8 Month Check in

It's an early morning drive to UCLA, for today's 8 month MRI check. It's getting confusing because we are actually about a year and half into this battle, since Sue's diagnosis in March 2013; but we are 8 months out from her second surgery back in December. Since then, she has been taking a clinical trial medication with so far, good results. Today's significance is that, it was at the initial 8 month MRI last time, that the recurrence popped back up on her scan (which led to her second surgery and change of meds).

We are optimistic that today will yield the same good results we've been getting since starting the trial, but I know that in the back of my mind at least, there is also doubt. I try to push it out; I know we all do. We pray and focus on the good, the constant, the true healer. I know that regardless of results that come today, HE never changes, and HE will lead us through the next phase of our battle- good or bad. 

This morning, please give praise to God who has blessed us beyond words throughout this entire journey. Pray for continued peace and strength for Sue and Rog as they sit and wait today for results. Pray that doubt doesn't linger in their thoughts, and that they are renewed in their hope of assurance that God is in control. And as always, please pray for COMPLETE HEALING. 

Thank you for your dedication to lifting up our family. We know this is the most powerful form of healing. I will post here later today with results. 

- Lizzy, for all of the Roberson

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POST SCAN UPDATE

"Your scan is fine!" Our Dr. at UCLA knows how to start a meeting. Those are the first words out of his mouth as he walks into the room. No need to say hello or ask how you're feeling- get right to the point. AMEN 

So the details are these: 

- the MRI scan showed no change or new growth (answer to prayers)

- the doses and meds will continue on as prescribed (answer to prayers; continue prayers that side effects will be nonexistent or mild as they have been)

- the trial as a whole is getting close to wrapping up and being published. Sadly, not all the participants have had the success that we have seen. Researchers will look closely at tumor tissue and personal cases to try and discover what makes the difference in certain patients. (We pray for a cure for all those affected by brain cancer)

- once the Study is published, Sue will still have access to the meds as long as they continue to provide the same results. 

- as of now, visits to UCLA will continue every 2 weeks, and an MRI every 2 months. There was talk about possibly decreasing the frequency of check ins to once a month, once we reach the 1 year mark.

It was nice to get more info about the trial and study, and even better to hear our Dr. speak about the future with a little more certainty. In the beginning of all this, every time you mentioned Glioblastoma,  doctors would unfortunately look at you as if it were a death sentence. Today, I felt a deep sense of optimism and hope.

To say it simply- today was a good day. Thank you for your constant support and prayers. Until next time- give thanks and ask for more!

We even got some vitamin D during our wait time today!

Greetings everyone!

Mom and Dad wanted me to update everyone on their most recent visit to UCLA this past week.

This week's visit to UCLA was primarily a check in; with the typical blood work and trial med checks. Mom also had an Echo-Cardio Gram. This procedure was protocol for the clinical trial. The purpose was to verify that there are no negative heart-related side effects from the medication. All results showed that there has not been any change to Mom's heart since starting the clinical trial. All is good.

The next scheduled MRI is August 15th. This next MRI will mark 8 months from Mom's second surgery, last December. Please pray for continued reports of no new growth. Please also pray for continued healing of Mom's vision. Her peripheral vision remains lost and though she is undergoing therapy to help, the daily struggle with her vision is challenging.

For those of you not on Facebook, that check in here on the blog to get updates on Mom and Dad, we wanted to let you know that our Silent Auction Fundraiser Event was very, very successful! We were overwhelmed at the outpouring of support we received in the form of auction items, monetary donations, and the turn out of friends and family! We as a family can't thank you enough for all that you did to help us make this a successful night. Also, to those of you that came out to Pollos Maria on Monday night!

Stay tuned for more updates and news from our family, and our journey to beat this beast called Brain Cancer.

As always- Love and Gratitude,

Lizzy for the entire Roberson Family

Silent Auction Event- June 28th

Many of you are aware of the event that we are holding to support Sue and Roger (Mom and Dad). But just in case, this is news to you... Read on! 

We are holding a Happy Hour and Silent Auction where all proceeds will go directly to the Susan M. Roberson Trust. We are so grateful to have received donations from many of you, and will continue to accept donations. We are hoping to have all auction items in our possession by Saturday June 21st. (the weekend before the event) 

As the event is coming closer we want to ensure that all of you have the information so that you can plan to attend! The only way we can ensure a successful night, is by having all of our family and friends there! So, check out our flyer below, and make sure we see you on the 28th at 5pm!  We will continue to post updates on the event here and on our facebook page www.facebook.com/supportmamasue so stay tuned! 

Even more importantly... please continue to pray for complete healing... Mom's next MRI is next Friday, June 20. We want this scan to show that the current treatment is maintaining and that there are no new signs of growth. Thanks for your prayers.

Far Away Hood- Barn Sale Fundraiser

Tomorrow and Saturday, May 23 & 24, our amazing friends at www.farawayhood.com are having a Barn Sale in Fallbrook! 25% of their earnings from this weekend will go straight to the Susan M. Roberson Trust!

The address for the sale is 4075 Burma Spur Fallbrook 92028.

We are so grateful for their generosity, and hope to see you all at the sale! I will be there to work/help out/SHOP on Saturday, so come see me!

Check out their site to see some of the amazing vintage and up-cycled items they will be offering! These ladies are seriously soo talented- Don't miss out!

MRI update 4/25/14

I am thrilled to announce that today was ANOTHER GOOD SCAN! 

Results of the MRI today showed that everything is stable and maintaining! No new tumor growth and all blood tests are normal. The trial meds will continue as planned. Results from today were quite a relief to us all. We tend to get anxious in the week leading up to an MRI, but God is good and reminds us that we need to fear not- he is in control! Thank you all for your continued prayers. Please give thanks, and continue to lift mom up in prayer. As always, Sue is grateful for your love and support. 

Take this great news into your weekend, and enjoy time with family and friends; as we will too! 

Love and Gratitude,

Lizzy (For Mama Sue and the whole Roberson Family)

PS- a few great pics of Mama Sue from last weekend. 

Mom and me on Easter 

Nonnie and Reid making beautiful Easter Eggs

Sophia & Chloe Jewelry Fundraiser

We are so excited to be sharing this news with you! Sophia & Chloe are offering 40% of their online jewelry sales straight to the Susan M. Roberson Trust. This generous offer comes when you purchase any of their beautiful jewelry and enter the offer code MAMASUE at checkout. 

Treat yourself or a woman in your life to a beautiful piece of jewelry, all while supporting Mama Sue! Thank you for taking a moment to browse through their collection to find the perfect piece for you. 

Visit  www.sophiaandchloe.com and enter MAMASUE and checkout

Ongoing Update

It’s been a while since our last dose of good news, so we wanted to give you an update on the most recent happenings in our world. (Also- I wrote this about a week ago, and am just getting around to publishing... sorry for the delay)

Last Friday (two weeks ago really) was a “UCLA Day”, as we call them; a day of early rising and hitting the road to get up there for a day full of poking and prodding. On UCLA Days when there is not an MRI, the drill is usually pretty standard: blood work, followed by a check-in at the research center, a quick lunch, and hopefully back on the road before traffic gets too horrendous. Friday’s check-in was positive and uneventful. (PS- we like uneventful) Blood work came back fine and the study meds will continue as directed.

Recently, mom started seeing a new eye doctor, to get a second opinion and some occupational therapy for her loss of vision. The loss of peripheral vision on her left side remains to be the biggest struggle and hindrance of her day-to-day progress. Imagine not seeing someone who walks up next to you, or passes you something at the table, or just being unsure of your surroundings because you’re only ever seeing just half. Obviously, this is a problem that could be much worse and if this is the challenge that she has to live with, we will deal; however, it most definitely makes things difficult and most of all frustrating. She now has a new contact prescription and new glasses. :)

Her new Dr. seems to believe that with time and specific therapies, the pathways in the brain that carry the optic nerves and fibers that control vision can be restored, at least somewhat. This was music to our ears and we are hopeful! So for now that means, weekly visits to a “spinning table and flashing lights” and daily eye exercises. (I apologize for the crude explanation, but that’s the most basic description) Like most people going through any type of physical therapy, Mom doesn’t exactly enjoy these therapies. But agrees that if it will help her current vision, it will be worth it. 

As always, we as a family, on behalf of Sue, ask that you continue to think positive thoughts, and send up prayers for strength and complete healing. Through all this we know one thing for sure- God is in charge and He is good. Dr.’s are great, and we’re thankful for those we’ve been blessed with, but HE is the true healer. So please, ask for his favor in her health, and give thanks for all that we’ve been given along the way. Wednesday of this week (last week) was exactly one year from Mom’s first surgery…a milestone that many with her diagnosis sadly do not get to see… we have so much to be thankful for.

As her daughter, I ask something too- if you find time in your coming week to find some way to send some words of encouragement to her, be it through the internet, in a card, text, or voicemail, know that it will be graciously received. When we talk about the people that this blog and the Facebook page reaches, it brings tears to her eyes every single time. You are so important to her; please let her know you feel the same way. Every bit of encouragement and positivity is stronger than any dose of trial medication. :)

On that note- the same goes for Roger/Dad. Those of you that know this dynamic duo know that they are a true team, and what one feels, the other does as well. He could use your encouragement. He is, as always, everyone’s rock.

Thanks for reading. Sue's next MRI is scheduled for Friday April 25th. I will post results here. 

How to Give and Support

Many of you have asked about or already contributed to a trust that has been established to assist with medical bills, with the help of Tracy Carmichael (our official Guardian Angel). The information for how to donate is below. The generosity of those who have already contributed is truly incredible; and we thank you so much. 

The trust is the Susan M. Roberson Trust 2013 and checks can be made out directly to it, and sent to 

                               Tracy Carmichael

                               4566 Horizon Dr.

                               Carlsbad, CA 92008

If you have any questions regarding the trust, please email Tracy @ whatzuptlc@yahoo.com

Thank you for reading and caring about Sue. Please continue to PRAY FOR COMPLETE HEALING! We will post updates here. 

2/28/14- UCLA Update

Hi Everyone-

I just received news that everything went well today! Today was Sue's MRI and check-in up at UCLA. 

The MRI results showed no new tumor growth (which is exactly what we have been praying for)! Woop Woop!!! This is her first MRI since right after her last surgery in December. The images showed a slight amount of reduction in the tissues surrounding where the tumor was too! Also good news! (reduction basically translates to the cells in the tissue returning to "normal"- there is a difference in color on the MRI image) This could be due to a decrease in swelling from after surgery, or more proof that the trial med is working. I'd like to believe it's a combination of both, but more of the latter! 

This news was received with relief by all of us, but most importantly, by Mom. She will continue on the Trial Meds as prescribed. Her next check up will be March 14th, but no MRI scheduled until the end of April. With some down time, she can focus on regaining energy and hope!

She wanted to make sure that I thank all of you for your PRAYERS and LOVE! We have been totally overwhelmed by the response we've gotten from this blog. She couldn't believe when I told her how many of you had visited! Keep the love and prayers coming!  Your positive support is such a motivation to her.

We will continue to update you here of any progress. Feel free to leave comments below! 

Have a great weekend- Give thanks for answered prayers, and ask for continued healing!

Love and Gratitude, 
Lizzy

Happy Birthday

Hi everyone. This is Lizzy, Sue's daughter. We have been talking for a while now about starting something like this so we can have a place to easily update you all on Mom's progress. We know how much you all care about her, and we want you to always feel connected and in the loop. Although Mom would love to talk to you all and post on Facebook herself, these days, getting on the computer is difficult, and we think this is the best way for her to update all of you.

In the last year, we as a family have been completely overwhelmed by the love and support we have received from all of you. We wanted to start off here thanking you from the bottom of our hearts for all that you've done for us. So many of you have provided amazing meals, run errands, spent time with, and PRAYED for Mom. Your love has made all the difference.

We are approaching the year mark from when Mom was diagnosed last March; hence the Happy Birthday! We are celebrating the gift of a year, giving thanks, and asking for many more!

A brief summary of the last year, for those of you who may not know...

In March 2013, a trip to the Emergency Room resulted in the discovery of a very large tumor in the right temporal lobe of Sue's brain. After surgery (at the hands of a most amazing team at Scripps La Jolla) pathology reports confirmed that the tumor was a Grade 4 Glioblastoma Multi-forme, an aggressive form of brain cancer. After recovering from surgery, Sue started treatment in the form of radiation and chemo. Sue is being treated by the Neuro-Oncology Department at UCLA Medical Center. We feel so blessed to have access to the true experts on this form of cancer. Since last summer, Sue and Roger have commuted up to UCLA regularly for check-ins and MRI's. Sometimes once a month, but most recently once a week. 

For most of the year, treatment seemed to be going as well as could be expected. In November, an MRI showed a new spot that was previously not there. We watched it closely for 4 weeks, and when it doubled in size, it was decided that a second surgery would be necessary. Sue's second surgery went well and she recovered very quickly from it. She is currently taking part in a clinical study through UCLA for a new medication designed specifically for patients with reoccurring Glioblastoma. We all pray that this is the miracle drug that we and so many other families have been waiting for. It is not considered Chemo, but is similar. The possible side effects from this medication are what you would expect with most Chemo meds, aside from hair loss... Mom is rocking a combover that she says hides her Miley Cyrus  hair do. Her hair has been steadily regrowing ever since radiation last year. The major side effect is fatigue, which is better or worse depending on the day. In Mom's words, "it is unnerving to be taking something that no one really knows much about." She is taking it one day at a time; working hard to stay positive and healthy. 

Her next MRI is scheduled for Friday, February 28th- We will post an update here. 

Again, words can't express the gratitude that we feel toward all of you. It has become so apparent to me how important my mom is to all of you. I've had conversations with many of you that just want to do something to show your love and in many cases, your thanks, for the many ways Sue has touched your life. I've always known, but never been more aware of what an incredible person my mom is. 

Many of you have asked about or already contributed to a trust that has been established to assist with medical bills, with the help of Tracy Carmichael (our official Guardian Angel). The information for how to donate is below. The generosity of those who have already contributed is truly incredible; and we thank you so much. 

The trust is the Susan M. Roberson Trust 2013 and checks can be made out directly to it, and sent to 

                               Tracy Carmichael

                               4566 Horizon Dr.

                               Carlsbad, CA 92008

If you have any questions regarding the trust, please email Tracy @ whatzuptlc@yahoo.com

Thank you for reading and caring about Sue. Please continue to PRAY FOR COMPLETE HEALING! We will post updates here. 

Love and Gratitude,

The Roberson Family