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.

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 26^th.

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 12^th, 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 11^th). Dr. Kun, Emma’s radiologist has kindly given us Friday, April 11^th 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.

Date Night

Emma went on a date this evening with her ‘Young Man’. Logan is also a Junior at Smith Station High School, he is in the high school ROTC program and a diligent student.
They went to the movies, ate too much popcorn and had a good time.
Brian picked the kids up & they came back to the house for a late supper and ‘hang-out’ time.
We enjoyed seeing Logan, he’s a super cool guy. It’s such a pleasure to share in these simple joys of youth.
It was a very good day!

Saturday Night Fever

Saturday nights mean what? Dinners out? Movies? Date night?

In our house that means an onslaught of teenagers! Tonight was no different. Swimming, hamburgers, watermelon & pickle pops were the fair of the evening. The ice cream was hardly touched.

Gone are the quiet evenings of two. But no hard feelings! The TV is taken over by video games, the pool is full of kids and so is the kitchen!

When I think about how fast these kids have to grow up and what is expected of them I am so proud to be part of their lives!

Tonight we celebrate Claressa and her departure for Florence, Italy on Thursday for a year of school abroad.
But she’ll still be with us in spirit and the fun and chaos will continue.

Arrivederci Claressa our sweet girl!

One Month Flew Bye Bye

Emma is doing well. It still blows me away that she had a second brain surgery only a month ago. Today was the conclusion of her first week back to school. She got 100% on her French presentation which had to be done from memory.
Tonight she’s off to the football game to see her friends and her brother Nick play the trumpet in the marching band.
While I see that she tires a bit more easily than before I know she would disagree. She was happy to go back to school, see her friends and that special guy she’d been missing. Emma has been blessed with a most unusually positive attitude. I kept expecting at some point a normal, age appropriate response to this news of tumor regrowth & another resection surgery…..anger. That response never came.
She’s happy, upbeat, and positive. She has some wonderfully loving and supportive family, friends, teachers, and peers who encourage her. Love never fails, and is the backbone of HOPE!
So we celebrate one month since surgery with a wonderful recovery, fabulous support system, and a new anticancer lifestyle!

Thank you for being part of the journey!

Lean on Me….Walkin On Sunshine

Emma was cleared to go to school at her two-week follow-up appointment last week at St. Jude in Memphis, TN.

She wasn’t feeling quite up to going Monday, so she plans to start this coming Tuesday, September 3rd.

Em will be a Junior in high school this year. Its a big year, full of firsts, fun, & memories that last a lifetime!

I know I remember my Junior year with mixed feelings of joy & regret!
But most 16 year old girls don’t start their Junior year of high school bald and just recovering from brain surgery. I have no doubt this won’t slow Em down too much though! She’s in 4 AP (advanced diploma) classes, thinking about Junior Prom, PSAT’s and studying for her driving test.
Normal teenage concerns.
Hair grows back, but homework remains!

Faithful friends help make this transition not only bearable but show through their love & kindness that Angels do truly walk among us!

Back In Time – All Roads Lead Somewhere

Wednesday: August 21st.

We went to our scheduled appointment with Emma’s primary doctor and discovered we had an appointment with the Radiologist to discuss treatment options at 9am Friday. So we will stay a few extra days at the Grizzlies House. Tomorrow, Thursday we will go to the Memphis Zoo, then a Chilli’s hosted Grill-out party at the Target House Thursday evening. And then head back to MS. Friday after Our appointments. We will stay Friday night in Burnsville, MS with cousins and then head home Saturday morning.
Emma’s staples were removed, successfully today, although painfully. She was instructed she could now wash her incision. Her Neurosurgeon was happy with her progress & signed her t-shirt.
Long but productive day!

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!🌟

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.