October 2015 Update

Hello Friends and Family,

First off, I apologize for not updating you all sooner. 

Good news, bad news is how we usually do this, right? 

The good news is that for months, there really has not been much to update. After Sue's July surgery, progress has been slow but consistent and with the trial she is currently on, time is needed for the doctors to really know if and how well it is doing its job. 

A little background on this trial:
During the July surgery, two areas of tumor growth were successfully removed and a third was not, due to the fact that it was wrapped around a blood vessel. The areas surrounding the extractions, and the remaining tumor were injected with a virus known as Toca 511. This virus is self replicating and attaches itself to cancer cells. Weeks after surgery, the trial introduces a treatment medication known as Toca FC. When the Toca FC enters the cancer cells with the Toca 511, a new chemical is produced, 5-FU (as in F- you, cancer... that's my interpretation at least). 5-FU is an FDA approved cancer fighting drug. The goal is for these chemicals to infect as many cancer cells as possible, and over time go to war and cause the cells to completely self-destruct. The Toca FC treatment is taken by pills on a cycle. Sue is also alternating with an additional chemotherapy treatment drug called CCNU. (the idea is to blast the cancer cells while they are vulnerable from the 5-FU.) Early studies show that the combination of these two may be more effective. 

So for the not-so-good- news... 

It is known that the combination of these medications can at times lower white blood cell counts and make life more challenging. Additionally, during the time when we are waiting for these chemical changes to occur, the tumor that was not removed during surgery is expected to grow. Because of the location of this tumor, there are side effects to that growth. Sue has had increasing seizure activity; something you would probably not notice as they are usually very subtle but the results are becoming more and more obvious. The left-side deficit that existed before the surgery is growing increasingly worse. Her vision is quite terrible, and more recently, she has major neuropathy in both her left foot/leg and left hand/arm. As you can imagine it is becoming more difficult to be independent in day to day tasks. 

Tomorrow, (wed 10/14) Sue will have an MRI (unscheduled... her next was supposed to be on 10/26) to help the team at UCLA determine what is causing the seizures, and how much if any the tumor has grown. This is a rough patch in the journey, that as we understand, is expected to a certain degree. It is difficult to say the least, but we are hopeful that as time goes on, the medication will do it's job without taking more of a toll on her. This week her lab results showed that her white blood cell counts were too low, so they are holding off on her starting the scheduled round of CCNU. 

At this point, there is much that is unknown. As always, we thank you for your continued love, support, and most of all your prayers.
What we do know, is that all the medication and knowledge of doctors in the world, doesn't compare to what our God and Healer can do. We continue to put our faith in Him, and trust that He has been in control and will continue to lead and heal. 

I promise to be more on top of these updates for you all.  

Surgery Updates

Sue's surgery was delayed several hours today; rather than starting at 12:30, it was closer to 3:00.

This morning she was fairly calm and relaxed, and she was able to rest a bit before going in. We will post updates as we get them.

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We just met with the Dr. and the surgery went well. Mom did well and handled everything. She is recovering. We will get to see her briefly tonight, and will update you all on her status here in this post tomorrow. Please continue to pray for these important hours to come. 

Familiar and Unwanted Territory

Hello Friends and Family,

Tomorrow, Friday July 24,  Mama Sue will undergo her 3rd major Brain Surgery since her diagnosis in March of 2013.  Many of you have followed her progress and have been a huge support to her and to the rest of our family. You know by now that Sue is a fighter, among many other things. As her daughter, I am devastated that she has to go through this, again. But I'm encouraged because I know this next step is the best option for her treatment; and that she is in the most capable hands at UCLA. 

For those of you that are not up to date on the latest developments: 

In June, Sue's scheduled MRI showed regrowth of tumors in multiple areas in her brain. We were all disappointed because the clinical trial she had been apart of for the past year and a half had been successful at keeping the tumor growth at bay, and also had relatively mild side effects... in a way, we had time to figure out the new normal, and things were beginning to settle. The thought of her going through another surgery and starting that progress over again is heart-breaking. However, all the while, we have known that there is unfortunately no cure for Glioblastoma, only methods to buy time; and we are all grateful that there was another option ready and waiting. 

Tomorrow, during surgery, Sue will enter a new clinical trial. We are fortunate that there is a trial for her to take part in that is aggressive and has seen positive results in some patients over the years. Surgery is scheduled to be from 12:30- 5pm. We anticipate that she will be in the hospital at UCLA throughout the weekend, and may possibly come home early next week; but it's difficult to say. I know that many of you would happily brave the drive through LA to visit her, but the days following surgery are so important that she have peace and quiet in order to allow her brain to heal, we ask that you instead, please spend time praying for her from home.

Please continue to pray that:

• the doctors will have the knowledge and vision to give her the absolute best care possible.
• during surgery, Dr. Liau will be able to remove all three of the tumors without effecting brain function.
• specifically her vision would not be further effected, as this is currently one of her biggest deficits. 
• her recovery from surgery will be quick and without any set backs.
• her attitude will be positive and hopeful, and without fear.
• the entire family, especially Roger, will have peace during and after the surgery; as well as patience to help with her recovery.

Thank you for continuing to support Sue and our family through this time. We appreciate your love, support, and prayers more than words can express. 

Tomorrow, I will post another bog post, that I will update throughout the day and weekend. Please feel free to check in and leave comments that we will share with Sue.

-Lizzy

June 19th Follow up MRI

4 weeks ago, Sue's scan showed a spot that had not previously been there. Her doctors could not say with certainty that it was regrowth; it's possible that it's just some fluctuation or scar tissue,... They wanted her to come back for another scan in 4 weeks, where they could take another look and note if there had been any changes, in order to make a better decision.

So here we are 4 weeks later... we will head up to UCLA this morning for appointments all day.

Philippians 4:6 "Don't worry about anything instead pray about everything tell God what you need and thank him for all he has done."

This is the verse we must cling to today as we head to UCLA for Sue's follow up MRI. God has done so much for the healing and recovery of Sue, and we are so grateful. But we need Him to remove whatever this spot is so her recovery can continue. Join us, not in worry, but in praise; and ask for complete healing.

Later today, I will update this post with the results we receive.
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RESULTS: 
Unfortunately, we did not receive the news that we wanted to hear. The spot that had emerged on the last MRI has since doubled in size and there are a few other spots that are worrisome. The good news is that the team at UCLA has plans and options in place. We have some decision making to do as a family, in the next few days. As always, please continue to pray for peace, guidance, and complete healing.

December/January Update

Wow, I knew it had been a while since the last blog post, but I didn't realize just how long it had been... in this case, no news is good news... mostly.

I'll do my best to give you a brief account of the last few months in the world of Sue and Roger, and the progress she's making.

In the first part of DECEMBER, Mom went for her regularly scheduled MRI and it was "stable." (Just a reminder- stable is exactly what we want; it means there is no tumor growth) The great significance of this scan is that it marked a year of stable scans since mom's (2nd) surgery in December of 2013. ONE WHOLE YEAR WITH NO GROWTH!!! AMAZING! 

That same week, we had a fantastic opportunity for a fundraiser downtown Carlsbad at Seaworthy Surf Shop. The Hicks Family-an incredible group of 4 brothers, that own the shop, approached us about an art event at the shop, coined "Deck Cancer." Over 50 Local artists painted art on skateboard decks, and we were able to auction them off, all proceeds going to Mama Sue... The event was a huge success because many of you came out to support us. We are continuously so grateful for the support and love you give so freely. Thank you. 

The next week was Christmas, and we were so looking forward to enjoying the day together as a family, with the knowledge that Mom's scan was good, and that we could be confident in her current condition... Unfortunately, that's not exactly how it all played out.

Mom woke up on Christmas morning with pain and a rash on her neck and shoulder, which was quickly confirmed to be shingles... not awesome. Luckily, the doctors at UCLA were super quick to respond and prescribe, but the pain is still an issue. It has now been over a month and while the rash is better and just about healed, the nerve pain remains, and has made it very difficult to get out of the house.  She is frustrated that this has set her back, and made things more difficult. It is unknown what brought on the outbreak. Most likely, stress, but it's possible that it is a result of treatment. We've heard cases of people suffering from shingles for months, or even years, so we are praying that she's seen the worst of it, and she will continue to recover. Mom spent the better part of a month at home, in pain, so her recovery needs to include the rebuilding of her stamina, energy, and strength.  

MOST RECENTLY, You may have heard that yesterday, when she went for her MRI, it was another stable scan! :) We couldn't be happier! The clinical trial medication seems to still be working so she will continue on it at this point. They still want her MRI's to continue every 8 weeks, rather than pushing them out a little longer. Unfortunately, this glioblastoma is known to be so aggressive that if it begins to grow, we would need to know right away. So for now, her next MRI will be in March, not long after the arrival of Sue and Roger's first Granddaughter! 

Tyler and Ashley are expecting their second child, a baby girl in the beginning of March! Great things are happening to our family, and we are blessed to be able to share and celebrate these things together. We continue to pray that this new generation of kids will have many, many happy years with their Nonnie, because we all know she has so much love to give, and so much to teach them about what it means to live a meaningful life spent loving others. 

That's why you read these posts, send her your letters and texts, and spend time praying for her- because she has loved you and made your life more meaningful. Thank you for spreading that love and giving it back to her. Your actions are appreciated more than you know. 

Until next time,
Lizzy

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