I read a wonderful blog entry from a young husband and father who has brain cancer. He wrote a letter to cancer, with no intention of publishing it; but he changed his mind, and I am so glad he did. I read his letter and found strength in his determination to make his brain cancer take a back seat to his life. This man thanked cancer for giving him a new life - a better life. He now knows his God and he knows what is really important in life. He does not expect cancer to win in the end. Neither do I.
Heather is much like this man. She has not written a letter to cancer, but she has not given it a chance to rule her life. She put this demon on a back burner and never plans to use that burner again! It is O - V - E - R!
Next week we head to San Francisco for her bi-monthly Dr. Chang visit. As you know, I begin to start my jitters about two weeks prior, so I am in full-swing now. Actually, we are waiting an extra week this month because of Dr. Chang's schedule, so the anxiety is a little stronger this time.
But, sometimes things work for the best. My mom - Heather's grandma - passed away July 12, which would have been either a travel day or the day prior to travel if our schedule had been on time. Losing a loved one is something no one has to try to explain. Simply put: It hurts like HELL! I am so thankful I was at her side, so I'm happy our UCSF trip is a week later than normal.
Heather is doing very well. I think the steroids are finally OFF! She is working hard at her physical therapy, eating very healthy, and exercising regularly. I think good habits will equal good results.
She has settled into her new home and seems to be enjoying the new location close to us :) She and I try to walk our dogs together every night, which is a perfect "mom and daughter time." I am so blessed.
Please keep Heather in your prayers as we head to UCSF. I have learned our new way of life - waiting, waiting, waiting. But, when I hear Dr. Chang say the words "stable" or "no change," all the waiting is worth it. I turn to Heather, our smiles meets, and the hugs begin!
Thursday, July 15, 2010
Thursday, June 17, 2010
Summer Happenings
It has been awhile since I have written, and I think that must be "good" news. May ended my 25 year teaching career, so I was very busy preparing for my next "career": retirement.
My nephew is trying to make changes to the website, but he is having some technical problems. Currently, the site is not up-to-date and I cannot fix that. I am eager to get it fixed because I have some good news to share. Dr. Susan Chang will be coming to Omaha August 26 - 27 for the first Brain Tumor Symposium at Methodist Estabrook Cancer Center. LFAC is sponsoring the event, and I'm going to work to make certain it is a success. I met with several people to help organize the two-day symposium. August 26 will be dedicated to patients, family, friends, and caregivers. Topics will include the following: Diagnosis, gliomas (low and high grade), radiation, surgery options, trials, vaccine, and a question / answer session. Dr. Chang will spend the entire day with this audience. I'm so excited to offer her expertise to such a special group of people. August 27 is a medical symposium for medical personnel. Again, Dr. Chang will share her expertise and other medical doctors will deliver up-to-date information to the medical community regarding brain tumors. Methodist Estabrook Cancer Center will be promoting this event, so I will keep people posted. We are so excited about this opportunity!
Heather is doing well - so far, so good. She just moved into her new house, so she is keeping busy unpacking and decorating. We are so happy that she now lives close to us - about 8 blocks from us. We can take walks, help her with her dog, or help her with anything she may need. It is so convenient. She continues her physical therapy twice a week. I think it helps to keep her left side strong. The past month has been difficult for her for many reasons, and she continues to amaze me with her strength and her determination to face adversity head on. She is not going to waste her life, that is for certain! She remains my role model.
I have a special thank you to shout out: THANK YOU ROSARY! This lady has been sending Heather cards regularly for over two years. We have College World Series seats by Rosary, and we only see each other during the CWS. But she has made a lasting impression on our family with her continued support through prayer and cards. So, thank you, Rosary.
The third annual Monster Bash for Brain Cancer is scheduled for Thursday, October 28. Mark your calendars now. The KAT radio station is sponsoring it this year, so we are hoping planning the BEST Monster Bash yet: silent auction, door prizes, raffles, costume contest for adults and children, live band, and more. As always, all money raised goes directly to help with diagnosis, treatment, awareness, etc. for brain cancer at Estabrook Cancer Center. It remains our mission to make a difference.
I was watching Dr. Oz the other day, and WOW - he was doing a show on cancers. He discussed the 5 leading cancers. He started with symptoms and had someone try to guess the cancer. Well, brain cancer was #4 on his list of 5. As a reminder: A constant headache that is worse in the morning than later in the day or a headache that includes vomiting / nausea, a new seizure in an adult, unsteadiness or imbalance - especially with a headache, gradual loss of movement or sensation in a limb, or speech difficulty can be a sign of brain cancer. Get it checked out and demand an MRI if not satisfied. And don't forget about the second opinion.
My nephew is trying to make changes to the website, but he is having some technical problems. Currently, the site is not up-to-date and I cannot fix that. I am eager to get it fixed because I have some good news to share. Dr. Susan Chang will be coming to Omaha August 26 - 27 for the first Brain Tumor Symposium at Methodist Estabrook Cancer Center. LFAC is sponsoring the event, and I'm going to work to make certain it is a success. I met with several people to help organize the two-day symposium. August 26 will be dedicated to patients, family, friends, and caregivers. Topics will include the following: Diagnosis, gliomas (low and high grade), radiation, surgery options, trials, vaccine, and a question / answer session. Dr. Chang will spend the entire day with this audience. I'm so excited to offer her expertise to such a special group of people. August 27 is a medical symposium for medical personnel. Again, Dr. Chang will share her expertise and other medical doctors will deliver up-to-date information to the medical community regarding brain tumors. Methodist Estabrook Cancer Center will be promoting this event, so I will keep people posted. We are so excited about this opportunity!
Heather is doing well - so far, so good. She just moved into her new house, so she is keeping busy unpacking and decorating. We are so happy that she now lives close to us - about 8 blocks from us. We can take walks, help her with her dog, or help her with anything she may need. It is so convenient. She continues her physical therapy twice a week. I think it helps to keep her left side strong. The past month has been difficult for her for many reasons, and she continues to amaze me with her strength and her determination to face adversity head on. She is not going to waste her life, that is for certain! She remains my role model.
I have a special thank you to shout out: THANK YOU ROSARY! This lady has been sending Heather cards regularly for over two years. We have College World Series seats by Rosary, and we only see each other during the CWS. But she has made a lasting impression on our family with her continued support through prayer and cards. So, thank you, Rosary.
The third annual Monster Bash for Brain Cancer is scheduled for Thursday, October 28. Mark your calendars now. The KAT radio station is sponsoring it this year, so we are hoping planning the BEST Monster Bash yet: silent auction, door prizes, raffles, costume contest for adults and children, live band, and more. As always, all money raised goes directly to help with diagnosis, treatment, awareness, etc. for brain cancer at Estabrook Cancer Center. It remains our mission to make a difference.
I was watching Dr. Oz the other day, and WOW - he was doing a show on cancers. He discussed the 5 leading cancers. He started with symptoms and had someone try to guess the cancer. Well, brain cancer was #4 on his list of 5. As a reminder: A constant headache that is worse in the morning than later in the day or a headache that includes vomiting / nausea, a new seizure in an adult, unsteadiness or imbalance - especially with a headache, gradual loss of movement or sensation in a limb, or speech difficulty can be a sign of brain cancer. Get it checked out and demand an MRI if not satisfied. And don't forget about the second opinion.
Saturday, May 8, 2010
May is Brain Tumor Awareness Month
Another MRI, Dr. Chang visit, and blessing: "no change." What better Mother's Day gift could I ever, ever receive?
Heather and I took the train from San Jose to San Francisco this time. We actually enjoyed the experience very much. Surprisingly, there were no glitches - of any kind. While on the "baby bullet," Heather and I shared funny stories and future possibilities. We always seem to be able to make certain we make the best of all situations, and this time was no different.
After the MRI, we headed to the shuttle for our UCSF visit with Dr. Chang. Two transfers later, we're there. Unfortunately, someone was not hearing good news, so Dr. Chang was running late. Instead of sitting there, we headed for the sunshine - and wind - outside. People watching in San Francisco is always a treat :) The farmer's market offers such sweet strawberries, and the fresh flowers tickle our senses, so sitting outside helped to clear our heads and give us the strength to enter the office on 8th floor once again.
Once again our legs and feet started twitching and then we met the couple from Idaho. She has Glioblastoma (Grade 4); Heather, Anaplastic Astrocytoma (Grade 3). Her husband found UCSF while researching; I found UCSF while researching. Neither one of us liked the options that were given to us "way back then." We have all come so far. All of us know we are in the "right' place; and because of UCSF, we are able to share life with our loved ones. Nothing is more important than that!
Dr. Chang finally emerges, apologizing for running so late. Never, Never would we be impatient with that. I'm so thankful we aren't the ones hearing the news again. I'm so thankful we get to see Dr. Chang's smile when she greets Heather. "No change." Yes, those are the best words ever :)
May is Brain Tumor Awareness month. PLEASE say a prayer for a cure. PLEASE pray for someone with brain cancer. PLEASE do something to make May be heard: BRAIN CANCER sucks! We need a cure! We need HOPE!
Heather and I took the train from San Jose to San Francisco this time. We actually enjoyed the experience very much. Surprisingly, there were no glitches - of any kind. While on the "baby bullet," Heather and I shared funny stories and future possibilities. We always seem to be able to make certain we make the best of all situations, and this time was no different.
After the MRI, we headed to the shuttle for our UCSF visit with Dr. Chang. Two transfers later, we're there. Unfortunately, someone was not hearing good news, so Dr. Chang was running late. Instead of sitting there, we headed for the sunshine - and wind - outside. People watching in San Francisco is always a treat :) The farmer's market offers such sweet strawberries, and the fresh flowers tickle our senses, so sitting outside helped to clear our heads and give us the strength to enter the office on 8th floor once again.
Once again our legs and feet started twitching and then we met the couple from Idaho. She has Glioblastoma (Grade 4); Heather, Anaplastic Astrocytoma (Grade 3). Her husband found UCSF while researching; I found UCSF while researching. Neither one of us liked the options that were given to us "way back then." We have all come so far. All of us know we are in the "right' place; and because of UCSF, we are able to share life with our loved ones. Nothing is more important than that!
Dr. Chang finally emerges, apologizing for running so late. Never, Never would we be impatient with that. I'm so thankful we aren't the ones hearing the news again. I'm so thankful we get to see Dr. Chang's smile when she greets Heather. "No change." Yes, those are the best words ever :)
May is Brain Tumor Awareness month. PLEASE say a prayer for a cure. PLEASE pray for someone with brain cancer. PLEASE do something to make May be heard: BRAIN CANCER sucks! We need a cure! We need HOPE!
Thursday, April 15, 2010
Breakfast To Begin the Day
I just returned from our 2nd Methodist Hospital Foundation / Estabrook Cancer Center breakfast. Last year, the breakfast celebrated the support from the UNO Hockey Team and the Community for raising $44,000. This year, we celebrated the same groups for raising $50,000. WOW! To finally be able to personally thank the team, coaches, doctors, community members, and friends who all made it possible started my day like a good breakfast :) Of course, a wonderful breakfast was served, but I just enjoyed the energy provided through seeing so many great people sitting in one location.
LFAC was honored to be able to recognize the efforts of the UNO Hockey team - players, coaches, trainers, managers, and staff. Without their commitment, we would not have had an event. In addition to recognizing the UNO side, I was also able to recognize two people who have stood by my side throughout the entire process: Robyn Sitzman and Jean Koerten. Their creativity and tenacity have certainly helped LFAC to succeed. And the Methodist Hospital Foundation team - so supportive! And we were so honored to have so many medical personnel in attendance as well. Dr. Poppa (Heather's oncologist) even took the time to speak to everyone.
The most fun part of the morning being able to finally announce the winners for the "Stache-for-Cash" fundraiser:
Best Effort: Terry Broadhurst (#17)
Most Original Face: Matt Smith (#2)
Most Bushy Face: Jawed and Mark VonBrokern (#4)
Best Stache: Dr. Lydiatt and Eddie DelGrosso (#7)
Community Spirit: Coach Mike Kemp
Omaha's Face (raised the most money): David Scott
Special recognition went to Ron Brasel for his support throughout the event. He made certain LFAC was on the dasher boards - gray ribbons and our frog logo.
Again, the morning is one that I look forward to because I can say THANK YOU to so many people!
As my husband said this morning to the group: There is a different between donating money and philanthropy. UNO and all the people who made the event successful were involved in philanthropy!
LFAC was honored to be able to recognize the efforts of the UNO Hockey team - players, coaches, trainers, managers, and staff. Without their commitment, we would not have had an event. In addition to recognizing the UNO side, I was also able to recognize two people who have stood by my side throughout the entire process: Robyn Sitzman and Jean Koerten. Their creativity and tenacity have certainly helped LFAC to succeed. And the Methodist Hospital Foundation team - so supportive! And we were so honored to have so many medical personnel in attendance as well. Dr. Poppa (Heather's oncologist) even took the time to speak to everyone.
The most fun part of the morning being able to finally announce the winners for the "Stache-for-Cash" fundraiser:
Best Effort: Terry Broadhurst (#17)
Most Original Face: Matt Smith (#2)
Most Bushy Face: Jawed and Mark VonBrokern (#4)
Best Stache: Dr. Lydiatt and Eddie DelGrosso (#7)
Community Spirit: Coach Mike Kemp
Omaha's Face (raised the most money): David Scott
Special recognition went to Ron Brasel for his support throughout the event. He made certain LFAC was on the dasher boards - gray ribbons and our frog logo.
Again, the morning is one that I look forward to because I can say THANK YOU to so many people!
As my husband said this morning to the group: There is a different between donating money and philanthropy. UNO and all the people who made the event successful were involved in philanthropy!
Wednesday, March 17, 2010
Belief in Hope on the Horizon
San Francisco's trip resulted in another "status quo" for the tumor. Heather continues to do well, considering part of the dumb thing is still in her head! Waiting for Dr. Chang to greet us in the waiting room is always difficult: I notice that my legs twitch, I can't sit still, and Heather is a bit "short." I look around the waiting area and always remind myself that EVERYONE is in that waiting room because of a brain tumor. I begin to make-up my own stories about all who are waiting; and in my stories, they all survive because Dr. Chang saved their lives. Eventually, Dr. Chang comes out and gives Heather her hug and we move to the inner room.
Dr. Chang sits at the multi-screen computer and begins her report. We have been so fortunate that her reports - other than the first one she delivered to us - have been good. I always feel odd saying we received "good" news when Heather has a freakin' tumor in her head, but "status quo" IS GOOD NEWS! No change = GOOD NEWS. We are lucky :)
We had to ask Dr. Chang some questions that were a bit uncomfortable because it meant we had to also discuss the tumor, the Grade 3, the current prognosis - all the UGLY stuff that comes with having brain cancer. It's those subtle reminders that can knock the wind out of you, but then you realize that we are still planning for the future because we believe in the future. We believe in better treatments; We believe in miracles. We believe in a cure.
From the moment Heather was born, I knew she had a purpose in life. She was 3 weeks late (and I was as swollen as a anyone would be after carrying a child an extra three weeks in Nebraska during the summer!). But what made her birth date more special was the date itself: September 13. The same date my father died from brain cancer in 1962, Of course, I had NO vision of what was to come, but I just knew she was special. So, I have always believed her diagnosis just means that she will be around for a cure. The circle of life will be completed with her receiving the treatment that my father could never even dream of. So, through those questions and answers that we shared with Dr. Chang, comfort came when we could say: "We never know when that cure will be here, but it will."
Heather had to see a neurologist Thursday (3/18). Dr. Chang thought Heather might be having some motor seizures on her left side, particularly in her left hand. In addition, her left side seems to be a bit weaker, so she is back into Physical Therapy. The neurologist, Dr. Diesing, believes her issue is more spasmodic, not seizure related. However, she will undergo an EEG on April 2 to make certain. She will forever need to maintain muscle therapy, which she is already learning in physical therapy. He really explained how complicated her surgery was and how well she is doing for such a task. Apparently, we never knew the full extent of her surgery. We have been told before that there is no way surgery could ever get any closer to the motor skills area because there is NO room. Dr. Long performed the surgery right on the line with NO room to spare. I guess hearing it again was good for us.
I cannot think or a more appropriate way to end this post: In memoriam of Nathan Waggoner, a very courageous 17 year old who lost his battle with brain cancer this morning (3/19/2010). We honor him for his fight and we honor him for his courage. As a mom, I don't even want to think about what Monica and her family are going through right now. Our heartfelt sympathies and prayers go to the entire family and the friends Nate has left behind. God Bless.
Sue
Dr. Chang sits at the multi-screen computer and begins her report. We have been so fortunate that her reports - other than the first one she delivered to us - have been good. I always feel odd saying we received "good" news when Heather has a freakin' tumor in her head, but "status quo" IS GOOD NEWS! No change = GOOD NEWS. We are lucky :)
We had to ask Dr. Chang some questions that were a bit uncomfortable because it meant we had to also discuss the tumor, the Grade 3, the current prognosis - all the UGLY stuff that comes with having brain cancer. It's those subtle reminders that can knock the wind out of you, but then you realize that we are still planning for the future because we believe in the future. We believe in better treatments; We believe in miracles. We believe in a cure.
From the moment Heather was born, I knew she had a purpose in life. She was 3 weeks late (and I was as swollen as a anyone would be after carrying a child an extra three weeks in Nebraska during the summer!). But what made her birth date more special was the date itself: September 13. The same date my father died from brain cancer in 1962, Of course, I had NO vision of what was to come, but I just knew she was special. So, I have always believed her diagnosis just means that she will be around for a cure. The circle of life will be completed with her receiving the treatment that my father could never even dream of. So, through those questions and answers that we shared with Dr. Chang, comfort came when we could say: "We never know when that cure will be here, but it will."
Heather had to see a neurologist Thursday (3/18). Dr. Chang thought Heather might be having some motor seizures on her left side, particularly in her left hand. In addition, her left side seems to be a bit weaker, so she is back into Physical Therapy. The neurologist, Dr. Diesing, believes her issue is more spasmodic, not seizure related. However, she will undergo an EEG on April 2 to make certain. She will forever need to maintain muscle therapy, which she is already learning in physical therapy. He really explained how complicated her surgery was and how well she is doing for such a task. Apparently, we never knew the full extent of her surgery. We have been told before that there is no way surgery could ever get any closer to the motor skills area because there is NO room. Dr. Long performed the surgery right on the line with NO room to spare. I guess hearing it again was good for us.
I cannot think or a more appropriate way to end this post: In memoriam of Nathan Waggoner, a very courageous 17 year old who lost his battle with brain cancer this morning (3/19/2010). We honor him for his fight and we honor him for his courage. As a mom, I don't even want to think about what Monica and her family are going through right now. Our heartfelt sympathies and prayers go to the entire family and the friends Nate has left behind. God Bless.
Sue
Monday, March 1, 2010
Omaha Did It Again!
Who would have ever thought that LFAC's "BIG" fundraiser would have another successful year? When we raised $44,000 last year, I never thought we would top it. But leave it to Omaha to support a great cause once again in 2010!
When the final horn sounded to end the game on Saturday (2/27), we had our "estimate" for the announcement: almost $50,000. We are still counting all the money, which is coming from several directions, and we are now just barely over $50,000. I think I am still in shock. So many volunteers helped to make this dream come true: Michele, who has a vested interest in both UNO and brain cancer; Bob and Robyn, who have made brain cancer their personal cause even though Bob is battling his own fight with lymphoma; Jean and Jeff, who continue to support LFAC; Kate, who is now known as our very own "ticket master"; and all the people who supported us during the six games. Each game we had about 30 volunteers, some of whom worked more than one game.
Jon and I are exhausted but feel so proud to announce that LFAC will be able to purchase the Functional MRI (fMRI) for Methodist Hospital and Estabrook Cancer Center. We created LFAC to make a difference, and now we have. But, without all the support from our family, friends, and Omaha community, that would not have been possible. So, THANK YOU!
Someone asked me, "So, now what are you going to do?" My response: "Going to plan our next event [car show, I think]!" I'm certain we can continue to help in some manner.
Currently, Heather and I are preparing for her UCSF medical appointment next week. Unfortunately, Heather is sick with bronchitis and an ear infection. She has been miserable for about two weeks. With a new dose of antibiotics and steroid breathing treatments, hopefully she can shake the bug.
Brain Cancer Update from The National Cancer Institute:
In 2009 = 22,070 new brain cancer diagnoses; 12,920 brain cancer deaths. TOO MANY!
When the final horn sounded to end the game on Saturday (2/27), we had our "estimate" for the announcement: almost $50,000. We are still counting all the money, which is coming from several directions, and we are now just barely over $50,000. I think I am still in shock. So many volunteers helped to make this dream come true: Michele, who has a vested interest in both UNO and brain cancer; Bob and Robyn, who have made brain cancer their personal cause even though Bob is battling his own fight with lymphoma; Jean and Jeff, who continue to support LFAC; Kate, who is now known as our very own "ticket master"; and all the people who supported us during the six games. Each game we had about 30 volunteers, some of whom worked more than one game.
Jon and I are exhausted but feel so proud to announce that LFAC will be able to purchase the Functional MRI (fMRI) for Methodist Hospital and Estabrook Cancer Center. We created LFAC to make a difference, and now we have. But, without all the support from our family, friends, and Omaha community, that would not have been possible. So, THANK YOU!
Someone asked me, "So, now what are you going to do?" My response: "Going to plan our next event [car show, I think]!" I'm certain we can continue to help in some manner.
Currently, Heather and I are preparing for her UCSF medical appointment next week. Unfortunately, Heather is sick with bronchitis and an ear infection. She has been miserable for about two weeks. With a new dose of antibiotics and steroid breathing treatments, hopefully she can shake the bug.
Brain Cancer Update from The National Cancer Institute:
In 2009 = 22,070 new brain cancer diagnoses; 12,920 brain cancer deaths. TOO MANY!
Saturday, January 30, 2010
UNO / LFAC Team Together Again
One year ago, we were going crazy trying to prepare for our first UNO / LFAC fundraiser. Fast forward - we are doing it again. "Stache-for-Cash" will be starting Friday, February 5, and continue through the month of February: 2/5, 2/6, 2/12/, 2/13, 2/26/ and 2/27.
Instead of participants shaving hair off this year, they are currently trying to add some to their faces. Participants are sporting facial hair, wearing pins that say, "Ask me about my Stache," and trying to raise money so that they remain in the competition. After the first series, five participants will be eliminated. After the second series, ten more will be eliminated. The last series will determine the winners: Most Bushy, Best Effort, Most Original, Best Stache / Face, and Mr. Omaha (whoever raises the most money).
Along with "Stache-for-Cash," special raffles and a jersey auction will take place. On Friday 2/26, LFAC will distribute 2,000 wristbands; and on Saturday 2/27, Methodist Hospital Foundation will distribute 5,000 key chain flashlights for a special lighting ceremony before the game. Brandi Petersen and Jeff Degan will be the emcees again this year. In addition, each game will honor a brain cancer survivor / patient as he/she ceremoniously drops the puck. After last year's $44,000, our sights are set high. The goal is $50,000 this year.
LFAC is set to purchase a Functional MRI (fMRI) for Methodist Hospital. fMRI is becoming the diagnostic method of choice for learning how a normal, diseased, or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.
Physicians perform fMRI to: *examine the anatomy of the brain; *determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping; *help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function; *monitor the growth and function of brain tumors; and
*guide the planning of surgery, radiation therapy, or other surgical treatments for the brain. Although brain tumor patients will definitely benefit, so will other brain trauma patients.
February will be busy and memorable. We will be busy, busy, busy with the fundraiser; and the one weekend UNO is not in town, we will be celebrating Heather and Mike's engagement with a wonderful party. Every weekend will be filled with excitement and energy.
Then March will come and we will head to San Francisco again for another visit with Dr. Chang. Until then, we will enjoy our weekends and plan for a wedding.
Cancer is so limited that:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
I'm feeling positive tonight!
Sue
Instead of participants shaving hair off this year, they are currently trying to add some to their faces. Participants are sporting facial hair, wearing pins that say, "Ask me about my Stache," and trying to raise money so that they remain in the competition. After the first series, five participants will be eliminated. After the second series, ten more will be eliminated. The last series will determine the winners: Most Bushy, Best Effort, Most Original, Best Stache / Face, and Mr. Omaha (whoever raises the most money).
Along with "Stache-for-Cash," special raffles and a jersey auction will take place. On Friday 2/26, LFAC will distribute 2,000 wristbands; and on Saturday 2/27, Methodist Hospital Foundation will distribute 5,000 key chain flashlights for a special lighting ceremony before the game. Brandi Petersen and Jeff Degan will be the emcees again this year. In addition, each game will honor a brain cancer survivor / patient as he/she ceremoniously drops the puck. After last year's $44,000, our sights are set high. The goal is $50,000 this year.
LFAC is set to purchase a Functional MRI (fMRI) for Methodist Hospital. fMRI is becoming the diagnostic method of choice for learning how a normal, diseased, or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.
Physicians perform fMRI to: *examine the anatomy of the brain; *determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping; *help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function; *monitor the growth and function of brain tumors; and
*guide the planning of surgery, radiation therapy, or other surgical treatments for the brain. Although brain tumor patients will definitely benefit, so will other brain trauma patients.
February will be busy and memorable. We will be busy, busy, busy with the fundraiser; and the one weekend UNO is not in town, we will be celebrating Heather and Mike's engagement with a wonderful party. Every weekend will be filled with excitement and energy.
Then March will come and we will head to San Francisco again for another visit with Dr. Chang. Until then, we will enjoy our weekends and plan for a wedding.
Cancer is so limited that:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
I'm feeling positive tonight!
Sue
Wednesday, January 6, 2010
Well, good news for the Roberts' family :) Heather's MRI report came back "stable." We cannot ask for more than that! We are not certain why Heather had issues with her left hand yesterday, which remains somewhat disconcerting, but we will happily take "stable" for now. Amy says Heather's left hand is suffering from the weight of her new "bling." She and Mike are officially engaged - beautiful ring to "seal the deal."
The report has been sent to Dr. Chang, but just to make certain, we also sent the MRI disc to her as well. Can't hurt having two people read it.
Omaha is currently suffering from the coldest and snowiest winter in 60 years! I think I understand the term cabin fever better now than I did before. I want to start so many "things," but I never know if there will be school the following day, so I don't want to take out everything. I should have as we are now missing another day tomorrow.
Again, we have been blessed with good news. I cannot thank people enough for their prayers and support - even when we can't always "see" it; we know it is there, especially when we receive such good news. We are beginning to understand how scary this journey can be - never knowing what little or major "issue" may actually mean something. That's OK. I told Heather she can NEVER ignore any possible signs; we always have to keep on top of it.
Tonight we will all sleep a bit better -
Sue
The report has been sent to Dr. Chang, but just to make certain, we also sent the MRI disc to her as well. Can't hurt having two people read it.
Omaha is currently suffering from the coldest and snowiest winter in 60 years! I think I understand the term cabin fever better now than I did before. I want to start so many "things," but I never know if there will be school the following day, so I don't want to take out everything. I should have as we are now missing another day tomorrow.
Again, we have been blessed with good news. I cannot thank people enough for their prayers and support - even when we can't always "see" it; we know it is there, especially when we receive such good news. We are beginning to understand how scary this journey can be - never knowing what little or major "issue" may actually mean something. That's OK. I told Heather she can NEVER ignore any possible signs; we always have to keep on top of it.
Tonight we will all sleep a bit better -
Sue
Tuesday, January 5, 2010
Stomach Pit
When a mother receives a phone call from her daughter stating that "some symptoms are back," the daily routine comes to an abrupt halt and the pit engulfs in the stomach. I guess I always have the pit, but sometimes it is less noticeable. Right now, it is ready to crawl up my throat and spew from my mouth!
So, tomorrow - Wednesday, January 6 - Heather is scheduled for an unexpected MRI because of her unexpected and certainly unwelcomed symptoms. I'm sitting here deciding what my next move is - to cry or to remain calm. To fight or to prepare. To believe or to question. Well, I have chosen to remain calm, fight the pessimism, and believe that God won't let the MRI be bad news. Our positive beliefs and actions have taken us this far; I refuse to think we are headed in a different direction.
Just received a call - MRI tonight at 5:30. I will keep you posted.
Such an abrupt ending, but I needed to do something other than write about my fears. I needed time to clear my head. I needed time to get back into focus.
We met Heather and Michele at Methodist Hospital for Heather's 5:30 MRI. Unfortunately, we all waited until 6:05 before Heather was called into the room. About 40 minutes later, Heather appeared. The technician could not /would not tell us anything - of course - but I did try to "trick" him into telling us something. He was too good. He did say to make certain we bring in San Fransisco's disc tomorrow morning because the radiologist will need to compare the two. Obviously, that means something is there, but it could be what was there on Dec. 8.
If I have learned anything these past 20 months, I have learned not to predict. First, medical science is unpredictable and most importantly, no one can predict what God has in store for us. Which takes me back to my positive beliefs, actions, and trust in God.
Within the next 12 hours, I believe my fears will be put to rest, we will laugh at our overly concerned behavior, and we will once again be thankful for the strength God has given us.
Sue
So, tomorrow - Wednesday, January 6 - Heather is scheduled for an unexpected MRI because of her unexpected and certainly unwelcomed symptoms. I'm sitting here deciding what my next move is - to cry or to remain calm. To fight or to prepare. To believe or to question. Well, I have chosen to remain calm, fight the pessimism, and believe that God won't let the MRI be bad news. Our positive beliefs and actions have taken us this far; I refuse to think we are headed in a different direction.
Just received a call - MRI tonight at 5:30. I will keep you posted.
Such an abrupt ending, but I needed to do something other than write about my fears. I needed time to clear my head. I needed time to get back into focus.
We met Heather and Michele at Methodist Hospital for Heather's 5:30 MRI. Unfortunately, we all waited until 6:05 before Heather was called into the room. About 40 minutes later, Heather appeared. The technician could not /would not tell us anything - of course - but I did try to "trick" him into telling us something. He was too good. He did say to make certain we bring in San Fransisco's disc tomorrow morning because the radiologist will need to compare the two. Obviously, that means something is there, but it could be what was there on Dec. 8.
If I have learned anything these past 20 months, I have learned not to predict. First, medical science is unpredictable and most importantly, no one can predict what God has in store for us. Which takes me back to my positive beliefs, actions, and trust in God.
Within the next 12 hours, I believe my fears will be put to rest, we will laugh at our overly concerned behavior, and we will once again be thankful for the strength God has given us.
Sue
Saturday, December 12, 2009
"Status Quo" = Good News
Another trip to San Fransisco, and we were blessed with another "status quo" report. At this time, Heather's tumor does not appear to be growing and appears to be surrounded by dead cells. We cannot ask for any better news.
We had a discussion with Dr. Chang regarding the vaccine that seems to be doing well in trials. Currently, UCSF is participating in a trial using the vaccine. However, unless Heather needs another surgery someday, she will not be able to use the vaccine because the vaccine is made from the patient's tumor. In addition, there is only one direction that Heather's tumor could grow for her to even be eligible for surgery. So, no growth = no surgery anyway. I'm all about keeping it "status quo."
We return in two months for another MRI and check-up. Someday we will have to wait three months between visits, but I don't know if we will ever stretch it longer than that - at least not for a LONG time from now. I know how blessed we are that Heather is doing well right now. I know others who are not doing as well, and my heart aches for them. But no one is without hope, and I believe researchers are making strides in the fight against brain cancer.
Heather has taken a little break from wedding plans, but we will start again after the holidays. Speaking of holidays, we are almost ready. I started my shopping with a specific list and before Thanksgiving, so I am almost finished. The house is decorated, the presents are wrapped and under the tree, and a few treats have been made and are in the freezer. I feel good :) I love the holidays - the lights, the music, the shopping, the decorating - everything! And getting good news is always a blessing.
Amy comes home late on December 23 and leaves on December 27, so our family will once again be together for the holidays. No matter how many gifts are under the tree, the best gift of all (other than health) is family being together. We truly appreciate and honor our gift of family and good news for this holiday season. From our family to yours, we wish you a happy and safe season of love, peace, and togetherness.
Sue
We had a discussion with Dr. Chang regarding the vaccine that seems to be doing well in trials. Currently, UCSF is participating in a trial using the vaccine. However, unless Heather needs another surgery someday, she will not be able to use the vaccine because the vaccine is made from the patient's tumor. In addition, there is only one direction that Heather's tumor could grow for her to even be eligible for surgery. So, no growth = no surgery anyway. I'm all about keeping it "status quo."
We return in two months for another MRI and check-up. Someday we will have to wait three months between visits, but I don't know if we will ever stretch it longer than that - at least not for a LONG time from now. I know how blessed we are that Heather is doing well right now. I know others who are not doing as well, and my heart aches for them. But no one is without hope, and I believe researchers are making strides in the fight against brain cancer.
Heather has taken a little break from wedding plans, but we will start again after the holidays. Speaking of holidays, we are almost ready. I started my shopping with a specific list and before Thanksgiving, so I am almost finished. The house is decorated, the presents are wrapped and under the tree, and a few treats have been made and are in the freezer. I feel good :) I love the holidays - the lights, the music, the shopping, the decorating - everything! And getting good news is always a blessing.
Amy comes home late on December 23 and leaves on December 27, so our family will once again be together for the holidays. No matter how many gifts are under the tree, the best gift of all (other than health) is family being together. We truly appreciate and honor our gift of family and good news for this holiday season. From our family to yours, we wish you a happy and safe season of love, peace, and togetherness.
Sue
Tuesday, December 1, 2009
LFAC Is Spending Some Money
After another successful Monster Bash and another successful Pampered Chef Open House, Leap-for-a-Cure is finally going to spend money! Several doctors, including Dr. Long - Heather's neurosurgeon - have asked to purchase an fMRI (Functional MRI). This technology helps to further examine the anatomy of the brain and helps to determine precisely which part of the brain is handling critical functions such as thought, speech, movement, and sensation, which is also referred to as brain mapping. The fMRI monitors the growth and function of brain tumors and helps to guide the planning of surgery, radiation therapy, or other treatments for the brain. Before Heather's first surgery, she had to go to another hospital for this procedure. Although the purchase decision is not final, the doctors are working together to purchase a machine to help with brain tumors.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
Wednesday, November 4, 2009
Chemo Over, Monster Bash, What Next? Oh My!
Heather is officially finished with her chemo treatments for now. The standard treatment is 6 months on the Temador schedule after 6 weeks of radiation, and Heather lasted 10 months on it before her body said, "No more!" She is thrilled; she now saves $400 a month, and she won't have the infusions on Day 1 and Day 3 of her cycle and she won't have side effects. Both Jon and I are so happy for her, but taking her off something that has worked is very difficult for us as well. Heather's cancer has been treated aggressively, so I don't think we can ask for more - right now anyway. We return to UCSF December 8 for her first MRI/MRS not on chemo.
What next? As for Heather's treatment plan, we just wait. I don't think there are any plans to do anything right now unless something inside her little head starts to change. Right now her blood count is good; her MRI looks good (still a tumor, but it isn't growing); her life is good. She can sit back and enjoy spending her parents money on her wedding instead of medical bills. Even Jon and I like that :)
Monster Bash - what fun! Even though the weather worked against us, people supported the cause. Pictures will be posted on the site soon. It was a good night of fun, fabulous music, awesome people, and yummy food. What more could we ask for? Costumes were quite detailed and unique. I think almost half of the guests worse costumes, which added to the atmosphere.
Every year I meet wonderful people who have been stricken with brain cancer in some form - either as a care giver, a friend, a spouse, or a patient. I am also amazed at the strength these people have. This year, two people who lost their husbands to brain cancer donated time and support to the evening. Susan M. lost her husband almost three years ago to GBM; and Joey E. lost her young husband last spring to it as well. In fact, Joey's husband is the young man who went to elementary school with Heather. Also in attendance were four people who are currently surviving brain cancer: Heather, Courtney, Matt, and Ryan. They are the faces of those who are winning the battle. And of course, there were moms, wives, fathers, and so many friends who all supported an evening of fun, laughter, music, and a costume contest :) With the 50 plus raffle prizes and the silent auction items, we were busy all night. Old Chicago certainly knows how to host an event! Chasing Daylight knows how to play for an event! And, Mark Kresl knows how to photograph an event! We had it all!
What next? First, we are planning another November "national" Pampered Chef party. Michele needs to get busy with that ASAP! In January and February, LFAC will host another fundraiser with the UNO hockey team. More on that later. Spring time? We hope to add Hy-Vee to our list of supporters and have a car show in June. Then it will be back to Wear-Gray-for-a Day and Monster Bash.
So, with Heather in-check, our focus returns to our good friend Bob. He has to remain positive as he continues his battle with lymphoma. He beat it once four years ago, and now his enemy returned for Round 2. This time, it is stronger, so Bob has to fight harder. We are all praying and remaining positive that he will continue to light the way for Heather and she for him. She looks to him for her strength to beat the odds, so their tag-team is a unit. Not a night falls without some serious praying in our home, and some nights long conversations with Him go well into the night.
Once again I end with hope for the future, blessings for the present, and learning from the past.
Men may give up, doctors may give up, but God never gives up. We must remember never to give up!
What next? As for Heather's treatment plan, we just wait. I don't think there are any plans to do anything right now unless something inside her little head starts to change. Right now her blood count is good; her MRI looks good (still a tumor, but it isn't growing); her life is good. She can sit back and enjoy spending her parents money on her wedding instead of medical bills. Even Jon and I like that :)
Monster Bash - what fun! Even though the weather worked against us, people supported the cause. Pictures will be posted on the site soon. It was a good night of fun, fabulous music, awesome people, and yummy food. What more could we ask for? Costumes were quite detailed and unique. I think almost half of the guests worse costumes, which added to the atmosphere.
Every year I meet wonderful people who have been stricken with brain cancer in some form - either as a care giver, a friend, a spouse, or a patient. I am also amazed at the strength these people have. This year, two people who lost their husbands to brain cancer donated time and support to the evening. Susan M. lost her husband almost three years ago to GBM; and Joey E. lost her young husband last spring to it as well. In fact, Joey's husband is the young man who went to elementary school with Heather. Also in attendance were four people who are currently surviving brain cancer: Heather, Courtney, Matt, and Ryan. They are the faces of those who are winning the battle. And of course, there were moms, wives, fathers, and so many friends who all supported an evening of fun, laughter, music, and a costume contest :) With the 50 plus raffle prizes and the silent auction items, we were busy all night. Old Chicago certainly knows how to host an event! Chasing Daylight knows how to play for an event! And, Mark Kresl knows how to photograph an event! We had it all!
What next? First, we are planning another November "national" Pampered Chef party. Michele needs to get busy with that ASAP! In January and February, LFAC will host another fundraiser with the UNO hockey team. More on that later. Spring time? We hope to add Hy-Vee to our list of supporters and have a car show in June. Then it will be back to Wear-Gray-for-a Day and Monster Bash.
So, with Heather in-check, our focus returns to our good friend Bob. He has to remain positive as he continues his battle with lymphoma. He beat it once four years ago, and now his enemy returned for Round 2. This time, it is stronger, so Bob has to fight harder. We are all praying and remaining positive that he will continue to light the way for Heather and she for him. She looks to him for her strength to beat the odds, so their tag-team is a unit. Not a night falls without some serious praying in our home, and some nights long conversations with Him go well into the night.
Once again I end with hope for the future, blessings for the present, and learning from the past.
Men may give up, doctors may give up, but God never gives up. We must remember never to give up!
Saturday, October 10, 2009
Good News; Scary News
Good news is always easy to handle - usually. The good news is that Heather's scans this month are again stable. Her tumor is not active and the area around the tumor looks good. The Temador has done its job, which has provided us security. However, Heather's body is starting to react to the chemo. Each month her white cell counts and platelets dip lower. Her October chemo had to be postponed. Therefore, Dr. Chang feels it is time to stop the chemo. WAIT! Stop what is working? To me, that is scary. I told Dr. Chang, "I'm scared to have her stop chemo." Dr. Chang's simple and firm reply: "I'm scared to have her stay on it."
The compromise? Monitor Heather's blood weekly and make the final decision in 4 weeks. Of course, Heather is elated to be finished, and who can blame her. But I love my security blanket. The next step if she is finished with chemo is to continue MRIs and MRSs every 2 months and then slip into every 3 months. What? Another step away from another security? Even Dr. Chang doesn't like losing that security, but eventually it is what we want - I guess. It means good news, not bad. But it is scary.
Interestingly, we again met someone by chance who knows about brain cancer and Dr. Chang. We were looking for the vision clinic for a future appointment for my brother-in-law (which is another scary situation) and we (my sister and Heather and I) were somewhat lost at UCSF. We finally found the ocular-oncologist's office but could not find our way out. We bumped into a nice woman who helped us out of the maze. As we were walking, she asked the usual questions and found out we had originally seen Dr. Chang. She shared with us that Dr. Chang kept her husband alive for 17 years with Anaplastic Astrocytoma. I did not ask when her husband died, but I did hear "alive for 17 years"! In 17 more years, I firmly believe there will be a cure and Heather will be BEAT this ugly monster!
Speaking of "monster," we are prepping for the 2nd annual Monster Bash. We are so pleased to have Old Chicago (Rock Bottom in some areas of the country) host this event and to have Chasing Daylight provide the live entertainment. Thursday, October 29 will be a big night for Leap-for-a-Cure. I will certainly be writing about it next blog. If you are interested in attending, just go to the "events" tab on our website for more information.
Our church - Hope Presbyterian - will be having a special cancer service on Sunday, October 18. We were honored that Pastor Dave asked for our input. I know the services will focus on hope and miracle, which is exactly what cancer patients and the families need.
This summer Dr. Chang has agreed to come to Omaha for a conference. She will be presenting to two different audiences: one for doctors and one for lay people. I will be working with Methodist Hospital and Estabrook Cancer Center for this BIG event! More on that later. But what brought a gulp and some tears was when Dr. Chang asked that we schedule it around Heather's wedding so that she can attend the wedding. If I could only begin to share my gratitude to and admiration for Dr. Chang . . . I will NEVER forget her and will ALWAYS admire her conviction to curing / treating brain cancer.
Until next entry, I wish everyone health and happiness. Today, I leave you with a poem that is fitting for all who have been diagnosed with cancer:
Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.
What chance does cancer have with so many limitations?
The compromise? Monitor Heather's blood weekly and make the final decision in 4 weeks. Of course, Heather is elated to be finished, and who can blame her. But I love my security blanket. The next step if she is finished with chemo is to continue MRIs and MRSs every 2 months and then slip into every 3 months. What? Another step away from another security? Even Dr. Chang doesn't like losing that security, but eventually it is what we want - I guess. It means good news, not bad. But it is scary.
Interestingly, we again met someone by chance who knows about brain cancer and Dr. Chang. We were looking for the vision clinic for a future appointment for my brother-in-law (which is another scary situation) and we (my sister and Heather and I) were somewhat lost at UCSF. We finally found the ocular-oncologist's office but could not find our way out. We bumped into a nice woman who helped us out of the maze. As we were walking, she asked the usual questions and found out we had originally seen Dr. Chang. She shared with us that Dr. Chang kept her husband alive for 17 years with Anaplastic Astrocytoma. I did not ask when her husband died, but I did hear "alive for 17 years"! In 17 more years, I firmly believe there will be a cure and Heather will be BEAT this ugly monster!
Speaking of "monster," we are prepping for the 2nd annual Monster Bash. We are so pleased to have Old Chicago (Rock Bottom in some areas of the country) host this event and to have Chasing Daylight provide the live entertainment. Thursday, October 29 will be a big night for Leap-for-a-Cure. I will certainly be writing about it next blog. If you are interested in attending, just go to the "events" tab on our website for more information.
Our church - Hope Presbyterian - will be having a special cancer service on Sunday, October 18. We were honored that Pastor Dave asked for our input. I know the services will focus on hope and miracle, which is exactly what cancer patients and the families need.
This summer Dr. Chang has agreed to come to Omaha for a conference. She will be presenting to two different audiences: one for doctors and one for lay people. I will be working with Methodist Hospital and Estabrook Cancer Center for this BIG event! More on that later. But what brought a gulp and some tears was when Dr. Chang asked that we schedule it around Heather's wedding so that she can attend the wedding. If I could only begin to share my gratitude to and admiration for Dr. Chang . . . I will NEVER forget her and will ALWAYS admire her conviction to curing / treating brain cancer.
Until next entry, I wish everyone health and happiness. Today, I leave you with a poem that is fitting for all who have been diagnosed with cancer:
Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.
What chance does cancer have with so many limitations?
Monday, September 21, 2009
What Next? Or, Where to Begin?
So much has happened in the past four weeks that I'm not certain I can write in a logical manner. All has happened since my father-in-law's passing or started during his illness.
Heather and Mike have decided to get married. We are thrilled that they will be taking the next step in their relationship. They have certainly shared more intimate challenges than many couples have to face for years and years, so I believe they are a strong couple. Planning a "simple" wedding is starting to be fun and certainly takes our minds off the brain cancer. These two deserve something fun and memorable and positive to plan. Date will either be July 31 or August 7. We are waiting for another couple to decide on their date at the UNO Alumni House. Mike and Heather are 2nd in line for July 31. We should know by Wednesday. Next? Heather has chosen her wedding gown and attendants' dresses - at least her first choice. Flowers: Gerber Daisies. The colors should be so bright and hopeful.
During all this excitement, we have been working on Monster Bash, which is Thursday, October 29 at the downtown Old Chicago Restaurant. Check out the "events" link on our website for more information. Jon has been working hard to obtain Silent Auction items, and he has done well. In addition, we obtained free garage parking for the evening when Monster Bash attendees present a voucher. The band "Chasing Daylight" will be playing; and good food, a special brewed beer, costume contest, and raffle prizes will be available. We are so excited for our 2nd Annual Monster Bash.
On October 4, Bike Masters at 129/Fort will be hosting a bike ride in memory of Seth Embrey, who lost his battle with brain cancer last spring. Interestingly, Seth and Heather went to elementary school together. The bike ride is a 100, 62, or 30 mile ride. Entry is free, but LFAC donations are suggested. LFAC is honored to support another meaningful event for brain cancer awareness. For more information, see the "events" link on our website.
"Wear Gray for a Day" celebrated its second year on Friday, October 18. From Omaha to Atlanta to several other areas in the United States, the event was honored. Many cancer groups and organizations tweeted about this event for weeks prior. I heard from one person today who has asked to be become involved after her friend wore gray on Friday. Another business contacted us about supporting our cause. Time will tell how many people may have been touched, but one person more is a step forward.
Heather has been feeling fairly well. However, her platelets and white cell counts were too low last week for her chemo. So, she was supposed to try again today, but she came down with the flu late Saturday night. She was sick all day Sunday and began running a steady fever early Sunday night. After a phone call to the oncologist, we were off to the ER. SIX HOURS later (4:30 am to be exact) we were home. She received a Nupergen shot, another antibiotic, and Tamiflu - but no pneumonia. They tried to do a flu test on her - tube inserted through the nose to goodness knows where - but Heather did not fare too well. We decided that we did not care what flu she has since all Type As are treated the same. The fever remains, so no work for a few days. She must remain fever free for 48 hours. I did not feel so great when the medical personnel looked at me and said, "You will be getting this." We are all on Tamiflu.
Lastly, my friend wrote on my facebook: Stop asking, "What next?" I think I am going to adhere to her advice. My sister's husband, Matt, is undergoing testing to determine what is going on with his eyes. He has been told anything from an infection to an autoimmune disease to ocular lymphoma. The infection has been almost 100% ruled out, but the other two remain the focus. As Matt said, "I don't know what one I'm hoping for." This situation has been very stressful for my sister and her husband - obviously. Waiting seems forever, but in the medical world, "it" has been moving quickly. Five weeks has seemed like five months. Now they have to wait another two week for all tests to be analyzed and reported. Heather and I stay with them while we are in San Fransisco, and now Matt is also going to UCSF. In fact, his doctor is the office directly below Heather's doctor.
I think that is about "it" for now. As I mentioned, Heather and I head to SF on Tuesday, October 6; her appointments are on October 7; and we return on October 8. I have several new questions to ask as we begin to think about Heather ending her chemo in December. I think it will be bittersweet. Ending the chemo and beginning a normal life again, but also ending the chemo that has kept the tumor from growing - as I said, "bittersweet."
Updated Information:
An experimental drug derived from cottonseed proved effective in hindering the growth of the type of brain cancer that caused Ted Kennedy’s death. The drug completed Phase II clinical trials under the direction of researchers at the University of Alabama at Birmingham (UAB).
The American Cancer Society estimates that 21,000 Americans are diagnosed each year with brain tumors. Of these about 10,000 are glioblastomas. A glioma is any tumor that forms in the glial brain cells, the most abundant cells in the central nervous system. Glioma is not a specific type of cancer but a category of brain tumor that includes glioblastoma multiforme, astrocytomas, oligodendrogliomas, and ependymomas.
Heather and Mike have decided to get married. We are thrilled that they will be taking the next step in their relationship. They have certainly shared more intimate challenges than many couples have to face for years and years, so I believe they are a strong couple. Planning a "simple" wedding is starting to be fun and certainly takes our minds off the brain cancer. These two deserve something fun and memorable and positive to plan. Date will either be July 31 or August 7. We are waiting for another couple to decide on their date at the UNO Alumni House. Mike and Heather are 2nd in line for July 31. We should know by Wednesday. Next? Heather has chosen her wedding gown and attendants' dresses - at least her first choice. Flowers: Gerber Daisies. The colors should be so bright and hopeful.
During all this excitement, we have been working on Monster Bash, which is Thursday, October 29 at the downtown Old Chicago Restaurant. Check out the "events" link on our website for more information. Jon has been working hard to obtain Silent Auction items, and he has done well. In addition, we obtained free garage parking for the evening when Monster Bash attendees present a voucher. The band "Chasing Daylight" will be playing; and good food, a special brewed beer, costume contest, and raffle prizes will be available. We are so excited for our 2nd Annual Monster Bash.
On October 4, Bike Masters at 129/Fort will be hosting a bike ride in memory of Seth Embrey, who lost his battle with brain cancer last spring. Interestingly, Seth and Heather went to elementary school together. The bike ride is a 100, 62, or 30 mile ride. Entry is free, but LFAC donations are suggested. LFAC is honored to support another meaningful event for brain cancer awareness. For more information, see the "events" link on our website.
"Wear Gray for a Day" celebrated its second year on Friday, October 18. From Omaha to Atlanta to several other areas in the United States, the event was honored. Many cancer groups and organizations tweeted about this event for weeks prior. I heard from one person today who has asked to be become involved after her friend wore gray on Friday. Another business contacted us about supporting our cause. Time will tell how many people may have been touched, but one person more is a step forward.
Heather has been feeling fairly well. However, her platelets and white cell counts were too low last week for her chemo. So, she was supposed to try again today, but she came down with the flu late Saturday night. She was sick all day Sunday and began running a steady fever early Sunday night. After a phone call to the oncologist, we were off to the ER. SIX HOURS later (4:30 am to be exact) we were home. She received a Nupergen shot, another antibiotic, and Tamiflu - but no pneumonia. They tried to do a flu test on her - tube inserted through the nose to goodness knows where - but Heather did not fare too well. We decided that we did not care what flu she has since all Type As are treated the same. The fever remains, so no work for a few days. She must remain fever free for 48 hours. I did not feel so great when the medical personnel looked at me and said, "You will be getting this." We are all on Tamiflu.
Lastly, my friend wrote on my facebook: Stop asking, "What next?" I think I am going to adhere to her advice. My sister's husband, Matt, is undergoing testing to determine what is going on with his eyes. He has been told anything from an infection to an autoimmune disease to ocular lymphoma. The infection has been almost 100% ruled out, but the other two remain the focus. As Matt said, "I don't know what one I'm hoping for." This situation has been very stressful for my sister and her husband - obviously. Waiting seems forever, but in the medical world, "it" has been moving quickly. Five weeks has seemed like five months. Now they have to wait another two week for all tests to be analyzed and reported. Heather and I stay with them while we are in San Fransisco, and now Matt is also going to UCSF. In fact, his doctor is the office directly below Heather's doctor.
I think that is about "it" for now. As I mentioned, Heather and I head to SF on Tuesday, October 6; her appointments are on October 7; and we return on October 8. I have several new questions to ask as we begin to think about Heather ending her chemo in December. I think it will be bittersweet. Ending the chemo and beginning a normal life again, but also ending the chemo that has kept the tumor from growing - as I said, "bittersweet."
Updated Information:
An experimental drug derived from cottonseed proved effective in hindering the growth of the type of brain cancer that caused Ted Kennedy’s death. The drug completed Phase II clinical trials under the direction of researchers at the University of Alabama at Birmingham (UAB).
The American Cancer Society estimates that 21,000 Americans are diagnosed each year with brain tumors. Of these about 10,000 are glioblastomas. A glioma is any tumor that forms in the glial brain cells, the most abundant cells in the central nervous system. Glioma is not a specific type of cancer but a category of brain tumor that includes glioblastoma multiforme, astrocytomas, oligodendrogliomas, and ependymomas.
Sunday, August 30, 2009
RIP
It's been a month since I have added to this blog, and a lot has happened since then. First, Heather is fine. She has the monthly low white cell count followed with her Neupogen shot, or as in some months - shots. She is getting so much better getting those. The last two months she has begun to battle low platlet counts, but she always seems to get those back up. If all goes well, she only has four more months of Temador. However, I have now begun to worry about the "what next?" phase of our life. Heather's next visit with Dr. Chang is October 7, so we will once again be waiting with baited breath for good news.
With Ted Kennedy's passing, a new surge in brain cancer awareness has risen. Our "Wear Gray for a Day" event has taken a life of its own - from Omaha, to St. Louis, to Atlanta, to many other areas, September 18 may see a lot of gray everywhere! Proudly wearing gray and letting people know why is what we need to spread the word that awareness and research is a must for brain cancer. No insurance plan in the world is good enough if a cure is not found.
Instead of ending with brain cancer information, I am going to end with a reflection. This past month has brought our family some sadness. Jon's father passed away on Saturday, August 29 after brief complications from various aging issues. The weeks have been stressful for the family as we tried to provide comfort for the pain and reassurance for the unknown. His father has always been "fiesty," and he lived that until the very end. We will all miss the family patriarch and one of Heather's constant supporters. He loved her - and all his grandchildren - very much. RIP Charles Marvin Roberts!
With Ted Kennedy's passing, a new surge in brain cancer awareness has risen. Our "Wear Gray for a Day" event has taken a life of its own - from Omaha, to St. Louis, to Atlanta, to many other areas, September 18 may see a lot of gray everywhere! Proudly wearing gray and letting people know why is what we need to spread the word that awareness and research is a must for brain cancer. No insurance plan in the world is good enough if a cure is not found.
Instead of ending with brain cancer information, I am going to end with a reflection. This past month has brought our family some sadness. Jon's father passed away on Saturday, August 29 after brief complications from various aging issues. The weeks have been stressful for the family as we tried to provide comfort for the pain and reassurance for the unknown. His father has always been "fiesty," and he lived that until the very end. We will all miss the family patriarch and one of Heather's constant supporters. He loved her - and all his grandchildren - very much. RIP Charles Marvin Roberts!
Friday, August 7, 2009
Cure Cancer!
Once again we are blessed with good news. Heather's tumor has not grown and the scar tissue is not as enhanced as before. Dr. Chang said, "This scan is the best I could hope for." We will take it!
For the first time I did not go to San Fransisco with Heather; Jon went instead. School has resumed and I had some meetings I should not miss - new technology that is generations ahead of me! Anyway, even though I knew she was safe with Jon and my sister, I wanted to be there. Once I was on speaker phone and heard Dr. Chang's message, all was good. Then I wanted to be there to help celebrate. Oh well. . .
The plan remains as last time: Temador through December. I am very nervous for her to go off Temador because things are going so well on it. In fact, she handled her tiredness better this time I think. She will see Dr. Chang in October, December, February, and then every three months instead of two if all goes well. That will be another adjustment for us.
In the meantime, we continue to pray for new advancements in treating this aggressive form of brain cancer. I know there are studies and trials all the time, but we need one that WORKS! So I'm thinking, a cure for ALL cancers would be awesome! Never settle, so let's go for the best.
Heather likes her new job and the people with whom she works. She is so lucky to have a job and to work with such a great group of doctors, nurses, and medical support staff. She feels at home.
Some other exciting news: Old Chicago (downtown) is sponsoring Monster Bash Thursday, October 29. Doors open at 6:30, $20 per person, appetizers, live band, costume contest, raffles, and silent auction - it should be tons of fun! In addition, instead of drink tickets this year, we are offering a special brew (made just for Monster Bash) and it will be free! Can't beat that offer. More information will be posted on the "events" link on the website soon. Old Chicago is preparing posters and t-shirts.
Other good news: "Wear Gray for a Day" on Friday, September 18. If your business would like to participate, let me know. LFAC will provide stickers to wear and raffle prizes for the office. Someone in Atlanta is promoting this same event, so it's our first step for a national effort. WEAR GRAY on September 18 and show your support for brain cancer awareness!
Again, we are so excited about Heather's report. She is fighting to win this war, and I think she will succeed. Have you tried to cross her before? I don't think even brain cancer wants to do that! Thank you for all your prayers; please keep them coming. I believe in the power of prayer, and I believe it is working for Heather. And as you are praying for her, please add Bob Sitzman to your list. He is currently fighting his battle with recurring lymphoma, and he needs the power of pray to work for him too. Pray for a cure for cancer.
In closing, I find a spark of hope in the following:
The different ways that patients respond to drugs make brain cancer hard to treat, but a new way to analyze brain tumors could help pinpoint which patients will benefit from a newly-approved drug.Bronnie McNabb underwent surgery, radiation and chemotherapy to fight brain tumors, but he always developed new ones. Since taking the new drug Avastin, however, his tumors are gone. "This is probably the best I have felt since this (cancer) first came on," McNabb said.
Although Avastin worked for McNabb, about half of patients with recurring cancer don't respond to it. A new way to analyze brain scans, developed by researchers at the University of California-Los Angeles, could help determine which tumors might respond to Avastin. Some glioblastoma tumors – the deadliest form of brain cancer – are more solid, while others contain more moving water, according to researchers' findings published in the July issue of Radiology.
"What we're looking at is the movement of water molecules within the tumor," explained Dr. Whitney Pope, director of radiology resident research at UCLA. "And what we've found is that tumors that have a lot of water molecules due to the death of cells within the tumor, those are tumors that respond well to Avastin."
Glioblastoma strikes about 12,000 Americans a year. When every day counts, knowing if tumors will respond to certain drugs is critical. "I've gone several months beyond what they told me would be my outside length of time to survive," McNabb said.
Researchers hope that one day they'll be able to tell exactly which tumors will respond to Avastin and other cancer-fighting drugs.
For the first time I did not go to San Fransisco with Heather; Jon went instead. School has resumed and I had some meetings I should not miss - new technology that is generations ahead of me! Anyway, even though I knew she was safe with Jon and my sister, I wanted to be there. Once I was on speaker phone and heard Dr. Chang's message, all was good. Then I wanted to be there to help celebrate. Oh well. . .
The plan remains as last time: Temador through December. I am very nervous for her to go off Temador because things are going so well on it. In fact, she handled her tiredness better this time I think. She will see Dr. Chang in October, December, February, and then every three months instead of two if all goes well. That will be another adjustment for us.
In the meantime, we continue to pray for new advancements in treating this aggressive form of brain cancer. I know there are studies and trials all the time, but we need one that WORKS! So I'm thinking, a cure for ALL cancers would be awesome! Never settle, so let's go for the best.
Heather likes her new job and the people with whom she works. She is so lucky to have a job and to work with such a great group of doctors, nurses, and medical support staff. She feels at home.
Some other exciting news: Old Chicago (downtown) is sponsoring Monster Bash Thursday, October 29. Doors open at 6:30, $20 per person, appetizers, live band, costume contest, raffles, and silent auction - it should be tons of fun! In addition, instead of drink tickets this year, we are offering a special brew (made just for Monster Bash) and it will be free! Can't beat that offer. More information will be posted on the "events" link on the website soon. Old Chicago is preparing posters and t-shirts.
Other good news: "Wear Gray for a Day" on Friday, September 18. If your business would like to participate, let me know. LFAC will provide stickers to wear and raffle prizes for the office. Someone in Atlanta is promoting this same event, so it's our first step for a national effort. WEAR GRAY on September 18 and show your support for brain cancer awareness!
Again, we are so excited about Heather's report. She is fighting to win this war, and I think she will succeed. Have you tried to cross her before? I don't think even brain cancer wants to do that! Thank you for all your prayers; please keep them coming. I believe in the power of prayer, and I believe it is working for Heather. And as you are praying for her, please add Bob Sitzman to your list. He is currently fighting his battle with recurring lymphoma, and he needs the power of pray to work for him too. Pray for a cure for cancer.
In closing, I find a spark of hope in the following:
The different ways that patients respond to drugs make brain cancer hard to treat, but a new way to analyze brain tumors could help pinpoint which patients will benefit from a newly-approved drug.Bronnie McNabb underwent surgery, radiation and chemotherapy to fight brain tumors, but he always developed new ones. Since taking the new drug Avastin, however, his tumors are gone. "This is probably the best I have felt since this (cancer) first came on," McNabb said.
Although Avastin worked for McNabb, about half of patients with recurring cancer don't respond to it. A new way to analyze brain scans, developed by researchers at the University of California-Los Angeles, could help determine which tumors might respond to Avastin. Some glioblastoma tumors – the deadliest form of brain cancer – are more solid, while others contain more moving water, according to researchers' findings published in the July issue of Radiology.
"What we're looking at is the movement of water molecules within the tumor," explained Dr. Whitney Pope, director of radiology resident research at UCLA. "And what we've found is that tumors that have a lot of water molecules due to the death of cells within the tumor, those are tumors that respond well to Avastin."
Glioblastoma strikes about 12,000 Americans a year. When every day counts, knowing if tumors will respond to certain drugs is critical. "I've gone several months beyond what they told me would be my outside length of time to survive," McNabb said.
Researchers hope that one day they'll be able to tell exactly which tumors will respond to Avastin and other cancer-fighting drugs.
Friday, July 24, 2009
On August 5, Heather heads to San Francisco again for another appointment with Dr. Chang. As always, now is the time that I start to think too much about it - this time even more. For the first time, I won't be going with Heather. And, it is already driving me crazy. However, Jon will be with her the entire time, so she will be in good hands, but I want to be there too. I don't feel I can miss the first two days of school without getting far behind before we even start, so I opted out this trip.
Heather's white cell count was low again; in fact, the lowest for her yet. But the nupergen shots seem to work so far, so the chemo can continue. Her red count is also down, but that just means she will sleep more. Today she had a problem with her infusion - arm swelling from vein popping - so she was a sad sack for a while. But, the trooper that she is - off to work after a quick recuperation at the oncology infusion site.
Speaking of off to work, she has been in training for about two weeks now. I think she will be "cut loose" soon to tackle it on her own. The best part of this job? She works with the two doctors who I continue to praise for saving her life: Dr. Denman and Dr. Daryani.
While it is sometimes easy to slip into a routine, we are always reminded of the fight so many people are battling every day. Heather is one of millions who have a life-threatening disease, and one of thousands who is battling brain cancer. From young to old, cancer of all types attacks its victims. Brain cancer has had few new treatment developments in over a decade, so it is "our" turn to see some new advancements in diagnosis and treatment.
As for LFAC, we are in the beginning stages of our 2009 - 2010 fundraising efforts. WEAR GRAY FOR A DAY is September 18. Anyone wanting a sticker to wear for the day, please contact me (sue.leapforacure@gmail.com or jonroberts402@msn.com). We will send the sticker and information to anyone who is interested in participating. Monster Bash is being planned as well. Soon, more information will be posted on the events link. Another UNO Hockey event is in the works - who can we get to shave his / her head????? The car show crashed this year, but I think we can get one going for June 2010. And, a bike ride is being planned for fall 2010! We won't stop until a cure is found.
Instead of posting brain cancer information this time, I am going to close with a link that has a ton of information / stories about brain cancer: http://www.greyribboncrusade.org/ LFAC is a proud member.
Heather's white cell count was low again; in fact, the lowest for her yet. But the nupergen shots seem to work so far, so the chemo can continue. Her red count is also down, but that just means she will sleep more. Today she had a problem with her infusion - arm swelling from vein popping - so she was a sad sack for a while. But, the trooper that she is - off to work after a quick recuperation at the oncology infusion site.
Speaking of off to work, she has been in training for about two weeks now. I think she will be "cut loose" soon to tackle it on her own. The best part of this job? She works with the two doctors who I continue to praise for saving her life: Dr. Denman and Dr. Daryani.
While it is sometimes easy to slip into a routine, we are always reminded of the fight so many people are battling every day. Heather is one of millions who have a life-threatening disease, and one of thousands who is battling brain cancer. From young to old, cancer of all types attacks its victims. Brain cancer has had few new treatment developments in over a decade, so it is "our" turn to see some new advancements in diagnosis and treatment.
As for LFAC, we are in the beginning stages of our 2009 - 2010 fundraising efforts. WEAR GRAY FOR A DAY is September 18. Anyone wanting a sticker to wear for the day, please contact me (sue.leapforacure@gmail.com or jonroberts402@msn.com). We will send the sticker and information to anyone who is interested in participating. Monster Bash is being planned as well. Soon, more information will be posted on the events link. Another UNO Hockey event is in the works - who can we get to shave his / her head????? The car show crashed this year, but I think we can get one going for June 2010. And, a bike ride is being planned for fall 2010! We won't stop until a cure is found.
Instead of posting brain cancer information this time, I am going to close with a link that has a ton of information / stories about brain cancer: http://www.greyribboncrusade.org/ LFAC is a proud member.
Friday, July 3, 2009
Good News is Sometimes "Relative"
Heather finished her June chemo, and she actually handled it quite well. Her white blood cell count was a bit low again, so another shot. The shots make her bones ache, so her back suffered a bit. However, it is now Friday - 5 days from last chemo pill and 4 days from last shot. She seems to have managed both, but she is tired (slept until 11:00 this morning!).
Her left side continues to be a bit weaker - a bit less coordinated? - than her right side. As she and I were walking the other night, her dog Sky started running from firework noises. Heather tried to run - OK, it was funny in a sick way - but she looked something like the Hunchback of Norte Dame. Thank goodness she kept it all under control!
Her good news is that she got a job! She begins the paperwork on Monday, July 6 with training to follow. I know she is excited about where she will be working, but the pay is low. So, she has started free-lancing and seems to enjoy it so far. We will see.
Our dear friend Bob, whose situation was noted in my last entry, finally received his updated cancer information. Again, good news is relative. His lymphoma is in his stomach and right kidney. Yes, it could be worse; for that we are all grateful. However, it could be better; for that we are sad. Our entire "clan" will be there supporting Bob and Robyn.
As July 4 approaches tomorrow, we celebrate our independence and once again thank all past, present, and future military personnel who protect it.
Brain Cancer Information: Brain tumors are unique because they occur in the skull -- a confined space with rigid walls. A brain tumor takes up space normally allocated to the brain. As the tumor continues to grow, it pushes aside or compresses the brain. This can cause a build up of pressure in the skull that leads to symptoms such as headaches, seizures and strokes. Brain tumor treatment is designed to eliminate the tumor or reduce tumor size, thus allowing the surrounding brain to resume its normal functions.
Her left side continues to be a bit weaker - a bit less coordinated? - than her right side. As she and I were walking the other night, her dog Sky started running from firework noises. Heather tried to run - OK, it was funny in a sick way - but she looked something like the Hunchback of Norte Dame. Thank goodness she kept it all under control!
Her good news is that she got a job! She begins the paperwork on Monday, July 6 with training to follow. I know she is excited about where she will be working, but the pay is low. So, she has started free-lancing and seems to enjoy it so far. We will see.
Our dear friend Bob, whose situation was noted in my last entry, finally received his updated cancer information. Again, good news is relative. His lymphoma is in his stomach and right kidney. Yes, it could be worse; for that we are all grateful. However, it could be better; for that we are sad. Our entire "clan" will be there supporting Bob and Robyn.
As July 4 approaches tomorrow, we celebrate our independence and once again thank all past, present, and future military personnel who protect it.
Brain Cancer Information: Brain tumors are unique because they occur in the skull -- a confined space with rigid walls. A brain tumor takes up space normally allocated to the brain. As the tumor continues to grow, it pushes aside or compresses the brain. This can cause a build up of pressure in the skull that leads to symptoms such as headaches, seizures and strokes. Brain tumor treatment is designed to eliminate the tumor or reduce tumor size, thus allowing the surrounding brain to resume its normal functions.
Thursday, June 18, 2009
Heather's Turn
Oh, the lessons we learn in life! As many already know, Heather's place of employment closed its doors on Monday, June 8. The people who have been so supportive, so flexible, so everything - Ted and Kathy Baer - could not keep the doors open. Heather felt - and still feels - so sorry for them. They are the hardest working people she knows, other than Bob Sitzman (who will be a part of this in a bit). I think Heather felt as bad for Ted and Kathy as she did for herself not having a job - and of course, INSURANCE! OK - panic for a few days until we found some insurance that she cannot afford, but mom and dad can. Because the doors closed and the business is no longer, COBRA was not an option. Now, Heather is pounding the streets - well, sort of - to find another job. She has had two interviews for the same position and will know next Tuesday if we can celebrate. Otherwise, there has been little to no activity. YIKES.
But, once again, we look at this situation as just another curve ball. Life is filled with them and it is how we react to those balls that make us who we are. Laughter, togetherness, commitment, prayer - they all work wonders, especially in times of need. How does this make it "Heather's Turn"? Jon's best friend in the world and our girls' "second dad" - Bob Sitzman - is going to go through his cancer battle again. He survived mantle cell lymphoma treatment - a chemo cocktail and bone marrow transplant almost 5 years ago. But today, he received the diagnosis that it has returned in his stomach. Bob and Robyn have been there for us and for Heather every step in our journey, much like we were there in Bob's last journey. Bob gave Heather the courage to fight her cancer and the support of knowledge about treatment. It is now Heather's turn to support Bob again, but this time she knows so much more than she did before. He has been her mentor; now she must show him what she has learned from him. Their bond is strong.
Jon and I know so much more this time around as well. Where we may have fallen short last time, we will not fall this time. Morning - noon - night: we will be there for Bob and Robyn!
As Heather begins her next round of chemo on Wednesday, she and Bob will be facing it together. As we pray for Heather's success, we also pray for Bob's. Both of these people deserve to share their special gifts with the world for many years to come.
Now, for some brain cancer information:
Gliomas arise from the "gluey," or supportive tissue of the brain. There are several different types of gliomas. The type of glioma is determined by the cells that give rise to the tumor. Astrocytoma, oligodendroglioma, glioblastoma, oligoastrocytoma are all examples of gliomas. Glioblastoma multiforme, anaplastic astrocytoma, and higher grade oligodendrogliomas are referred to as "high grade gliomas."
But, once again, we look at this situation as just another curve ball. Life is filled with them and it is how we react to those balls that make us who we are. Laughter, togetherness, commitment, prayer - they all work wonders, especially in times of need. How does this make it "Heather's Turn"? Jon's best friend in the world and our girls' "second dad" - Bob Sitzman - is going to go through his cancer battle again. He survived mantle cell lymphoma treatment - a chemo cocktail and bone marrow transplant almost 5 years ago. But today, he received the diagnosis that it has returned in his stomach. Bob and Robyn have been there for us and for Heather every step in our journey, much like we were there in Bob's last journey. Bob gave Heather the courage to fight her cancer and the support of knowledge about treatment. It is now Heather's turn to support Bob again, but this time she knows so much more than she did before. He has been her mentor; now she must show him what she has learned from him. Their bond is strong.
Jon and I know so much more this time around as well. Where we may have fallen short last time, we will not fall this time. Morning - noon - night: we will be there for Bob and Robyn!
As Heather begins her next round of chemo on Wednesday, she and Bob will be facing it together. As we pray for Heather's success, we also pray for Bob's. Both of these people deserve to share their special gifts with the world for many years to come.
Now, for some brain cancer information:
Gliomas arise from the "gluey," or supportive tissue of the brain. There are several different types of gliomas. The type of glioma is determined by the cells that give rise to the tumor. Astrocytoma, oligodendroglioma, glioblastoma, oligoastrocytoma are all examples of gliomas. Glioblastoma multiforme, anaplastic astrocytoma, and higher grade oligodendrogliomas are referred to as "high grade gliomas."
Sunday, June 7, 2009
Blessed Again :)
Our trip to UCSF Medical Center could not have been better - which is relative, I know. Dr. Chang told us that Heather's tumor does not appear to have changed. In addition, the enhanced area around the tumor seems to be smaller than two months ago. With that said, there is always caution involved; however, we are VERY pleased and happy with that information.
Another good piece of information: Heather has only six months of chemo left. We were told by another doctor that some people remain on Temador for 4 - 5 years if their body can handle it. Somehow, the conversation lead us to believe that was the goal for Heather. Anyway, Dr. Chang told us that Heather is being treated aggressively, so we will hopefully be able to remain on Temador for one year if her body tolerates it. She has completed 6 of the 12 months. She will also continue to see Dr. Chang every two months. After she is off Temador for two months, she will again see Dr. Chang in two months. Then, if all goes well, Heather will start seeing Dr. Chang every three months.
Now, what does the future hold? Heather's type of brain cancer will grow again one day. However, as I wrote and told Casey William (a young MWHS graduate who now lives in LA and has just been diagnosed with giloblastoma multiforme) last night, that day does not have to be soon! We believe that new successful treatments are just around the corner. We believe Heather will beat this. We believe it is brain cancer's turn for a cure!
As I read Casey's blog, I became motivated once again to spread the word about brain cancer awareness. He too is asking that we spread the need for awareness. I feel LFAC has that mission covered, so we better get going again.
As always, thank you to those who faithfully read about Heather's Journey. I am going to start closing each entry with some brain cancer information:
Gliomas arise from the glial, or supportive, cells in the brain. There are different types of gliomas. Astrocytomas are gliomas arising from “star-shaped” cells called astrocytes. Oligodendrogliomas arise from “fried-egg shaped” cells called oligodendrocytes. Ependymomas arise from “corn-kernel shaped” cells called ependymal cells. When the specific tumor diagnosis is made by the pathologist, the tumor is also “graded.” This number grade is based on how normal – or abnormal – the tumor cells appear when examined under a microscope. Grade I tumor cells look slightly unusual when compared to normal brain tissue cells. On the other end of the scale, grade IV tumor cells appear to be very abnormal. In this four tier system, grade I tumors are called “benign,” grade II tumors are called “low-grade,” grade III (or anaplastic) and grade IV (or glioblastoma) tumors are called “high grade” tumors.
Another good piece of information: Heather has only six months of chemo left. We were told by another doctor that some people remain on Temador for 4 - 5 years if their body can handle it. Somehow, the conversation lead us to believe that was the goal for Heather. Anyway, Dr. Chang told us that Heather is being treated aggressively, so we will hopefully be able to remain on Temador for one year if her body tolerates it. She has completed 6 of the 12 months. She will also continue to see Dr. Chang every two months. After she is off Temador for two months, she will again see Dr. Chang in two months. Then, if all goes well, Heather will start seeing Dr. Chang every three months.
Now, what does the future hold? Heather's type of brain cancer will grow again one day. However, as I wrote and told Casey William (a young MWHS graduate who now lives in LA and has just been diagnosed with giloblastoma multiforme) last night, that day does not have to be soon! We believe that new successful treatments are just around the corner. We believe Heather will beat this. We believe it is brain cancer's turn for a cure!
As I read Casey's blog, I became motivated once again to spread the word about brain cancer awareness. He too is asking that we spread the need for awareness. I feel LFAC has that mission covered, so we better get going again.
As always, thank you to those who faithfully read about Heather's Journey. I am going to start closing each entry with some brain cancer information:
Gliomas arise from the glial, or supportive, cells in the brain. There are different types of gliomas. Astrocytomas are gliomas arising from “star-shaped” cells called astrocytes. Oligodendrogliomas arise from “fried-egg shaped” cells called oligodendrocytes. Ependymomas arise from “corn-kernel shaped” cells called ependymal cells. When the specific tumor diagnosis is made by the pathologist, the tumor is also “graded.” This number grade is based on how normal – or abnormal – the tumor cells appear when examined under a microscope. Grade I tumor cells look slightly unusual when compared to normal brain tissue cells. On the other end of the scale, grade IV tumor cells appear to be very abnormal. In this four tier system, grade I tumors are called “benign,” grade II tumors are called “low-grade,” grade III (or anaplastic) and grade IV (or glioblastoma) tumors are called “high grade” tumors.
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