Thanksgiving/MRI Results

Thanksgiving came and went. We had a lovely holiday that I know we will all remember.

Wednesday afternoon Steve, Jenelle and Mr. Mayhem came down to celebrate a Mexigiving. We had a delicious mexican feast washed down with some of Steve's original margaritas.

Mom, Steve,
Jenelle, Bethany and
Mr. Mayhem
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Monica, Tanya, Cheryl
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The day was lovely. Monica flew in to spend Thanksgiving with us and see her mother who has been here for a long time helping to take care of my mother.

Jenelle left later that evening and took Mr. Mayhem to see his other grandparents. Steve stayed down in San Diego and we all headed to Roberta's for a beautiful Thanksgiving there. The weather was amazing, the food was fabulous and we all truly enjoyed being with one another. Roberta's brother Rich joined us and Bobby flew in to spend the holidays at home as well. The McDevitts stopped by for some fine wine and dessert as well.

 Mom got all dressed up and looked amazing. Though the Notre Dame Irish hat didn't match her outfit it was a gift from Bobby that she wanted to wear. It also was a big weekend for the fighting Irish and she had to show her support.

Steve and I on Thanksgiving day.













The Williams Family together.

Roberta's beautiful table!








Shortly after the Holiday was over we got ready for Christmas. Steve and I got most of the boxes out and began to decorate for Christmas. For those of you who are normally at our house during the holidays' you understand that our house typically "throws up Christmas". With my moms 500+ Department 56 homes, our indoor AND outdoor Christmas trees and our larger than life stalkings, our house it quickly transformed into the north pole. This year we maintained both trees. (Jenny Caughey even dried the fruit and got the cinnamon sticks to hang on the outdoor "nature" tree). We only put up 50 of the houses but we still hung the stalkings by the fireplace. The house looks like Christmas. We still have poinsettias all around us. It just wouldn't be Christmas with out my dad represented everywhere. They are beautiful and it makes us miss him even more.

Because we switched to hospice after she finished treatment, the MRI was not an insurance paid/scheduled routine. How could we go without it though? We scheduled it anyways and went in this week. After 6 weeks of INTENSE treatment we have the results. They did 7 days a week of chemo, the chemo drip once a week that knocked her out and 5 days a week of radiation to the head. They pulled out all the bells and whistles. They went in guns blazing...and...they held the tumor off. It didn't grow. In fact, the height of the tumor shrunk from 4. 7 mm to 4.5 mm. The diameter, width and depth of the tumor stayed the same. It''s definitely not a miracle but it's a blessing to us. We got more time. She gave us more time. She fought to let us have the time to say goodbye and we are grateful to her for that. It was rough on her, she was weak and miserable, but she did it because she loves all of us. And we love her for doing it.

We are going to enjoy the holidays together ( I will put up picks) and enjoy every day that we have. The tumor is aggressive and it will continue to grow...but we have been blessed abundantly so far. She is herself again (now that the chemo is out of her system). She wants to enjoy her time and wants to spend it with all of us.

The days are tough...the nights are tough...the emotions are high. Her logic and reasoning is not there and I have to constantly work through her social schedule to correct the things that just don't work..my frustrations are few and the joys are high. She amazes me every day with her strength. She never complains about anything!!!! She truly handles this all with grace.

We are thankful for each day and for all of you who walk this path with us!

It's been a while....

After much grief from several family members and friends I am giving in and writing another blog. I apologize for the long delay...there has been so much going on. It seems like just when things settle down with her I have to work extra hard at work to catch up on things that I have missed. Anyways...we're back and I'll try to stay on top of it more.

We are still home. The hospital bed has been amazing is allowing us to be comfortable. She's close to everyone and everything and doesn't have too far to move.

Our mobility has become very limited. The thigh muscles are the first to go so we are unable to get her up and down any steps. This has limited us only to the downstairs half of the house. Unfortunately we only have a half bathroom downstairs. So...our friend Dell helped us put up an outdoor shower in the backyard. This has been a huge blessing for us. The instant water heater tank helps us to keep her warm and lets us use any outdoor water source. It's a pretty cool setup.

On October 18th (the 2 year anniversary of my dad's death- from a blood clot in his left leg) the doctors discovered 2 blood clots in my moms left leg. The pharmacy that we were going to had made a huge error and given my mother a medication that was not meant for her- written by a random doctor for another random patient. The side effects of this medication were of course swelling in her feet and ankles. Though they can't guarantee that those pills caused her blood cots, they also can't say that they didn't. This was another stress that was just not needed.

Lovonox shots and cummadin were given to her to help thin her blood. These shots, for those of you who are not familiar, are very strong and very painful. They are darted into the skin and leave huge marks on her skin. We had just finished our first round when we had to go back to the ER. The swealing just would not go down. Another round of shots it was. Things seem to be getting better but we are still waiting.

We are coming up on our 2 week anniversary of being off treatment. We're waiting for our hospice evaluation (hopefully soon). She's been able to decrease her medications from about 22 pills to around 12. We are also no longer diabetic. With the steroids and the chemo pills out of her system her blood sugar has become regulated again. Not having the 5 shots a day has made her feel less like a push pin.

We laugh at some of the child like symptoms that she has developed (or regressed to). She sings a song "Where does the wind come from? Does anybody know?". She has an obsession with buttons. She deletes EVERYTHING. From the contacts in her phone, to the text messages. The address book in her car or the shows recorded on the DVR. If you are texting and we ask you "who is this?" please don't be offended. She has just deleted your information from her phone.

I will not lie. She is fading pretty quickly. Some days are better than others. We love every minute where we see her shine through. I wish I could say differently. But...we are thankful for the moments, pray for more and keep asking God to grant us strength and guidance.

I promise that the next blog will come sooner than later. Thanks for the love <3

1/2 Way Through

1/2 Way Through......

We've made it half way through treatment. It seems like yesterday that we first walked in the doors of Dr. KoKa's office in the 447 building. The 6 week process of aggressive radiation and chemo has gone so quickly.

There have been so many ups and downs on this journey. Last week we were back in the hospital for another 5 day stay ready to be released to a nursing home. Thankfully her symptoms were somewhat relieved and she had a few good days near the end of the stay and we were able to detour her back to the house before the nursing home. We're still here! She's doing alright. We're still having our ups and downs. She still has her good days and bad days. Her symptoms go away and return on a daily basis but she's powering through them.

Her face is swollen. We tell her how adorable she looks. The doctors call it steroid swelling and have told us how common it is. She hates it. Mark Liggit is an angel and came over last night to shave my moms head. She's much colder now than she was before.

I thought I'd throw some pictures in for all of you!

 In the hospital when she first was diagnosed with the diabetes.

Mom when we first brought the hospital bed home

With her angel Tanya who has been taking care of her 24/7 and is AMAZING!

 

 Tanya and Jenny on my moms favorite day of the week "Jenny Day". Playing games to help keep my moms mind working! (Jenny is an angel!)

Her first hair cut by Peggy (when her hair first began to fall out)

With Mark Liggit who came and helped her out with her hair!

Megan and I who got to sneak away for an hour and have a glass of wine. This woman has been my best friend for the past 25 years and has been my rock the last two. Don't know what I'd do without her.

 At lunch with Paula (my dad's cousin/almost sister) who came to spend the weekend with us.

I'll try to keep updating and adding more photos. Thanks for all the love and support!

(Soon to follow will be what Steve and I call the cane chronicles)!

Pray that we can continue to have more good days than bad.

Much love,

Bethany

The Journey Continues...

Over the past week, we began to notice that my mom's memory was starting to get worse. Her confusion continued to increase. On Thursday night, we went to a special dinner to celebrate my parents 32nd wedding anniversary with a few close friends. It was a special occasion that we wanted to share together one last time. However, after the appetizers, my mom had a brain seizure, which immobilized her from the waist down.

This turn of events led us back to Scripps Encinitas where the doctors in the E.R. ran tests and took more scans, only to discover that the steroids that were keeping her symptoms at bay were no longer working. The tumor hadn't grown much, but because the steroids that were keep her highly functional were not effective, her symptoms were back and worse than before. In addition to this, the combination of these steroids and chemotherapy had taken their toll on her and made her diabetic. Her sugar levels were extremely high, and we have switched over to a diabetic diet. She was admitted into her own room on Friday and will stay there until tomorrow to give the doctors a chance to lower  her levels and give us some time to consider options.

The combination of steroids, chemotherapy and radiation have done their job to slow down the tumor, but have done greater damage on my mom's body than we expected. We have made the decision to do what is best to give her a high quality of life for the time she has left.

After talking with her treatment doctors and our mom, Stephen and I have decided to do the following: Mom will stay in the hospital until tomorrow, at which point she will be transferred to a nursing home for rehabilitation and physical therapy. We are still discussing with doctors what treatments we should continue and will hopefully know more within the next few days. We anticipate that she will be in the facility for at least a week, and then we will be bringing her home.

For those of you who have signed up to bring meals and drive my mom to and from radiation appointments, know how appreciative we are. We will pause rides for the near future, and may resume them once she is home if treatment is still part of the plan.

Stephen and I know that this part of our mom's journey may prove to be the hardest, but we are listening to her wishes and are going to chose what's best for her. Thank you for your continued support and prayers. We love and thank you all.

Let's Get This Started

Life went on as close to normal as possible after we arrived home. People stopped by on a continuous basis and the phone continued to ring off the hook. We had a brisket night here at the house with a few close friends and enjoyed a few glasses of wine while she could still drink! We met with Dr. Staci Lin (our primary care physician) as well as several home health care physicians who came in  to help take care of my mother.

Her personality was back in full swing. Thanks to many steroids she was able to maintain a healthy appetite but was unfortunately unable to sleep most of the time. My cousin Tanya stayed home and took great care of my mother and allowed me to go back to work! I worked for an entire week straight and felt so confident leaving her at home in such good hands. Good friends also helped this week with taking her to and from doctors appointments and getting the house more set!

Radiation was ready to begin. We made an appointment for Tuesday September 11, 2012 at 2:15pm. Jenny Caughey accompanied her to Dr. Koka's office for her very first treatment. The first session was a breeze. Cheryl practically fell asleep in the comfortable chair. Not much to do but sit there with a mask and allow the radiation to do its work. The mask is large and white. It's a direct outline of her face. They use this to hold her in place during the treatment and it is marked up like a map to help ensure that the lasers go exactly where they are supposed to! All seemed well on the radiation front but we still hadn't heard from chemo.

After several calls to the office we were beginning to become impatient. How can you tell us that we only have a few weeks with our mother and then not rush to begin treatment. We were on day 10 and still were unable to get in touch with Dr. McClay. Thank God for Jenny!!!! She marched right up to the oncologist office and helped get the ball rolling. We began radiation pills that day! The drip was scheduled for Thursday September 13, 2012 and the Temador was on rushed delivery to our home. By Friday night we had almost all of the medications and the treatments were all beginning to become manageable.

Cheryl reacted quite well to the first few doses. She wasn't too tired nor too sick. Her very close friend Peggy decided that we should get together to celebrate her life while she was still feeling well. So on Saturday September 15th we had a lovely luncheon at her home. Some of my mom's closest friends attended and we had a wonderful afternoon together! We all dressed up, took pictures with her and enjoyed an afternoon together!

My good friend Anna came down to see her for the weekend as well as my good friend Nick. They were both put to good use. Nick was in charge of fighting the ant invasion in our home and helping set up things that my mom needed in the house. Anna is a nurse and was able to help me organize all of my mothers medications! I consider myself to be a very capable woman but when it comes to organizing 12 different medications as well as her chemotherapy drugs I get a little overwhelmed. Some are taken twice a day, once a day or three times a day. Some are mixed together to create dosages that are needed. Some should be taken with food while others should be taken on an empty stomach. Some make her drowsy and some should be taken to help with nausea and other things prior to her chemo pills. It's a jumbled mess that I tend to stress out about. I make other eyes watch me as I fill her pill containers and count and sort each pill! Thank God she was here to help me figure them all out!

Today is not the best of days. She has slept almost all day! The large doses of medications are making her confused. We try not to laugh at the things that come out of her mouth but then again, she would want us to! She's hanging in there and fighting the fight. With all of her amazing friends we seem to be doing alright. For those of you who are dropping off dinners, helping us with phone calls, picking up perscriptions, ect. we are so thankful! We have the most amazing friends in the world and without all of you we couldn't get through this! You all know who you are...THANK YOU!

(Again, I don't always have time to call back or text back but I am still grateful for all the love and support)

***Update: My mom's doctors have asked that, due to her immune system, she shouldn't be around anyone who is sick or might be getting sick, or who has recently recently received a flu shot. Thank you!

Home Sweet Home (post 5)

After 5 days in the hospital we were finally home. The comfort of our own beds was a pleasure compared to the hospital beds we had been sleeping in for days. We were no longer awaken by the beeps and buzzes of the hospital machines. We couldn’t hear the voices of nurses doctors roaming about the unit. She was speeding through our hallways, walking up and down the stairs and laughing. The home was filled love and prayers. We were thankful for the ability to be together in the home we had spent the last 27 years together in.
The doctors appointments continued to role around. We got her radiation mask made, her heart checked out and her drugs organized for weeks. The doctors continued to cal and the visitors continued to come. Our lives began to reflect that of what it was the week before.
Dell, Pete and Rich were on top of the house; searching for ways to make it more accessible for her. Jenny and Roberta were cleaning, sorting and sanitizing the house. The love and support of those in our lives continued to remain evident.
Steve and Jenelle returned to work and on Thursday night I did as well. How blessed I feel to be supported by such an amazing school family and staff. I spent today with 22 amazing 2nd graders and am feeling blessed minute by minute.
Dr. Yoo called today and informed us of the pathology reports. The brain cancer is in fact GBM stage 4. We are thankful for whatever time we have left with such an amazing woman. We are hoping for a year, praying for the holidays and treasuring every moment that we still have. The journey will continue and so will this blog.
I’d like to say that I’ve returned all the phone calls on my cell phone, all the texts and e-mails I’ve received, but I can’t. Know that you are all loved and cared for. We are grateful for your constant support and are hoping that this blog will help you to understand all that has gone on. I will work hard to keep you updated on all that is going on and ask that you be patient with me as I try to inform all of you as to what is happening.

There's a Hole In My Head....(post 4)

Anesthetics can make for funny times. Who would have thought “there’s a hole in my head” would be a statement to laugh about. However, in my mother’s post-surgery condition we couldn’t help but laugh. 

She awoke in her new ICU room. Her head wrapped, fresh gown on and new hair-do ready for pics. She spoke, stood, ate and laughed. It was the first time she had been herself in weeks. The steroids began to work….we could see an immediate change. She took several steps that day and by the end was brought back into her PCU unit.
Sunny, our favorite nurse was ready to greet her upon arrival. Her personality matches her name and her love for her profession was infectious. God truly picked her specifically for us and we are still grateful to this day for her! She closed her eyes as we filled the room, ignored our loud and boisterous personalities. She cared for, loved for and prayed for us.
Dr. Koka was a breath of fresh air as she walked through the hospital room door. She arrived at the same time as my mothers parents and our dear friend Scott Russ. I got a few private moments to discuss with her my moms condition and how she could help us fight it. Her honest and caring opinion was so greatly appreciated. She gave us hope that we could have more time yet never gave us a sense of false reality. She has been the stable and loving Dr. whom we had been praying to have.
Things began to look up and we felt that perhaps we could have some more time. And for the first time in days we sighed a sigh of relief.

Which Path Do We Take? (post 3)

Dr. Yoo opened the visitation room door. He glanced at me and then my brother and signaled for us to move into a more private room. The doors closed and we were once more faced with decisions. What had once seemed like the best opportunity for my mother no longer seemed to be so. He gave us his honest and professional opinions about the type of cancer she had, the consequences of each of the choices he presented us and a short amount of time to come to a conclusion. We could a) continue with the procedure and risk losing her memory, ability to think and make decisions b) take her home and make her comfortable or c) biopsy the tissue with a less invasive procedure and then make our final decision. With the procedure only 2 hours away my brother and I quickly discussed what was to date the hardest decision we have ever made. Should we try to save a life we love and risk losing that which makes her unique in the process or take her home, make her comfortable and live out a shorter amount of time together. At this point we consulted with Pat and Jenny Caughey to ensure that we all came to the same conclusion.

The decision was unanimous….the quality of our mothers life was and is so much more important that the time we get to spend with her. We agreed that we would biopsy the tissue. Within a few hours our Uncle Richard was there and we walked hand in hand to our mother’s room. Making the decision seemed so easy compared to telling our mother she was dying. We stayed strong and God flowed through our words as we told her the severity of the situation and the decision we made. The strength of our family has been tested so much and in each of these situations we can only see it bond even more closely together.
Next was the family and friends gathered in the waiting room. We were encouraged by their love and support. How blessed we are to be surrounded by so many amazing people who we are able to rely on time after time.
The biopsy was done…all were ready for sleep….though non of us did. And the waiting game began.

Dr. You Who? (post 2)

The next phone call we got was from Dr. Yoo (you). “Hello is this Bethany?” he said. “Yes” I replied. “I’m Dr. Yoo, the neurosurgeon, I’m with your mother I need you to come”. “Should I come alone?” “Yes, come alone and come now”. I ran through the hospital trying to find the PCU unit that he and my mother were in.  There are many great things I could say about Dr. Yoo but his bedside manner is definitely not his strong suite. Within a matter of 10 minutes of meeting this neurosurgeon I was informed that my mother did indeed have brain cancer and that I’d be lucky if she made it a year. My heart sank and brought me back almost 2 years when my boyfriend at the time walked into our house and told me that my father had just passed.

I guess looking back there is no good way of delivering the news, but at the same time you just don’t want to hear it so abruptly. Dr. Yoo was not done however. He discussed with us the procedure that he thought we should take on. It would consist of taking out the 80% of her brain tumor and leaving the 20% that he felt was inoperable. He suggested treating the remaining 20% and hoping that with treatment we could postpone her life for a few more months.
Jenny, Megan, Donna and Linda, who were waiting in the waiting room throughout the day, made their way back looking for my mom. Linda and Donna went into see her while Dr. Yoo explained the situation to Jenny and Megan. Soon after family and friends started arriving. We huddled closely in the open PCU room and shut the door in order to keep the information quiet from my mother. Eventually I did her her about the tumor, but we waited until we knew more information before she knew the severity. We waited for Steve and Jenelle to come home and for the process of saving my mothers life began.
A few hours later they were here. It was a strange position to be in. 2 years ago I was in Ohio and everyone in my family but me knew that my father had died. They let Pat know so that he could come home and be with me when I found out. Those few hours they waited knowing that I was so unaware of what had happened. This time I was on the other side, hating that my brother was so uninformed. Shortly after he knew, and the family phone calls began. I watched my mom sleep that night, holding her hand, hoping that I would wake up and find this to be just a dream that could be forgotten.
When I awoke the visiting room was full….full of those who we love and whom love us. We rotated in and out. Others sat with my mom and allowed Steve and I to begin the phone calls that we so dearly dreaded to make. Everything was set in motion. Msgr. Duncanson came and gave the anointing of the sick, we gathered around and prayed for the safety of our loved one. We prayed for steady hands and patient minds of those who would be in the operating room.
But the course that we were so ready to embark on was quickly detoured….

Something Just Seems Wrong (post 1)

How we discovered that we were fighting the fight against brain cancer.

My mother is normally witty and sharp, snarky and loveable. She is engaged and loving and always putting those around her before herself. But over the past few weeks something has just seemed off. Her normal behaviors have gone array, her typical warm and engaging personality has been overturned and her ability to function in normal daily life has diminished.
Dr. Lyn (her primary doctor) knew something was really wrong when my mother was a) willing to go to the doctor and b) willing to see the doctor on call while Dr. Lyn was away. Thankfully through the support and constant push of those who love her, she went. Nothing seemed to be wrong. Her blood work was normal, her tests came back clear and the doctor couldn’t figure it out. They decided to let her go. As she walked out of the doctors office she grew faint and passed out in the hallway. This is what began the 5 day stay at Scripps Memorial Hospital.
I drove to meet my mother and her friend Linda at the doctor’s office. We drove her over to Scripps and were brought into the ER for further review. Her blood seemed normal there. Her heart was having some slight palpitations but nothing too extreme. Nothing seemed to be adding up. The doctors were concerned but didn’t know what to think of the symptoms so they ordered a CT scan to see if perhaps she had had a stroke at some point throughout the past few months. What they found instead was a mass.