It’s Kind of a Big Deal

Wish I knew who to credit for this pic because it is awesome.
Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

People You Need to Meet #38: Clint Murphy

What I wish I knew before my mom got brain cancer… the value and limits of time.

Last picture with mom

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

—-
Mom Hug

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

52 People You Need to Meet: #37 Sue Jarvis

Sue & Megan Jarvis

Our daughter, Megan, had suffered from headaches for years which doctors said were migraines. However, on December 1, 2004, an MRI revealed our worst nightmare. We got the news no parent wants to hear – “your daughter has a brain tumor.” Our lives would be changed forever that day.

A biopsy revealed a grade two Oligoastrocytoma.   After three surgeries and years of chemo, fast-forward to August 2009, her tumor had now progressed to a grade four Glioblastoma.   This time treatment would be radiation and more chemo. Fast-forward to February 2012, more words no parent wants to hear – “Megan’s tumor is growing, and we have run out of options. “ Basically, nothing more we can do for your daughter, and then I asked the dreaded question – how much time does she have, and the dreaded answer – six months. So we took that special trip, had fun with family and friends, ate good food and we didn’t focus on what was going to happen tomorrow.

On August 10, 2012, Megan passed away from this terrible disease. It was a long journey of so many ups and downs that Megan handled with such grace and dignity – never complaining. She had a beautiful spirit that shined through in how to live day-by-day with the challenges of a terminal illness.

Six months after Megan’s death, I found the following paper she wrote for an English class at Old Dominion University. The paper was a hidden gift to us, as Megan was very private about her illness. It gives such an insight as to what life is like with a brain tumor. Megan just wanted to live a normal life like any young adult.

“English 101
Megan Jarvis
March 6, 2008

I believe that life is something that should never be taken for granted. In my first year at college I have met many people who do this every single day, not thinking anything will happen to them; that they are untouchable. I, like any young healthy person, thought that I would be fine forever, but realized that disease does not discriminate. It can affect anyone at any time, no matter how perfect they think their life is.

When I was sixteen years old I found out I had a brain tumor. I had three major surgeries, each setting me back physically and mentally. I had to deal with pain, speech therapy, seizures, chemotherapy and radiation. It has been hard, but it has helped me understand how precious every little thing in one’s life is. Since the surgeries it has been hard for me to remember my friend’s name, drink a cup of coffee, drive a car, swim, or play my piano. It is even more difficult to take a piece of paper and write my thoughts into words. Another thing that is different is all of the medication I am on. Before this I never took any medicine, and now I can’t go a day without it. It is a lot to remember and also come many side effects. The worst is when I become toxic, which has happened many times. This hurts me the most by having to miss important things, like school. I had to be home-schooled part of my senior year. I have lost almost all of my short-term memory and have trouble finding words. This can be very frustrating.

With things being the way they are, it is distressing for me to see people act in ways that are so perilous and think nothing of it. They won’t wear their seatbelt in their car; they don’t need it. They start smoking cigarettes; it makes them look cool. Lying out in the sun all day is smart and makes them look better. And after all of these things, they believe they are so healthy that they have no need for medical insurance. Then they start with their complaints – I’m not getting paid enough, I don’t like my car, I’m not tall enough, my clothes aren’t pretty enough. I want to tell them to stop wasting their time complaining about these petty things that don’t mean anything. Start appreciating things that do matter. Volunteering in a hospital I have met many elderly people with terminal diseases. When talking to them, almost all say that their sickness is due to decisions they made when they were young.

I met a person at school and when I told him about my situation, he was surprised at the way I was living my life. He said with something like this I needed to carpe diem, or “seize the day”. That was the motto by which he lived. And I did agree with him. Eat, drink, and be merry is something everyone should do; live a happy life. But don’t lose concern for the future. I told him my saying is memento mori, “remember that you are mortal”. Life is something that’s value should not be underestimated.

I know what I have experienced is more than significant. It has completely changed my life. Everything now is opposite of what I had planned it to be. It did have some good with it though. I was able to meet so many great people, people who have gone through much more than me. It showed me that I have more friends than I ever thought I did. It showed me how kind people are, but unfortunately how unkind others can be.

I am strong inside, not fearful of my future. I don’t look ahead, just the present. I don’t even know what I am doing tomorrow. I was never scared of what was going to happen to me, and I was the one holding up my family through the ordeal. I don’t know what I want for the immediate future. I think my goal is to just get through another day and see what happens from there.

My life is nowhere close to where it was before any of this happened, but I wouldn’t change anything.”

Megan had wisdom beyond her years like so many children and young adults who have to deal with cancer. Their lives remind us that it’s not the number of years we are given, but how we use them.

The question of what I wish I knew before Megan was diagnosed. I wish this were all a bad dream! I wish I wasn’t in the grieving parent club that I didn’t ask to join. Someone I knew who had also passed away from a brain tumor last words still stay etched in my mind.   Confront reality, confront the end.

I thought I knew what life would be like after Megan was gone. I thought I would be prepared. But no one can be prepared for death, let alone the death of their own child. I knew how this story would end.  After all, you don’t read of too many people living a long, full-life with a GBM. Sometimes statistics don’t lie. But that’s not to say we ever gave up hope. I grieved for many years being her mother and primary caregiver and watching her go through so much pain and suffering. That grief journey is over and now I’m on a new journey. Learning to live with the loneliness and emptiness. Learning to live with the reality that my hopes, dreams and future for Megan – gone. All the thoughts of what could have been, should have been, would have been – gone. From the time Megan was little, she always wanted to be a doctor – ironically, a Neurosurgeon.

So for my future – I will strive to live my life with Megan’s positive attitude, courage, perseverance, compassion, faith and living for today like there may be no tomorrow on this earth. I do believe there is hope that each day can get better – it’s a minute-by-minute process that may take me a lifetime to achieve.

Megan, may the wind be always at your back, and may the sun shine warm upon your face. And until we meet again, may God hold you in the palm of his hand.

Love Mom

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

brain-tumors-twitter-chat

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
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