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.
Mama Sue
Tuesday, October 13, 2015
Friday, July 24, 2015
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.
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.
Thursday, July 23, 2015
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:
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
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
Friday, June 19, 2015
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."
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.
___________________________________________________________________________________
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.
___________________________________________________________________________________
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.
Saturday, January 31, 2015
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
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
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