Happy Birthday……

Today is a very special day! It’s bitter-sweet but Emma would have been so very excited today!

Today is Emma’s best friend’s birthday. Lexi is 19 today.

I remember when Emma went to Lexi’s 16th birthday party. She was so excited and wanted to choose the perfect gift for her friend. I remember she gave Lexi a hot pink iPod nano and an iTunes gift card for music.

It was a sleepover party and I remember after I picked her up she was telling me all about it on the drive home.

“They’re AWESOME!, they’re just like us, totally crazy in a good way!”

Emma loved Lexi’s family immediately as much as she loved her friend.

So today, even though Emma isn’t here to help her celebrate this special day, we celebrate Lexi and the beautiful friendship she and Emma had!

Happy Birthday sweetheart, you will always be an important part of our lives.

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Photo of Lexi & Emma – 2013

Author: Catherine ~ Emma’s Mom

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The Last, Best Day…..

There are some beliefs that say nothing happens by chance. That there is reason or design in everything that happens.

It happened that Emma got up the morning of April 15th, 2014 and dressed in her new Old Navy outfit. We had been shopping & to dinner at her favorite Mexican restaurant the evening before. We were in Memphis, TN., at St. Jude for radiation therapy treatment.
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We had an appointment early the next morning and then some down time.
The next morning we saw a posted announcement about a screening of Rio 2 for patients and their families. And a BIG surprise!
We had enough time to go to the screening and still make our afternoon appointment. So we grabbed a quick lunch and headed up to the auditorium. We got lost along the way but finally found it. I guess we should have known something was up when we had to sign a release form before going in.
There were tropical decorations, soft lighting and tables of treats & snacks. Everyone was lined up so we took our place in line & waited……
We got to meet the most beautiful & sweet person that day.
Annie, as she called herself was friendly and charming. It was such a great treat to meet her! She & Emma chatted a few minutes and had their picture taken together. After she visited with each patent she introduced the film and we saw the movie!
It was Emma’s ‘Last Best Day’!
That evening she went & hung out with a new friend and finally went to bed tired but happy. Who would have guessed she would get to meet a movie star?! And have her picture taken with her?!
The next morning Emma’s hair started falling out from the radiation therapy.
Anne Hathaway is not just a pretty face or talented artist, she’s a tiny body with a huge heart.
I recently watched Interstellar & One Song. I’m impressed by her acting ability and scope.
(While I would love to share Emma’s photos with Annie, I cannot. They were given to us for personal use only. But you all know her face, it shines with an inner beauty that comes from a big heart!)
I hope you’ll remember when you see her in a film, that she’s not just a movie star. And that she was the light & joy of HOPE one special day!
The last best day…..

On to August….

And things get real. Do you remember some of the most poignant moments in your life? Did you feel a sense of urgency? Anticipation? Euphoria?  Possibly dread?

August started with making the decision for Emma to start her senior year as a homebound student. She was able to do about 4 or 5 hours a day of regular activities but she was easily tired out. She was invigorated by her schoolwork and looked forward to the new classes. We got her enrolled and set up for the homebound process.

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Her older sister, Claressa, decided to stay home from college to help out and spend time with Emma. Claressa helped with Emma’s dietary changes. We juiced everyday, tried new recipes without sugar, salt, and low gluten. We tried a battalion of vitamins and other supplements.

Looking back I realize I was in denial. In my mind I was thinking if we could keep Emma healthy we could get to her 18th birthday in December and then she would be eligible for adult treatments. I had started researching different trials for adults. If we could just make it to December……

The last week of August was busy. Family and friends came to visit Emma. She was tiring easily but still wanted to see everyone. We had some wonderful times. She was able to see friends she hadn’t seen in a long time. And spend time with her best friend chatting and having her nails painted a beautiful leaf green.

She spent several nights in bed with me. For some reason 2-3 am was her best time. She was awake and alert. We had some wonderful chats in these small hours. We talked about how much she loved her friends and other ‘normal’ things.

We never talked about death and dying. From the beginning of her journey into the shadow of death we never talked very much about death. Emma loved fairytale endings. She used to rant on passionately about how she had no time for ‘real-life’ stories or movies. She said, ‘I have enough real life for two lifetimes, I don’t want to read about it or watch it’.

So we spent the last week in August with a dwindling number of waking hours. Emma spent most of her time in softie clothes or PJ’s. Fortunately we had an AMAZING  team of hospice workers who visited regularly and helped us with the small details of the struggle.

Tuesday night was the last time we got to talk with Emma. She had supper in bed around 9pm of brown rice and veggies but didn’t eat much. I came in to wake her to take her meds about 11 or 12 but couldn’t get her to open her eyes or take the meds. I was worried but figured I’d let her sleep and come back later. She was in pain enough that it was bad to skip her meds. She was not responsive after that last med time.

The next few days were purely hellish for all of us. We were in an uncharted land. Without the help of our dedicated hospice nurses we wouldn’t have been able to make it. We sat with Emma, held her hand, played music for her, talked to her, prayed with her and for her. We told her all the things we wanted to say, and finally we said goodbye and told her it was ok to go.

And we held each other, we cried….. for the terrible loss, but more than anything for the injustice of a life cut short in its prime.

Our beautiful Sunshine girl. The perpetual innocent, sweet, funny girl, was gone.

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It has been five months since she left. I still have days when I can’t believe she’s not with us in this space. That I can’t hug her, kiss her, and hear her laughter.

How did this happen? Why did she have to die and not someone else? Useless questions…..

All I have to say now, I was blessed! Truly blessed to be her mother for those beautiful 17 years! And if it is possible, there will be a day, a beautiful day….when I will hold her in my arms again.

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Thank you! To all our AMAZING support team. Those who love us so much and continue to stand by us!

Rewind….to July. Summer vacation.

Have you ever wished to have a time machine? Just to go back to one moment in time? To say one word differently? To kiss instead of fight? To hug instead of cry?

Of course we all do. We wish for it sometimes with such fervency it makes us feel sick. Regrets? Sure, I have quite a few. But that’s part of the human experience isn’t it?!

Well, here’s the time machine experience for just a moment…..

Let’s go back……July 2014. It was not the best of times, but it was a lovely family vacation in Helen, Ga. The summer heat was typical for the South but it was pleasant in the north Georgia mountains. Emma had a good time playing miniature golf, shopping, relaxing on the porch with grandpa and playing pool with her brother and sister. The little kids had a blast tubing down the river, soaking in the hot tub, and sleeping in a new place.

We had some delicious food, both homemade and at the local restaurants. The week went by too fast.

It is still an idyllic memory. Summer fun in the mountains.

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Loyalty of the Soldier

“Where the battle rages, there the loyalty of the soldier is proved.”
― Martin Luther

Sometimes even soldiers falter before the foe, but are rallied by their comrades. Our comrades in this battle are Heroes and Warriors beside us.

Emma is the strongest of warriors and a real hero in this battle. Some days are hard to get through, there are headaches, dizziness, loss of motor function, and fatigue.
But there are good days also, days with less pain. Some days spent with family & friends, with happiness and laughter.

Reluctant to post….

Again I find myself reluctant to post, why you ask? Difficult decisions have had to be made that required much discussion, thought, research and personal evaluation. It isn’t easy to step outside our safe circle and share our struggles sometimes.
We returned to Memphis and St. Jude Children’s Research Hospital June 18th to have preliminary tests that would lead into participating in a phase one Chemotherapy trial for Emma. All the tests went well, EKG/ECHO looked good, blood work was good.
The MRI showed a reduction of the largest tumor mass (evidentially from the radiation therapy in April) and that was encouraging. However, there are several new growth areas and while small they are spreading further away from the original tumor site. We were prepared for this information, but preparation never makes the knowing any easier.
After talking with Emma’s Doctor’s, carefully going over the phase one protocol, and discussing the possible benefits and disadvantages with our family we made the decision not to participate in the trial.
This may seem like a foolish decision and we understand that some will not agree, however we ask for your continued support never the less. In an effort to help you understand our decision and bring you with us on our journey let me explain……
Medical trials have four phases. The first phase being the first time the drug or drugs are tested on human subjects. Jump to the fourth phase when the drug has been through many tests and human test subjects and is ready for FDA approval and general use.
We felt that because this trial was a phase one trial with no known benefits to the cancer Emma has and because there was only one other human participating in the trial there was very little chance of benefit or tumor reduction, or even cancer cell growth cessation.
Our other choice of action was something with viable and proven results. Juicing. There are hundreds of testimonials from cancer survivors who have made the choice to try the juicing lifestyle and seen positive results.
So, we thought since we have a juicer at home, could be at home with our family and friends we’d try the Juicing diet. Emma made the final decision without pressure or coercion. We came home June 24th. I am proud to tell you that Emma has been juicing faithfully every day since we returned home. She does eat solid foods as well. She has cut out all refined sugar or products with sugar, all meat and dairy products, and is eating a vegetarian/vegan diet full of whole grains, legumes, fresh vegetables and fruit to supplement her juicing.

Emma's red bowl gets filled every day with a variety of fruits and veggies for juicing.
Emma’s red bowl gets filled every day with a variety of fruits and veggies for juicing.

Her doctor reduced her steroids before we left St. Jude and she has tolerated the lower dose very well. Her joint pain is gone completely; she is much better natured and feels better than she has in a long time. She is sleeping better but still wakes more than she would like. We’re working on that!
We are currently pursuing a position for Emma in the Uchee Pines Lifestyle Center in their 17 day Health Program.
Emma will be 18 in December and at that time we will revisit traditional medical treatment options available in the adult arena. Between now and then we will continue to be in touch with her medical professionals at St. Jude and have regular checkups as necessary.
Thank you all for your love, support, prayers, and positive energy. There are many times we don’t know what is coming next, but we know you are there beside us!
Please look in our Links section for links to Uchee Pines, our favorite Vegetarian/Vegan cooking blog -suggested by my lovely sister-in-law Dre, and a link for some amazing juicing recipes we recommend you try! Juicing is for everyone!!

Staying Positive is a Work of Heart

 

As a mother, life-coach, and the motivational director of my family I try to stay positive. However, we all know that there are times and situations that suck all the POSITIVE out of our sails and leave us gasping like fish on the sand for hope.

At times like these I tend to just get quiet, to go inside myself and try to find my center. During these times I hold close to my family and loved ones. So please forgive my absence and understand the last months have not been easy or pretty. And it is hard for me to share ‘hard and ugly’ with you.

Emma has had a hard time recuperating from radiation. She has had to be extremely careful not to become overheated or overexposed to sunlight. This alone has been difficult as we came home to the beginning of summer which is both bright and hot. So she has spent much of her time indoors during the daylight hours.

She has been able to take walks in the evenings when the heat recedes and the sun has gone down. She has experienced joint weakness and pain from the steroids which make daily activities difficult and challenging. The steroids have also caused her to be grumpy and irritable which is not her normal sweet nature. We understand this is the steroids and not our girl. And the most distressing side effect from the steroids, weight-gain and water retention is most upsetting for her.  

But we have definitely enjoyed being home. Claressa, came home from a year abroad in Italy and we’ve had some wonderful times spent having cookouts, movie nights, and just hanging out reconnecting with family and friends.

As our time home comes to an end and we begin packing to return to Memphis and St. Jude Children’s Research Hospital for four weeks of chemotherapy trial we are reminded of just how blessed we are.

We have not completed all of the things we had on our ‘To Do’ Lists however we go again and look forward to coming home at the end of July and going on a family vacation to the north Georgia Mountains together and reconnecting again after another absence.

It isn’t easy to be gone away from home for so long, to have to eat in a cafeteria, to sleep in a strange bed, to be without the creature comforts of home. But we know we can do it, we know because we’ve done it before and because we have drawn on your love and support to help us make it through the hard parts.

Thank you for your continued support! Your prayers, your love, all the positive energy, and words of encouragement – they all help buoy us up when we are low.

With hearts Hopeful we again set out on this Journey, to Fight the fight with Courage, Strength, and Dignity.

Thank you for being part of our Journey,

Catherine, Emma, and Family

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Remembering to Breathe In….

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First we want to say a Heartfelt Thank You to the Fantastic supporters of our Team Emma booster. There are four days left and You have purchased 38 T-shirts! You are our Heros! https://www.booster.com/teamemma-greymatters

Breathe in….breathe out. Have you ever had to remind yourself to breathe? We’ve had a week like that. And we are just now coming up for air.

We raced out of Memphis late last Thursday afternoon heading home for Prom weekend, flew through a fun, fabulous, and emotionally high weekend. Then we raced back to Memphis on Sunday afternoon to be here for radiation treatment on Monday. We got home after midnight last Thursday and fell into our beds with much relief. Friday morning I got to make breakfast for Nick and Raven before they went to school and had a chance to catch up with them and find out how they had been doing. It was great to see my kiddos! And Em got to sleep in a bit. Then Friday was spent getting ready for Prom; picking up flowers and then having a special spa treat to get a manicure and pedicure (thank you special loved ones!). Followed by dinner with dad and then hanging out with friends. Saturday was busy with hair appointments, getting ready at dad’s, pre-prom dinner at a Mexican cantina and then pictures on the Columbus, GA. Riverwalk before Prom. Emma went with Logan Mazanak to their Junior Prom, for Smith Station High School (AL). Everyone had a wonderful time at the Great Gatsby themed event.

Emma had been having some hair loss at the radiation site for a few days before Prom. Sunday morning after Prom it was just too obvious and too much lost to keep the rest without looking funny so her dad came over and buzzed it all off. Good-bye hair…..again. Emma doesn’t really mind and she knew it would come to this. She was just glad her hair hung on for Prom. Her super sweet BFF Lexi buzzed her head again as well. Shout out to Lexi – Love you!

So we got back to Memphis late Sunday night and got into a room at a local hotel, the Grizzlie House was all booked. Just as we went to bed a huge storm came in with wild wind, driving rain, thunder and lightning. We started back with treatments on Monday and also moved into the Ronald McDonald House across the street from St. Jude Children’s Research Hospital. We have a nice room, laundry facility, common kitchen and dining room to share with other families. We went to get groceries that we keep in our own space in a huge shared refrigerator downstairs.

Now we have a minute to breathe, we hope to go to the zoo tomorrow morning with some friends and enjoy the warming weather. It has been stressful, crazy, and up and down but we are never alone with you there for us. And we can see the End-of-Treatment coming soon. April 22 will be Emma’s last radiation day then we’ll have a few more days and can go home for a bit before heading back for four weeks of chemotherapy. Love and Hugs

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13: Thirteen T-shirts sold in our Team Emma Booster so far!

102: Our one hundred and second blog post.

12: Twelve days of radiation treatment left.

11: Eleven pills a day.

58: Fifty-eight days until Claressa comes home from Italy.

2: Relaxing days spent together.

Hurray and Hugs to our Team Emma supporters!

We’re thrilled that 13 Team Emma T-shirts have sold so far. What wonderful supporters and team Warriors we have! Thank you all! You can find the link under the ‘links’ section to the right or go to: https://www.booster.com/teamemma-greymatters

We were happy to see the weekend come! The end of the week and the end of radiation until Monday. There were crafts to help entertain the kids and we enjoyed some relaxation when the weather got cold and wintery outside.

Since Emma has been taking the steroids she has not had any severe headaches, only a few mild ones that are usually resolved by taking a nap or eating a meal. She is in good spirits and the radiation treatments only last about 20-25 minutes.

How does radiation for Emma work? I am sure many of you wonder about this and that is very normal. I had no idea how the process went until I got the tour either. Emma lies on a rather narrow table that can be raised or lowered. This table has wide bands to hold her in place that go across her shoulders, stomach and knees, they also help to keep her as still as possible. She has a custom made plastic mesh ‘mask’ that covers her face and bolts to the table during radiation. This ensures as little movement as possible. The radiation machine rotates around her head as needed in the pattern predetermined by the radiology team it is a huge arm with a truncated cone at the end. This arm can rotate a full 360 degrees around Emma if necessary for treatment. The room is big, white and blue, light and airy and empty mostly but for the machine and table. The technicians stay in another adjoining room during treatment but monitor the process via video feed. Emma can listen to audio books or her favorite play list as they have an apple doc in the treatment room.

I think she does AMAZINGLY in treatment! Of course I’m a huge fan anyway.

She is experiencing some normal side effects of radiation and gets very tired about an hour after treatment. The fatigue is expected to become a bit more amplified but then even out.

We are taking care to keep her well since she is at risk for a certain kind of pneumonia at this time. She is taking a prescription for that.

We’re also counting down the days until big sister comes home from Italy. We sure have missed her and Emma can’t wait to spend some time with her. We hope she will come back with us for part of the time that Emma is in the Chemotherapy trial this summer.

We send you all our love and thank you for your continued love and support.

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Technical Difficulties, April Fools, and Boosters

We were experiencing some difficulties in emailing and uploading photos from my phone earlier in the week and I was not able to make a blog post. My apologies to our faithful supporters.

We had a quiet and peaceful Friday evening relaxing together as a wild thunderstorm came through the Memphis area. We are so safely insulated here in the Memphis Grizzlies House that we didn’t even realize it was raining until the rain was beating against the window.

Saturday we enjoyed lunch and fellowship with some good friends here in Memphis and David played will their daughter who is the also five. Emma was tired and did have a small headache but felt better after some medication, water, and food.

She’s been missing her family and friends. We all are, it’s not easy to be away from our loved ones.

The weather over the last few days has been beautiful and we enjoyed a visit from a good friend and a trip to the Memphis Zoo.

Emma has radiation every weekday, visits with her primary Neuro-Oncologist and Radiologist once a week each and school appointments. She feels best when she is outside in nature so we try to get outside and have plans to go to local parks and the zoo again.

We did have a Super Fun April Fools Day, radiation treatment went well and we had a nice lunch outside in the sunshine. Then there was a fun ride in a truck sized Radio Flyer and delicious supper hosted by a local eatery.

There are low times, low days, and challenges to get through. But with your love and support we know we have what it takes to FIGHT!

For years now Emma has wanted to create a Brain Cancer Awareness T-Shirt for her friends and family to wear during the month of May (and any other time), since May is Brain Cancer Awareness Month.

So I helped her make that dream a reality. We’re so excited to welcome you to the Team! Please check out our new Team Emma – Grey Matters Booster link. (You can find the Booster link on the right under the Support heading below Blog Roll.)

 

 

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