Metamorphis...or rebirth.... or ........hope.

488 Days ago, my world changed. In a rather mundane Monday afternoon, putting away dishes and discussing simple things, I was rocked. I had a seizure. I was confused and very lost.I didn't know , but within a few days learned that i had been dealt a blow that only changes those that have it.I was diagnosed with Stage 4 Glioblastoma Multiforme ( Which I have learned to spell since)and it is not a good thing.The doctors will not make any bones about it, it's terminal. But ... you can try to"fight it as best you can".

Fight? Fight? I'm Irish and hardheaded! I was born to fight!Fight or die? Let's go, get the gloves. And fight we have. We had a tumor removal, which was done by super amazing Dr's who told us they removed the tumor. They also explained that the tricky little brain tumor is sometimes the equivalent to removing a tree and that there are always the possibility of root structures that might come back.

Odds? Odds? I'm not a great mathematician, but I am certainly not ready to give up.With the help and support of my so strong friends, family and circle, we fought on. Chemotherapy, sickness, sleeplessness, fatigue. We did 40 days or so of radiation, got sick on meds, slept a lot. But we are battling ,literally, for life. We completed the Chemo and radiation, waited for the dreaded MRI to see if there was any growth.........Damn!

My incredibly great doctor advised we try a different Chemo and include Avastin infusions. Quell the tumor, fight! We started the infusions and a dose of Chemo meds that didn't create havoc. We battled on . All the time continuing working as i have a strong desire not to be uninsured and an insatiable desire to be part of my normal life, but we were battling.

8 weeks ago, we had the dreaded MRI, which is either Christmas or heartbreak, depending on the outcome. Everyone who is a GBM patient, or Loves one has the same reaction, you go and celebrate and enjoy positiveness, or you take half a breath and say "What now?"

Super Doctor, is pretty much out of new options. "Lets go with more Radiation, and more Avistan. Ugh, Knock knock, who's not there? Radiation and Avastin! It seemed a little like putting a band-aid on an infection that's healing, and we are asking what it does? Well we can buy you a little more "Quality Time". How much is "a little more?" 2 months, 4 Months, Maybe more.

Half Breath for everybody. Let's go home.

This didn't sit well with my Daughter, Heather. Anyone who knows anyone with Glioblastoma has known the failure of this crippler. Most everyone has watched the 60 Minutes special on the Duke University clinical trial on the Polio Vaccine. It's an unorthodox attempt to actually fight the tumor which can be eradicated. It's unusual, its makes sense, and mostly looks very promising.

Somehow, through contacting Duke, she convinced the clinical trials group to look at our records.They saw how we were still fairly functional,and asked if we could come down to be tested for a possible trial! We were excited to say the least, and with the help of some dear friends aquired a flight and a hotel for neurlogical and clinical testing in North Carolina. They tested, they prodded , they questioned and we tried to be a model candidate.We met Dr Friedman from the 60 minutes episode, and they called us back the next day, it was a no go on Polio. Apparently, the tumor is very close to an artery in my brain and they were concerned about possible bleeding out. Bummer.

They did offer another option.A very similar type of invacination that is called "DC2V" and looks every bit as promising.The D2C7 is an immunotoxin drug that attaches to the glioblastoma cells that are growing and the toxin in the drug kills the bad glioblastoma cells. The toxin does not kill the healthy tissue around the Tumor in the brain, just the bad cells. The brain swelling comes from the toxins killing the bad cells and aggravating the tissue around it and trying to heal the area where the tumor is. We combat the swelling with the steroids to help the toxins continue to work on killing the bad cells. We came home, talked about and decided its a shot!

Once again, my amazing circle is rallying to help us coordinate and work out this procedure! My son has set up a go fund me site, as the cost's continue to rise, and I thank anyone who has helped.Once again, the kindness of people is a warm blanket around our lives and once again shows how compassionate people are. I am a simple blue collar guy trying to survive nasty and tough battle.Any little bit helps, cost's are tough( cable, internet, medical bills,insurance, travel expenses,etc) and I can't say how much I appreciate all you have all done for me. Please check the link and donate if you can.


https://www.gofundme.com/skiplong

The motto at Duke is, "At Duke There is hope". I think the thing that I have been awakened to is that there is Hope.They are working to beat GBM, and I am very Hopeful that this works. 4 weeks ago, I was starting to sink into the stark darkness that gives up, that settles for "Quality Of Life". But thanks to research , hope and caring people all over the world, I have a renewed energy and hope!. Never give up Hope! Thank you all Hug each other often.We will Talk soon!

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Go Duke!!

Go Duke!

Well, yesterday we received the very best news we could have hoped! The oncologist from the insurance company reviewed my Dad’s case and “emphatically agreed” with our approach to treatment! I should say a couple of thank yous to the people who worked tirelessly to make this happen and help us out! Heidi from the Welfare and Pension office, you are amazing! Thank you for taking up this cause with me from out of the blue! You remembered who I was from when my Dad was first diagnosed which was astounding, and your compassion and empathy is unbelievable! Phillis, the wonderful patient service representative at Duke who initiated the approval process. Your dedication to following up with the insurance company, and for calling me on your day off to share the great news was inspiring, thank you for celebrating with me! Craig and Jeff, thank you for your legal consultation early on Saturday, your conviction and advice helped me have the courage to tell Dad we would fight it no matter what! It is part of why he stayed for treatment, so thank you! And finally, thank you to the Oncologist who understood why we were taking this clinical trial and for approving my Dad’s treatment. I don’t know your name, but we are blessed that you agreed, so thank you!

So Dad was admitted this morning at Duke and is preparing for surgery tomorrow. After receiving the good news, Mom and Dad had time to crash a wedding and enjoy a beer at “our” little picnic table on the lawn. He is a little busy today (as to be expected) so I will fill you in on what our new treatment plan entails and maybe a couple of tips from our recent experience. I should preface this with the fact that this is what we have decided is the best option for us and my Dad at this time, all the information I provide is from what I understand, but anyone looking at this should do their own research as well!

D2C7-IT – sounds like something out of Star Wars, huh? Well it kind of feels that way too! This is a brand new Clinical Trial that Duke is conducting. D2C7 is an immunotoxin that they will inject into my Dad’s brain starting on Tuesday. The process of approval was long, I first contacted Duke on August 10th, but it was worth it. The clinical team down at Duke are downright the most hopeful, sweet, caring southerners I have ever met (I haven’t met that many, but trust me, these people are good)! Chevelle, one of the wonderful clinical trial RN’s, explained to us that D2C7 is an immunotoxin that they have been testing in rats (yep, rats!) and had shown promise in early studies of breaking down glioblastoma tumors. I am not of clinical background, so can’t go in to specifics but will include the link to the clinical description of the trial at the end of the blog. According to the clinical trial documentation the D2C7 immunotoxin has a “high binding affinity for both EGFRwt- and EGFRvIII-expressing glioblastoma multiforme (GBM) cells.” I think this basically means it is attracted the mutating cells in the B (bastard as I now refer to it) and kills the bad cells. What I understand is that a few weeks after infusion, your immune system responds to the toxin, and fights it like it would any infection. She said in early studies it kind of looked like “Pac-Man” was going in and punching holes in the tumor! I love Pac-Man!!

There are risks with this that are similar to any other treatment of brain cancer, one of the biggest being brain swelling and deficits from the swelling post initial treatment (again with the short term memory loss, headaches, all the “lovely” side effects associated with this nasty tumor.) And, a big risk knowing that this hasn’t been done on very many humans (But Dad always says, Go Big or Go Home, so why not?) Also, there are risks associated with the treatment itself… biopsy tomorrow to make sure the B is still what we think he is, the placement of up to 4 catheters in his head where our B resides. Then if all goes well, a slow infusion of the immunotoxin for 72 hours (Yes, 72 hours). A short break and CT scan at hour 24 to make sure the drug is going where it needs to then back at the infusion. And hopefully, if all goes as planned Dad will be discharged on Saturday and make the flight home to us on Monday.

If it all sounds a little crazy, don’t worry we think it is too! But we are in rally mode (Chris, I expect a rally hat picture with a Duke shirt on at some point this week!) and we are fighting! Why? Not just for more time, but also because this could help other people struggling, it could be a breakthrough and we have hope that this new experimental treatment might just knock out this dragon’s fire breathing ways. Hope.

After this week, Dad and a caregiver will need to fly back to lovely North Carolina around 9 times for MRI’s and appointments over the next 12 months. (NC is literally across the whole country from us if you didn’t know! We keep getting aghast responses with southern drawl “Oh My! Seattle, that is so far! You guys live way, way up there and came all the way down here? Well… hon, we are happy to have you!” from nearly everyone we talk to! Gotta love the southern charm!) Thankfully we have reached our out of pocket maximum and the expense of the routine clinical costs are covered by insurance. But there is additional expense in flights and lodging accommodations that we will need to resource. The Duke clinical team gave us a pamphlet of resources for flights and lodging, and they actually were able to provide us free tickets from Southwest so Mom and Dad could make this initial trip (Amazing). And, I know we will figure all this out with time, we continue to march forward!

So in effort to help others who may be suffering through and fighting their own dragon, some tips from our experience. A little bit about medical records and HIPAA… If you decide to pursue a clinical at an external facility they will likely want all medical records and history for your loved one. Your current health care facility won’t send this without having your loved one or a power of attorney sign a “Medical Records Release of Information”. Sounds official and complicated, but really it’s just a piece of paper you need to sign saying its ok to share the medical records. Call the Medical Records department, request the form, sign it and send it back via fax (so old school, but this is the current state of healthcare unfortunately) or e-mail. Depending on urgency of your situation, you can request that the medical records department Fed ex or overnight the records to your facility of choice, just be prepared with the address. This shouldn’t cost you anything (or it didn’t for us at least), and was the only way we got my Dad’s records to Duke so quickly. We asked for everything, but Duke had a very clear list of what to request, which was a great help. We completed forms and paperwork and had it back to Duke within 24 hours, which greatly advanced how quickly we were able to be seen.

Just a quick note on insurance denial, as this came as a complete shock to us this week, as the rest of his care at Duke has been covered thus far. There is a provision in the Affordable Care Act that states insurance cannot deny coverage of routine clinical care costs associated with clinical trials (Provision 2709). The clinical trial should cover any costs associated with the trial (Like the drug and materials to administer the drug). The ACA requirement went into effect January 1, 2014, but does not indicate to providers, health plans or insurance companies how to implement this within their own organizations. So, if you find yourself in a situation similar to ours where insurance was denying a clinical trial due to it being an investigational study, appeal the denial. Do not be afraid to advocate for you or your loved one. A friend gave me the advice that if I weren’t advocating for my Dad, then who would?  Insurance is a business at the end of the day, and that is how I treated it when fighting for my Dad on Friday. Be an advocate, be vocal and don’t give up when it all seems overwhelming and unreal. Then take a breath, and have faith. It doesn’t always work out, but in our case it did and we couldn’t be more blessed.

Again, these are all my own humble thoughts and opinions, I am no expert but have learned so much through this crazy battle. Oh wait…. I forgot one person to thank! Dad, you are an amazing, strong fighter. I know this battle has been hard, and at times you feel weary emotionally and physically, but we are so blessed to have you in our lives, and in our babies’ lives. You are an inspiration as a Father, Poppa, Friend and human being. Thank you for fighting! So, I sit here at the other end of the country (way up here!) thinking a few things:

1. Go Hawks (Kick off in 2 hours, I know you will be watching)

2. Go Duke Rock Stars (Kick off to surgery in less than 24 hours, (As Craig would say, Film at 11:00))

3. Fire up Big Team (We are all with you Dad, no matter how far away we are right now!)

If you are fighting a dragon (any dragon like this or something else difficult) I hope our experience helps in some way. Hug your loved ones, kiss your babies, make memories and cherish one another. I am humbled by the compassion and generosity of others, allow yourself a moment to do the same.

D2C7-IT: https://clinicaltrials.gov/ct2/show/NCT02303678

Our Fight continues

Our fight continues…

As Dad mentioned in his last post, we received some disheartening news from the Radiation Oncologist that radiation would give him more time, but not as much as we had hoped. Turns out this hitchhiking bastard is aggressive (For others that read my earlier post, I now decline to refer to the dragon as a hitchhiking friend as he has not reciprocated the favor by staying away. From now on, the Bastard it will be, apologies for offending anyone). So the dragon/bastard made his return in August. A little growth, and concern from the Rad. Oncologist that there might be more beneath the surface we just can’t seebecause of the Avastin. For us, time to get another opinion. The Rock stars are smart, but we are ready to try something new and they support us! Fire up big team!

Earlier this year I heard about the Polio virus trial at Duke, and thought maybe it was time for a hail mary (it works some time, if you will remember Seahawks vs. Packers in 2012! Go Hawks!) and given our options, (which we still have options and are to be thankful of this we have been told!) decided to contact the clinical trial team at Duke. After a whirl wind week of faxing, scanning and calling, Duke had all the medical records for Dad and told us to come on down for an evaluation to determine final eligibility for the Polio Trial! And so, we were off to North Carolina, thanks to the loving support of good friends of my Mom who arranged our flights and family who supported our hotel stay (Thank you DeeDee, Soloman, Tia and Thomas, we cannot express our gratitude through words alone)! Off to North Carolina to see about some Polio Virus and injecting it into Dad’s brain. Who would have thought? Cheers to the bastard, let’s hope for some Polio! 

So, let me tell you, the people of North Carolina are so wonderfully nice! We think we are nice here in Seattle, but those people know southern hospitality through and through. After a day of clinical testing and back to back appointments with the clinical team at Duke, they determined that we may be eligible for the Polio and if not for the Polio than a new study called D2C7. Dad passed the Neuro tests with flying colors (spell world backwards on the spot, we did it!) We had a follow up appointment the next day to determine what our options really were. So we left, tired, scared but hopeful that these smart people at Duke might be able to help us. That evening Dad and I found the only Irish Pub in North Carolina (or the only one google and I could find) and sat on a picnic bench on the lawn. We spent the evening doing what we have done for many years, enjoying a meal and talking about life, my babies, our struggles, our blessings and all that we have to be thankful for…Good, strong family and friends, the ability to work and produce great things, and our love for each other and ironically the bastard for the clarity it has provided in many ways. Life AC… Super hard, crazy but still good.

The Neuro Surgeon reviewed Dad’s MRI and the bastard had grown a little close to a ventricle, and there was concern that injecting with the Polio virus could lead to adverse outcomes(you know, brain hemorrhaging, paralysis and the like). But we still had options, radiation back home or a new clinical trial at Duke. The Duke team made the clinical decision that Polio was not the route for us, but we were still a good candidates for the newest trial (only 6 people in it so far) D2C7. At Duke there is hope! And We felt this leaving the hospital in August.

So we flew home, and spent a Sunday dinner with the family. Sitting around my kitchen island, waiting for our beef and noodles to cook, we discussed our options. Option A – Radiation for 3 weeks, risks of deficits like short term memory loss, potential for loss of physical functionality, radiating healthybrain as well as the bastard, unknown return to work status, prognosis maybe 6 months to 12 months, if we were lucky. Option B – D2C7 trial at Duke, risks of brain swelling and similar deficits because of this, and the unknown of a new immunotoxin injected into my Dad’s brain but, and this is a big BUT, Hope. This drug has proven effective breaking down Glioblastoma tumor in very early phases of the trial and follows the similar methodology of the Polio virus trial. Here is the scary truth, Dad will be the 6th or 7th person in the trial. There are risks associated with this procedure, but given our options, we decided as a family this was our best shot at more time. With a terminal diagnosis, my Dad has fought for two things. 

1. More time; time to spend with his grandbabies, time to play guitar, time to work and time to spend with his loved onesteasing and laughing. 

2. Any way to advance the treatment of this horrible cancer or to help his Glioblastoma compadres

So we made the appointments, scheduled the flights and away Mom and Dad went last Thursday back to beautiful North Carolina. Battle ready we were as long as we were cleared medically and the bastard hadn’t grown an additional tumor friend somewhere else (there are a lot of dependencies to be cleared medically for treatment). Thankfully the bastard stayed at bay, only growing a little over the last month, Dad’s blood counts looked healthy and he passed all of his neuro tests again (Dad, remember these words and say them back in order Pear, Nut, Screw! It’s a neuro/glioblastoma joke, but he did remember them!) Fast forward 24 hours when were notified that the insurance company has denied my Dad’s admittance to the hospital. And we thought our biggest concern was surviving the procedure and dealing with the outcomes of that, whatever they may be.

After spending over 8 hours yesterday talking to the insurance company, the insurance plan, the OIC and the US. Department of Labor, trying to understand the reasons for denial of this trial. The reasons I have been given are that this is an investigational study and the treatment is not medically necessary therefore insurance will not cover the hospital facility or professional fees of the treatment… We have appealed the denial (Based on the ACA provision 2709), but I am told we won’t have answers until Monday (although I have been assured an oncologist at the insurance company is now reviewing his case and we may hear back today) but Dad needs to be admitted on Sunday to begin treatment. So now… we wait and hope and pray that someone will understand our situation and approve his treatment. And even though the bastard and our opponents are mounting, we continue to fight for hope and time…….