and waiting for MetLife to approve her long term disability. Social Security already has and will be starting up in January.

Now comes the hard part for some of you to read. Some may already know this information but most do not, so here it goes.... The type of cancer Mom has is GBM (Glioblastoma Multiform) Grade IV which does not have a good prognosis for life expectancy or quality of life. Please do not believe everything you read on the internet. Mom is taking one day at a time and not focusing on her numbered years. She does have another tumor that was found but it has not progressed since July and its only 81/2 to 9mm in size. Very small in comparison to the 5cm tumor she had removed in July. The doctor has very high hopes for this one for nonprogression. The chemo and radiation have halted the growth on this tumor. THANKFULLY! This type of cancer is on a person to person basis. The Texas doctors told us 11 months for a life expectancy for Mom. The doctors at Moffitt here in Tampa have told us 15 to 17 months. But, each case is different due to the quality of operation and medications. Mom feels she had a very good surgeon and has faith that he did get 99% of the tumor removed like he told us.

Thank you for your thoughts and daily prayers. They are very much appreciated and felt in our hearts. This has been a lot for all of us as a family to take in. This cancer is what it is and we will take care of her the best we know how. Hugs and kisses to all!

Hope in a bag ....

Last Wednesday was a tough day. We (Katie, Mom, Jim and I) set out for Tampa bright and early in the morning. We set out to get the answers and chemo we had been waiting for. Well, after a long day we came home with only half of what we were looking for. Mom got the okay to start the chemo. However her counts were still low so they wanted her to wait til today (Monday) to start. She had an MRI but the result weren't exactly what we were looking for, but thankfully didn't completely disappoint us. The MRI still shows changes, but the doctor is still unsure on whether the changes are cancer related or due to swelling from radiation and healing. We will have to wait until her MRI in January to be able to compare that scan to the previous ones to know exactly what we are looking at. We are kinda happy that our holidays will not be disturbed by another stressful appointment.

So .... Today I picked up a very expensive (thank god for insurance) bag of chemo therapy in Tampa and delivered it to her around dinner time. I drove across the bridge with the bag in my passenger seat knowing that the only hope we had to hold on to was in that bag. I can't describe to you how I felt bringing it to her. So many emotions. At the end of the day, we are happy that no matter the dosage, the delay or what the scan looks like, Mom was finally able to start chemo again. This makes all of us happy and gives the hope we have been looking for.

Another blessing ... Mom and Jim are staying with Grandma for a week or two, while work is being done on the villa. This will also be helpful to make sure Mom has someone with her during the day while Jim is work. GG is in over drive making sure Mom has everything she needs, that Jim has dinner on the table and that Bailey gets all the walks she needs. She is such a "Giving Tree".

Standing still .... Again.

For the past three weeks we have been going back and forth to doc appts to find out if Mom's platelet counts were high enough to receive Chemo. Well today's appointment was the same as the last three weeks. Mom once again did not get the approval to start taking the next round of Chemo. Her counts were only 95k and needed to be at the least 100k. We will not lie to you .... this has been highly disappointing for us. The spirits across the entire family have been up and down. We are thankful though that all signs point to her getting chemo next week. We also look forward to meeting with the doctor at her next appointment to see if there is an alternative protocol Mom can pursue since her body doesn't seem to want to recover from the current type of chemo. We will also discuss what the delay in treatments means to her treatment plan as a whole. Please keep praying and sending positive thoughts our way. We need them. I will re-post after our appointment next week.

On a brighter note .... Mom has been feeling well and had been getting out of the house. We have been enjoying Sunday dinners at Katie and Patrick's house, Chase and Owen's football games, Miles for Hope Benefit Walk, shopping, dinners out, birthday parties and last but surely not least Epcot! Mom, Jim, Katie and Patrick went to Epcot last weekend for the Food and Wine Festival. Mom had a blast. She was so happy to be there and enjoy the park like the ole days. The only difference this time was that it was from a wheelchair. She allowed the family to push her in a wheelchair to help her preserve her energy for the entire day. The four of them came home from the trip and crashed. They were all tired! I have put pictures below of some of the things we have been doing over the past month. Enjoy! Note: Mom's cheeks are puffy from the steriods. She has to take the steriods to help her recover from surgery and radiation. She hates her cheeks, but we insist she is the cutest little puffer fish we have ever seen. ;)