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!

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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!!

Pain Pills, Scans, and Prom

 

So we have a Plan! Today we had an appointment with Emma’s new primary care Neuro-Oncologist Dr. Broniscer. He is a big, friendly, Brazilian man who has a daughter Emma’s age and keenly relates to her as a young patient.

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Emma received a pharmacy worth of prescriptions to take today: anti-seizure meds, steroids, something for her stomach (some of the meds are harsh on the stomach), and her pain medications for headaches. Although her headaches haven’t been too severe they continue and this is a concern. Emma’s medical team hope to decrease swelling in her brain and of the tumor and subsequent pain by using the steroids rather than the pain meds. Of course the most noticeable side effects of steroids are increased appetite, irritability, and then weight-gain.

In an effort to maintain a healthy weight we will endeavor to continue to keep salt, fried foods, fats and sugars low. Of course our goal is to eat organic/GMO-free foods and while the St. Jude cafeteria has a wonderful selection it is not always possible to do so.

We are staying at the Memphis Grizzilie’s House this week and hope to then move to a longer stay facility such as the Ronald McDonald House or the Target House. In the longer stay housing we will have the ability to cook our own meals.

Tomorrow Emma will again meet  with her primary Radiologist for a final consult before we start radiation therapy and complete one last set of scans before treatment begins on Wednesday, March 26th.

Radiation will be scheduled for every weekday for a period of about 35-45 minutes per session.

And we will be home for Emma to attend her Junior Prom on April 12th, we must get Cinderella to the Ball! (We may have to return the following week to complete treatment if it has not been completed by April 11th). Dr. Kun, Emma’s radiologist has kindly given us Friday, April 11th off for traveling home. Excellent news for sure!

Cancer, Courage, & Changes

Last week we received news no one likes to hear, ‘regrowth’ in multiple areas. Surgery is not an option for Emma this time. However, we do have the option of both radiation & chemotherapy treatments.

There were a few low days, days when we had no options or answers. It was difficult to wait, wait for answers, options, and expert medical opinions.

It is at these low times our hearts seek HOPE. Hope keeps us strong, smiling, and helps us continue on. Hope comes in many forms; hugs, a home cooked meal, and support from friends and strangers alike.

While we are never guaranteed what is in store next on this Journey, we do know that we are not alone. We cling tenaciously to HOPE, Love & our Faith.

We take the next step in this fight as Emma begins radiation treatment at St. Jude Children’s Research Hospital for the next three weeks. We will miss our family & friends at home. We humbly ask for your continued prays for healing.

Together we stand Strong & Joyfully Courageous.

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And So We Begin, Again At The End of Things….

Chapter 12 – Alice’s Evidence
These were the verses the White Rabbit read:–

`They told me you had been to her,
And mentioned me to him:
She gave me a good character,
But said I could not swim.
He sent them word I had not gone
(We know it to be true):
If she should push the matter on,
What would become of you?
I gave her one, they gave him two,
You gave us three or more;
They all returned from him to you,
Though they were mine before.
If I or she should chance to be
Involved in this affair,
He trusts to you to set them free,
Exactly as we were.
My notion was that you had been
(Before she had this fit)
An obstacle that came between
Him, and ourselves, and it.
Don’t let him know she liked them best,
For this must ever be
A secret, kept from all the rest,
Between yourself and me.’

~ Alice’s Adventures in Wonderland,
Lewis Carroll

Many times through this process we have felt like we’re living in the wild & wacky Adventures of Alice In Wonderland!

We talked to the Radiologist & Emma’s primary Dr. (Oncologist) at St. Jude today.
The Radiologist who is also on the Radiology research team at St. Jude does not feel he can successfully radiate without a high risk of causing extreme irreparable damage due to repeat radiation. The projected damage would be almost definite blindness to Emma’s right eye.
So the Radiologist does not recommend a second round of radiation at this time and does not feel it would produce positive enough results to outweigh the negative effects.

Our primary doctor did not feel there was currently any successful chemotherapy available to satisfactorily address this type of tumor.

So we will not be in any kind of treatment at this time. Emma will go back to 3 month scheduled visits. And we will go back in November for MRI & bloodwork.

We will be looking into anti-cancer diet changes, other lifestyle changes, and research into current treatments currently being conducted for Emma’s diagnosis in the adult arena.

Emma’s Diagnosis: Giant cell glioblastoma (GC) is an uncommon subtype of glioblastoma multiforme (GBM).

We did not expect to go home ’empty-handed’ with no treatment plan. However like all things in life the best laid plans often come to naught. So we continue to think positively, lean on the love & support of family & friends and begin at the end. A new plan, whatever that may be!

Join us on our Journey of finding Hope!🌟

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Nothing Special

Nothing realy happened today. I worked on drawing out the buildings I’m going to paint on the new white walls. I disn’t get very far saying as my messurements were wrong and I had to remark everything over again and they still aren’t quite right. But I’m not fooling with it anymore >0< blech!

Ok then. In the words of Tigger,”TTFN! Ta Ta For Now!”

Fun Stuff

I have become obsessed witha new web comic! I love finding new things that I love! I have now drawn the three of the mian chacters and want to scan them onto the computer and do them in the Corel Painter(a program that you use a drawing tablet with so you draw strait on the compter, ya know vertualy of corse). Aaahhgg so excited ^w^!! can’t though tonight or probly tomarrow cause I’m still painting the room :(. Ahh it’s ok though I can wate a day.

Linking the AWSOME!

I’m going to try topost something everyday even if it’s just something small and probably pointless^w^. I’ll also be linking this to my account on art sight so you guys can see what I’ve been working on. I’m really proud of some of my stuff up there:).http://ocsm.deviantart.com/

I have just recently moved in to Nick and Raven’s old room with Raven. Nick and David have moved in to Claressa and my old room. Me and Raven just painted one of the two walls that we want to paint. We both have paint all over us :)! It was fun we’re only like a sixth of the ways through :P.