10 Answers from Today’s Living With Brain Tumors Event

I just participated in a great Twitter Chat that was moderated by Dana-Farber and the National Brain Tumor Society. For those of you who don’t do Twitter, I thought I would re-cap the conversation here. The info is all archived on Twitter under the hashtag #DFCIchat. Dr. Reardon was there representing @DanaFarber, and several staff members from @NBTStweets were also online. All the answers noted below are from Dana Farber, unless otherwise noted.

Q1: What are the most common kinds of brain tumors?
A1: Glioblastomas are the most common adult primary cancer of the brain; about 13,000 cases are diagnosed every year in the US.
A1: Other kinds of brain tumors include oligodendrogliomas, astrocytomas, and meningiomas.
A1: Metastatic cancer to the brain or central nervous cancers is 4-5 times more common than primary cancers.

Q2: What are some of symptoms of brain tumors?
A2: Symptoms can include difficulties with balance, strength, coordination, vision & ability to speak. Seizures are also common.
A2: Headaches that are new/worsening. Often worse when lying down & in the morning – they may include nausea or vomiting.

Q3: What are strategies for coping with cognitive brain tumor problems?
A3: Neurocognitive testing is critical and allows identification of areas of strength and weakness.
A3: Potential interventions include medications such as stimulants (ritalin and nuvigil) and memory boosters (aricept)
A3: There are also many great apps to help, such as Lumosity, or formal cognitive rehab therapy
@CBlotner: Other interventions include support groups or programs such as @campdream where survivors can meet peers like them.

Q4: What kind of support is important when someone is living with a brain tumor?
A4: Brain cancer can have such a wide array of impacts on patients and families: physical, cognitive, and emotional.
A4: Patients often have physical difficulties and may need help with strength, balance, and coordination.
A4: Patients may experience changes in personality and behavior, so support and education is also important for caregivers.
@askdebra: There is an incredible #braintumor socmedia community hashtag: #btsm. 1st Sun of month 10-11pm ET is #btsm twitter chat

Q5: What role does nutrition play in managing brain tumors?
A5: Good nutrition is critical for the immune system and overall health.
A5: A healthy, balanced diet can help patients get through treatment with fewer side effects.
A5: A trained nutritionist should be a key member of your care team as a brain tumor patient.

Q6: What role does social media play for the brain tumor community?
A6: Social media can bring together clinicians, patients, and advocates who are passionate about curing brain tumors.
A6: A brain tumor diagnosis is difficult to cope with. Connecting w/ other patients through social media can be invaluable.
A6: Great info is available online, but some is misleading or wrong. Be cautious and discuss any questions with your care team.
@amandahaddock: In a community defined as “small”, social media connects those effected and helps them feel less isolated.
@BrainTumourOrg: We have a Facebook group for anyone affected. People use it to share their stories, news, tips. It’s a real community.
@Cangela25: @Livestrong does free programs for Cancer Survivors at YMCAs
@amandahaddock: Facebook groups to check out: Glioblastoma Cancer/Brain Trauma Caregivers; Brain Tumor Talk, Brain Cancer Family

Q7: What role does exercise play in managing brain tumors?
A7: There is some evidence that exercise may improve symptoms and possibly impact progression and survival.
A7: Exercise can combat fatigue, improve bone health, and reduce anxiety.
A7: Exercise keeps the immune system strong and can reduce risk of complications.

Q8: How do clinical trials contribute to brain tumor advances?
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: At Dana-Farber we test patients’ tumor samples to recommend specific clinical trials that offer the most promise and hope.
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: We are developing a variety of strategies to stimulate the immune system to recognize & attack tumors.
@NBTStweets: You can search for brain tumor Clinical Trials at clinicaltrials.gov
@TheLizArmy: I would love to see a SURVIVORSHIP PLAN for brain tumor patients/survivors. These are developed for other cancers.

Q9: How can caregivers of patients with brain tumors find support?
A9: A brain tumor diagnosis can cause huge emotional & financial disruptions for families. Support for caregivers is critical.
A9: Finding support groups (online or in person) can be key to coping for caregivers.
@AmandaHaddock: There are people all over social media to connect with. Active users on Facebook, Twitter, Instagram, and Pinterest
@TheLizArmy: Caregiver.com (@todayscaregiver) has a ton of amazing resources and articles; Caregiver.com also features articles w/”famous” caregivers which is pretty inspiring

Q10: What resources would you like to share?
A10: On September 20th we’ll be hosting an annual Living with Brain Tumors event at Dana-Farber: bit.ly/N2A9o6
A10: At Dana-Farber we offer a number of clinical trials for brain tumor patients: bit.ly/UzudHo
@AmandaHaddock: facebook.com/OperationABC will post about any event nationwide that is raising awareness or funds for brain cancer research
@AmandaHaddock: @dragonmasterfdn keeps a list of any organization that has direct patient/caregiver benefits. dragonmasterfoundation.org/resources/
@BrainTumourOrg: For everyone from the UK – support groups regularly all over the country #DFCIchat: bit.ly/1rTEbBY
@NBTStweets: Download Frankly Speaking About Cancer: Brain Tumors for information on living with brain tumors #DFCIchat
@TheLizArmy: The #BTSM community hosts tweet chat every 1st Sunday for anyone impacted by brain tumors pic.twitter.com/P7f2SJ5AOV
@AmandaHaddock: NBTS has an advocacy day every May in DC. Awesome opportunity to meet survivors and let your voice be heard at the Capitol.

I didn’t try to re-create the whole conversation for you, but you can get a pretty good idea of how it went. Overall, it seemed very successful. I hope that there are a lot of people that can benefit from this information.

Living with Brain Tumors

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As a lot of you know, I volunteer actively in the brain tumor community.  I serve as the Kansas Lead Advocate for the National Brain Tumor Society, and I am President of the Dragon Master Foundation. Both are very rewarding roles, and through them, I meet interesting people in the war on cancer. Through one of those connections, I’ve been asked to participate in a Twitter chat this week.

I’m very excited about this chat for a few reasons:

1) It is so hard for the newly-diagnosed to know where to turn for information. This chat will be an excellent resource for them. Topics to be covered will include symptoms, treatment, exercise, nutrition, and research breakthroughs.

2) We will have some direct interaction with David Reardon, MD, Dana-Farber’s clinical director of the Center for Neuro-Oncology. He is very well-respected in the field, and I am honored to be chosen to participate in something he is involved with.

3) Hosting the chat on Twitter means that people all over the world will have access to the information. It is an exciting time to be involved in advocacy and education movements, and I think cooperative efforts like this will be a big benefit to patients, caregivers, and medical professionals.

If you aren’t on Twitter yet, now is the time to join! If you have questions you’d like to ask during the chat, simply tweet them to @DanaFarber. Follow the conversation on Twitter through the hashtag #DFCIchat.

52 People You Should Meet: #36 Melissa White

Sweet, little Adele
Sweet, little Adele

What I wish I had known before our barely toddler got brain cancer…

I’ve always been the kind of person that likes to stay busy, have a hand in everything. I like to do as much at our kid’s school as possible, be involved with our parish, help in our community. I had no idea how much we would need all those people. I had no idea that they would rally around us before we even knew we needed it. I’m thinking back to those first days, weeks, months of Adele’s diagnosis and treatment. If someone had asked what we needed instead of just stepping up and doing it, I don’t think I would have known what to say. If I did have an idea, I would have been too proud to voice it. I do now know what we needed and were blessed with, and I hope it helps other friends and families who want to know how to help.

Let’s start with just how debilitating it can be to have a sick kid; a “really sick, possibly won’t make” it kid. It was literally all I could do to roll out of bed. I probably functioned on about 50% of my brain during the worst times, the chemo, waiting on those crucial MRI’s. Nothing extra was happening, lots of McDonald’s was consumed, and we limped along. The worry was physically and mentally exhausting. I had no idea how much worry could knock a person down. Thankfully, I had given up all of my volunteer duties and part time work as soon as Adele got sick. I gave myself permission to focus solely on her and our family being together. Our world narrowed in a big way to the most critical, most important things and everything else had to go, at least for a while.

The best thing anyone did, and continue to do, is pray for Adele. I’ll never forget someone’s message “when you are too tired to pray, I’m praying.” That was, and still is, incredibly comforting. I did have times where there was nothing left, and I was so thankful for the folks out there praying for Adele. To this day, prayer holds us up. We’ve received several relics and medals that we keep near Adele (she has relics of St. Benedict, Gianna and Gerard under her crib sheet). She also has a miraculous medal under there. You can’t really put a chain around a toddler’s neck so sleeping with them (safely) was the next best thing.

Food was probably second best on the list of things folks did. Our kids would have eaten chicken nuggets every night if it wasn’t for our amazing parish, friends, and even strangers. Even better, everyone brought tons of food, so even though we only got a few meals each week, there was plenty of food. Don’t give someone your dishes, please use a foil pan that they can throw away. The last thing they need is to worry about returning your Pyrex. Some of my favorite meals were the snacky ones where we could just grab bits here and there. Also awesome was the meal that could be eaten or frozen. Sometimes we were either out of town or needed to eat other food first. The ability to freeze a meal and pull it out later was wonderful.

Another huge blessing was a family that single handedly took over our lawn care. Honestly, we probably never would have remembered to mow. Even if we did remember, we were tired or gone or just wanted to be together as a family. This goes for the other every day tasks of life too. Go fold laundry or pool cash together with friends and send someone to clean house. We were blessed with a couple different friends who gifted us housecleaning, and it was amazing. The sheets never would have gotten changed otherwise. When you spend an hour or two on someone’s every day work, you are gifting them an hour or two. That time is so precious.

Don’t ask to mow, just show up and do it. I always felt guilty saying yes to help, and I was so busy during hospital stays that I couldn’t keep up with texts, calls and emails. When I did have a minute, there was no cell service or I just didn’t have the energy. Just drop off a meal, or just take a Coke to the hospital. And then go home. I know that sounds mean, but it takes a lot of extra energy to entertain a visitor. Like I said, this is my experience, everyone is different. There were a few, very low maintenance visitors that were very helpful and without them Peter and I would have lost our minds.

Please don’t stop emailing or texting; just don’t expect a response. We had a very busy, social life before cancer struck, and I felt very isolated at times. Even if I didn’t reply, I loved reading the emails and messages. It meant a lot that folks were thinking about and praying for us. A lot of times the message was exactly what we needed right then too, like the friend praying when we were too tired. I know you don’t know what to say, just “Hi, I’m praying” is good.

Our parish, friends and family raised cash for us and created a non-profit fund for Adele at a local bank. This was a huge Godsend that we didn’t even realize would need and continue to need. Medical costs of course are huge, and then all the extras like travel costs, extra eating out when you don’t have the energy to plan a meal, things you didn’t realize you would need (like the time our one week hospital stay turned into 3 weeks.) We have been so blessed with financial support, and it made a huge, huge difference in our stress level. Not having to worry about missing bills or not having gas money was and is a major blessing. It’s also so good for our hearts and souls to see all the folks pouring out their love to Adele in such a tangible way.

We had a core of consistent hospital visitors that kept us fed and sane, and they rank right up there in the top three best things folks did for us. The guys brought food that didn’t come from the cafeteria; they were helpful, and they didn’t care if we hadn’t showered for four days. They would even hold Adele (who was sometimes screaming because she felt like crap and just wanted Mommy or Daddy.) They didn’t require anything from us, and they filled our tanks so we could make it another day. Being in the hospital is rough, being there and watching your child suffer is almost unbearable.

My husband reminded me how much our friends and family stepped up to help with our three big kids while Adele was in the hospital. There is no way we would have stayed sane, and Peter could have kept working without all the help. Peter’s work has been amazing as well, God is definitely guiding us.

We, well, mostly Adele, got “stuff” as well, along the way. Some of it was very needed, like the Basket of Hope we got after brain surgery in St. Louis. She was feeling better, getting bored, and that came at the perfect time. Others mentioned items like quarters for laundry and vending machines, stamps and stationary, actual mail (this was especially nice for our big kids, several thoughtful folks sent them letters and items.) Someone else to send thank you notes on behalf of the recipient – I could not keep up with thank you notes. We were literally in the hospital for almost 6 months with little breaks in between.

There were also sibling packs from the hospital and other folks that helped our big kids not feel so left out. This really depends on the age of the siblings though, it might not be so helpful for smaller kids. We did get a little overwhelmed with toys and blankies at one point, so temper your toy shopping. I will say that twice we got two big grab bags, those were the best. It was lots of random stuff, mostly one time use and/or disposable, for mommy, daddy and Adele. It was a great distraction and time filler and it was great stuff like gum, little snacks, bottled water and bubbles. All excellent items that we wouldn’t have to pack up when we eventually went home.

Speaking of going home, kids on chemo are must more susceptible to germs so things like Clorox wipes and Purell are always nice. That housecleaning comes in nice here too. You don’t realize the level of clean you have to obtain until your kids immune system is completely wiped out and a germ normal folks encounter every day could send them right back to the hospital.

In summary, prayer is number one. Pray, pray, pray. Just knowing people cared about us and didn’t forget us was so important. And then just the regular every day stuff we all do with barely a thought like eating and home maintenance. Time is a huge blessing, anything you can do to give a family more time together is huge. And it probably doesn’t even cost you any money. Stuff is just extra, little stuff that won’t create more work (i.e. finding a place to put or pack it).

Thank you Jesus for all the folks you sent our way, for all the folks you continue to send our way. You’ve blessed us abundantly. Please bless others in need the same way. Please grant Adele complete healing from cancer and many, many, many years with us on Earth. Jesus, we trust in you.

Editor’s Note: If you would like to keep up with little Adele and her journey, you can follow Melissa’s blog here: http://workinprogress-melissa.blogspot.com/?m=1

In Memory of Pauline Jones Elmore

Today is my grandmother’s birthday. She would have been 96 today, but she passed away in March. She’s one of the few people in my life who died that was truly ready to go. I had the opportunity to visit her a few months before her death, and she told me she was ready. What faith it is to be at a point where you can say, “Lord, I’m ready.”
She had outlived two husbands, two sons, and several grandchildren and great grandchildren. But she also left behind many other children and grandchildren who miss her greatly. She doesn’t have an official obituary on the web, so today I thought I’d offer up this little reminder of a life well lived.
Rest in Peace, Pauline Johnson Jones Elmore. Wife to Kenny Jones and Austin Elmore. Mother to Carolyn, David, Troy, Jerry, Charlotte, and James. She was a true matriarch of our family and she will be forever missed.
In Memory of Pauline Jones Elmore
July 25, 1918 – March 5, 2014

What’s Really Important: 52 Blog Series Update

If you have been paying close attention, you know that we have missed a couple of weeks in the 52 Blog series. From January through June, I posted one  story a week, usually on Sunday. If I’m being honest, getting those stories published on time was probably the only thing I was doing with great regularity.

This past month, I have been VERY busy. The “day” job has been busy, and Dragon Master Foundation has also been demanding a lot of my time. I haven’t been pestering my writers like I had been, and there have also been some personal issues with a few of the writers that have kept them from participating. It seemed that it all came to a head in July and the blog has suffered.

But you know what? It’s just a blog. The point is to share stories that will help others down this path and to raise awareness among those who we hope will never travel this way. It’s important, but it is secondary to the real world. The real world demands our time and energy, and rightly so. I hope that you will stick with us through this rough patch, and I believe that we have some wonderful stories yet to share with you this year.

In the meanwhile, I wanted to share Danny’s story with you guys. Danny is a brain cancer warrior who is having a birthday on July 25th. You may have seen his story on the news or on Facebook. He has DIPG, which is a particularly nasty brain cancer. Making his day a little brighter will make your soul smile.  In case you missed it, here is his address:

Danny Nickerson
PO Box 212
Foxboro, MA 02035

If you mail a card tomorrow, it would still make it there in time for his birthday.

 

Shocking Donation From A Teen Should Have Everyone’s Attention

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This young man did something shocking on January 15, 2010. This story caught my eye because it was about a kid with brain cancer. A kid who liked soccer and cooking. A kid who died on my son’s birthday in 2010 – the year my son would be diagnosed with the exact same kind of tumor. But none of those are the reason that I’m sharing this with you.

Here’s his story if you want to read the whole article: http://m.michiganradio.org/?utm_referrer=https%3A%2F%2Fm.facebook.com#mobile/10466

The shocking thing about Laurance Carolin is that he was the FIRST “child” to donate his brain to this hospital for research. That is significant to me, and it should be to you, too. Here’s why:

1. The C.S. Mott Children’s Hospital at the University of Michigan has been around since 1905. So in more than a hundred years, no one had made the decision to let researchers study their child’s brain after death. Laurence and his parents made the heart-wrenching decision to donate his tissue to help others. It isn’t like organ donation. They knew it wasn’t going to directly save a person’s life. They had the VISION to understand that it could save thousands of lives down the road.

2. Tissue donation is rare. I’m working on this issue every day, and even I didn’t realize it was this rare. It is dependent on people being generous in one of the scariest times in their lives. I don’t know about you, but when I’m scared, I’m usually only thinking about myself and my family. Having the presence of mind to think beyond your current situation takes courage.

3. Brain tumor biopsies only yield very small samples. Because of the location, surgeons have to be particularly careful with tissue removal, and the result is frequently tiny pieces of tissue that are not useful for research. Having access to the brain post-mortem means that they can take larger pieces of tissue for study.

4. This hospital took the tissue to use for research. That might not sound significant to you, but it is. They could have said, “Sorry, we don’t have a program to do that.” I’ve heard of other hospitals saying, “Sorry we don’t have room to store it.” The C.S. Mott Children’s Hospital at the University of Michigan found a way to make Laurence’s donation matter, and it may not have been easy for them.

5. You have the power to make donations like Laurence’s more significant. The whole point to Dragon Master Foundation is to build an infrastructure that multiple hospitals can use to collect, store and analyze this type of tissue. There are still places where the tissue not needed for diagnosis is simply discarded. And yet, at the same time, there are researchers who don’t have the tissue they need to do research.

It is a significant problem that we are just now able to solve. Technology is just getting to a place where it is somewhat affordable to build the type of infrastructure that researchers need. This database will help researchers at multiple institutions. They will have far greater access to the data they need to find better treatments, and ultimately cures.

I believe with all of my heart that this database will help researchers cure cancer. I can’t do the research, but I can help raise the money for them to have this resource. If you want to help, too, please get in touch with me. Everyone can play a part!

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