It is STILL Another Birthday

april152015Sorry for the delay, and nobody wishes it were better news than me. Unfortunately, it’s not. This disease seems to be progressing, albeit slowly for the most part, but progressing. It’s not going to be the birthday we had hoped and prayed for, but it IS still another birthday. There’s something to say about that. One year longer is one more year of memories.

With that said, the new lesion is in the left frontal lobe whereas the other lesions were all in the right hemisphere. The report is attached to this messsage. As it reads in the impression, it is not entirely accurate. My clinical history and how it initially presents on MRIs is very important. These facts coupled with the fact it is showing in the left hemisphere which wasn’t present on the last MRI is troubling.

I needed a break. You have no idea how much I needed a break. I am a broken and beaten down man right now in many ways, but we shall fight on. We have no choice.

I have to undergo another gammaknife procedure. We waited around the clinic for awhile to see if they could fit us in this week, but it didn’t work out. We are now headed home, and will regroup tomorrow. As far as treatment, I have to discuss this with Dr. Ravi on how he wants to move forward. I promise to keep you all updated.

Please continue to pray, hard, for a miracle again. We love you all, and we need you more than ever.

Posted in Treatment Progress | Leave a comment

A Birthday Wish

Hello family and friends who love and pray for Ryan ~

Yesterday, April 13 – Ryan had his 67th round of chemotherapy. He is such a fighter. Today he is in Houston meeting with is medical team, and having an MRI on his brain to ensure that the chemotherapy has been working to keep the disease away! Results will be given tomorrow.

I think it’s fitting that one year ago today, he posted the below post. It’s a good reminder that even through all that he has faced in the last 5 years – he still maintains a positive attitude, a clear outlook on his future and a dedication and love for his family like none I have ever seen before:

What makes me happy, especially over the course of the past 5 years of fighting, is the coming togetherness of people. It’s not just for me, it’s for my family, but it still doesn’t stop there. The people and world I know are of friendship, compassion, love, understanding, respect, humility and strength. The vale of the web and anonymity of the internet creates a personality that isn’t real. People aren’t what is portrayed on the news, nor are people who fight, argue and thrust insults on FB or elsewhere really that way. Yes, we all say dumb things, but we learn. We learn from each other time and time again. If life were easy, it wouldn’t be called living.

In life, real life, people are reserved, respectful and full of compassion. This is the world I know. In all honesty, I don’t think it’s the cancer or my words or any person’s journey. We are led to believe we live in a world full of heartless creatures who have no understanding towards another. This fast paced world has us believe we only think about ourselves. I disagree, and that is not what I see every day. I mean, actually SEE and witness. We are a good people. Don’t ever forget that.

The support network I have is astounding, and it literally humbles me to my very core. It creates a sense of euphoria that not only assists in the mental battle, but the physical battle as well. It creates a situation where I have no choice but to keep moving forward against whatever odds I come across. From initial diagnosis, to rounds of chemo, to surgery, to brain radiation…. I never had a choice to give up. I never had a chance to second guess my drive to succeed and win against cancer.

Lord knows I was beat to a pulp many times by negative news. I have cried more times than I can count. I have held my family so tight and close so many times thinking the worst possible thoughts of death and a life cut short. Through the grace of God and through the love of the people in my life, I have always and am always able to get up, lift my head, and march forward. Together, we have always been in this together.

My happy thought today is the culmination of every single time I have been knocked down, and somebody has been there to help me out. I won’t give up. I cannot give up. For that reason, I am alive in every sense of the word.

Thank you for always sharing you. I love you, the lives you lead, and the love you show. This life is worth fighting for. Always remember that. (April 13, 2014)

Please continue to keep Ryan, Andrea, Landon and Logan in your thoughts and prayers as they go through the next 2 days of doctor’s appointments, scans, blood draws, etc., and GOD WILLING, for Ryan to have the best birthday gift he could ask for – celebrating his 33rd birthday on Thursday, April 16th  with No Evidence of Disease!!!

Posted in Uncategorized | Leave a comment

Birthday Gift – Part 1

CT scan 03-2015Good afternoon, and a VERY happy Thursday to all of you. Part 1 of a 2 part birthday p
resent wish has been filled, thanks be to God!

NED!!!!!!!!!!!!!!!!! Clear scans. No evidence of recurrent or metastatic disease in my chest, abdomen and pelvis! smile emoticon

Life vs. Angiosarcoma – life is winning for us. We are blessed beyond measure. Thank you for loving and caring for us so much and for SO long. It’s an incredible day at our house, and we look forward to Part 2 of 2 next month with my MRI on April 14.

Every time this happens, we get a new lease on life. The feeling is exhausting, incredible, and miraculous.

We love you all, so very much.

Posted in Treatment Progress | Leave a comment

Starting 2015 NED

10425491_10205025616832777_3877645765900042513_nExhausted, but we made it to the airport safely and on time! And…..with GREAT NEWS!

I remain cautiously NED, but NED!!!! What.A.Relief! I cannot begin to explain.

Dr. Li was running 45 minutes behind which caused us to be behind with Dr. Lang. After we finished with both of them, I sent a last ditch effort to Dr. Ravi to see if he was available. Fortunately, he was! We met him in his academic office, and we all hugged with great relief and celebrated the moment! We have been blessed with the most amazing medical team with the most amazing expertise at their disposal. God is good, always. 2015 is shaping up to be a very blessed year.

The plan is to continue on chemo for the short term. Dr. Ravi said 4 months is the limit he’ll go with me on Temodar. He has had patients, especially younger ones, develop leukemia as a secondary malignancy. In case you didn’t guess, we desperately want to try and avoid that situation. ;)

We will be on our way home shortly, and we couldn’t be in better spirits. Thank you God for these life lessons, and getting us this far. Thank you, all of you, for keeping us so close to your hearts.

For those that can make it out to the wine fundraiser this Saturday for our family, we cannot wait to hug all of you, thank you in person, and raise a glass with you to celebrate this amazing year!

We love you.

Posted in Treatment Progress | Leave a comment

First Scan of 2015

Good morning and a VERY happy Thursday to all of you! We just received the phone call and subsequent fax regarding my scans yesterday……

N E D!!!!!!!!!!!

I cannot think of a better way to start 2015 than with the gift and breath of life. I cannot begin to describe the feeling one gets from something like this. There are truly no words to describe it, and trust me, I like words! smile emoticon

One scan down, one very stressful and difficult MRI to go next Tuesday. Unfortunately, the MRI from this time last year is what started it all for 2014. It will NOT be the same situation this year.

It’s going to be the best year yet!

Thanks be to God for giving me the body to endure a tremendous amount, the superb medical team to help defeat this, and the support group that can change the world. Such a miracle this all is……

Thank you for all of the love and prayers. We need them so very much. Houston, look out! Here we come!

Have a very blessed day. We love you all!

Posted in Treatment Progress | 3 Comments

Barre Class Fundraiser (Feb 9)

burn-bright

Burn Bright with the Dailey Method under the chandeliers of The Townsend Hotel ballroom!

Details: Please join us for a special 1-hour barre class in the newly renovated ballroom of The Townsend Hotel. Come early and stay late to network. It is a night to connect – your mind, body & spirit will thank you.

Monday, February 9, 2015
Doors open at 5:00 p.m.
Class begins at 6:00 p.m.

  • Live DJ provided by Star Trax
  • Stay after to enjoy a Skinny cocktail and sample a heart healthy salad from the Rugby Grille.
  • Wear yoga-style apparel and bring a mat if you own one.
  • Every attendee will receive a gift bag filled with an Endless Bracelet + charm and many other great surprises!

Purpose: Though exercise is good for our hearts, we are also joining together to fill the hearts of a very special family. Ryan Humphrey is a Troy native who is battling Angiosarcoma cancer that attacks the inner lining of blood vessels. A large portion of the proceeds of this event will go to Ryan and his family to help with mounting medical bills.

eventbrite_button

Ticket cost: $50 per person.
Complementary coat check available upon arrival.

Main Contributors: The Dailey Method, The Townsend Hotel, Star Trax, Darakjian Jeweler and Lululemon.

Posted in Fundraising | Leave a comment

Wine Tasting Fundraiser (Jan 31)

cover

Please join Ryan’s family for a Wine Tasting Fundraiser Dinner at the Sycamore Hills Golf Club Banquet Hall. The doors open at 5:30 p.m. and dinner will be served at 6:00 p.m.

The cost is  $75.00 per person, which includes a plated 6-course meal with 8 glasses of wines served to compliment each course. Beer will also be available for purchase during the meal.

There will also be a 50/50 raffle, as well as a raffle for great donated or homemade prizes. All profits from this event will go directly to Ryan and his family to help them in this continuous 5+ year battle.

The commemorative labeled wines will be signed by Ryan Humphrey. These will be available in Pinot Grigio, Cabernet, Merlot and Chardonnay.

You may pre-order bottles of wine to be picked up at the event, however, bottles of wine will also be available for purchase at the event. Some wines may need to be ordered to be picked up AFTER the event. More information to follow.

Credit cards, cash and checks are accepted.

Cost is $75.00 per person.
Includes tax & gratuity.
Reservations required. Please call 586-598-9500 extension 2.

sycamore hills


Sycamore Hills Golf Club

48787 North Avenue map
Macomb, MI 48042
(586) 598-9500
www.sycamorehills.com

 

facebookButton

Posted in Fundraising | Leave a comment

Join the Battle: Angiosarcoma

CYCLE2015Please join us for our 3rd year of Cycle for Survival in Chicago!

donate_btn       join_btn

  • When: Saturday, February 21, 2015 (1pm-5pm)
  • Where: Equinox The Loop, 200 West Monroe Street, Chicago IL 60606
  • Who: ANYONE! We are raising funds to support research for Angiosarcoma.
    Whether you are near or far, you can join us by donating to our team.
    Feel up for a fun challenge, click here to join our team and ride with us!

We’re riding in Cycle for Survival to raise money to fund lifesaving rare cancer research at Memorial Sloan Kettering Cancer Center. Together we can ensure tangible progress and give real hope to patients and their loved ones worldwide.

Here are two important facts you should know:
100% of every dollar you give will go directly to pioneering research within six months of the events AND is tax deductible.

Cycle for Survival has contributed to more than 100 clinical trials and research studies, and also to major research initiatives that will change the way cancer is diagnosed and treated.

donate_btn       join_btn
To join the team, you will need the team password: curecancer
mskcc.convio.net/goto/BattlefieldAngiosarcoma

If you have any questions about making a donation, sponsoring our team or joining the ride, please contact Ryan Humphrey (517) 242 – 8146, r0humph1@gmail.com.

Posted in Fundraising | Leave a comment

The Best Gift

Hello everyone! I just wanted to post the news that was received this week when Ryan traveled to Houston for his 6-week post-op scans. He will be posting his own update soon.

scans
(click to enlarge)

Posted December 6, 2014 at 11:06 from Houston:

MD Anderson’s entire computer system was down so the consultation was delayed a while, but eventually it all came together. The results are in, and I am, once again:

NED!!!!!!!!!!!!!!!!!!!!!! It’s an unbelievable feeling, and nothing really compares. It’s truly incredible.

No evidence of disease!! The scan results were amazing.

Thank GOD!!! And thank you to all of you for continued prayers and love. You are truly amazing.

Posted in Treatment Progress | 2 Comments

Art for a Cure

Brooke B. Ogorek, a very good friend of Ryan’s, has put together an amazing art auction, of which ALL FUNDS RAISED will go directly to Ryan & Andrea.

The page with the artwork can be found at www.facebook.com/RaiseforRyan.

The Bidding Process

  1. Click on photo of the piece that you would like to bid on. You will see a description of the item, as well as the opening bid amount and bid increment.
  2. Please COMMENT on the photo with the amount you would like to bid as well as your email address.
  3. The auction will end on Sunday, December 7th. At which time, the highest bid amount will be the winner.
  4. Send payment by clicking here. You can pay with Credit Card / PayPal or mail a check.  An email will be sent to each winning bidder at the end of the auction with final instructions.
  5. Once payment has been received and cleared, your item will be sent to the address you request. The cost of shipping & handling has been included in the bid amount.

This is a Facebook-only art auction. If you do not have a Facebook account, please contact Melissa Chinn (605) 310-7563 or email info@eyeonyoudesigns.com and she will help you with the bidding process.

Posted in Fundraising | Leave a comment

On The Move!

Good evening again from Ryan’s hospital room! Today was a good day! The boys and I arrived at the hospital around 10:00am and were very surprised to be met by Ryan at the front door. What a great welcome! The boys gave him hugs and took some pictures and then we took a walk around the hospital. Ryan needed to sign some papers at the Sarcoma Clinic so the boys and I tagged along. While we were there, Dr. Ravi (oncologist) stopped by to say hello! The boys got to see Ryan’s room and stayed for a little while. It is so nice to see him up and moving around!

He is now unhooked from all the machines except his IV. They still use it to push the steroids. It’s so nice for him to be able to walk without pushing around an IV pole! The neurosurgery team came by this morning and changed his bandage and took out the drain.

This morning he received great results from his MRI. The radiologist report stated that the large lesion has been completely resected with no evidence of residual tumor. It couldn’t have went any better! :)

The good news just keeps coming! If everything continues the way it has, Ryan should get released tomorrow! He will also be able to take off the bandage around his head. I’m sure that will be much more comfortable. They wrap it very tightly and he said it’s starting to itch.

Thank you again for all the good thoughts, prayers, and messages! We have such an amazing support system. I’ll update again tomorrow, but I have a feeling my days as a guest blogger are numbered! :)

Posted in Treatment Progress, Uncategorized | 9 Comments

Day After Surgery

Good evening to all our friends and family! Thank you again for the continued messages, support, and prayers. They are amazing and much needed! As I am typing this, Ryan is still in the ICU. Dr. Lang has put in the order for him to be moved to the neurology unit, but he hasn’t been moved yet. We’re hoping sometime this evening!

When I got to the hospital this morning, the rehabilitation team was getting Ryan up and walking. He did such an amazing job! He walked about 100 feet and had no issues. They didn’t want to push him too much today. When he got back to his room he sat in the recliner and has been there ever since.

Dr. Lang came in first thing this morning to check on Ryan and change the bandage. They also removed his catheter and arterial line which was being used to continuously monitor his blood pressure. He still has two IV’s (only 1 is being used), pulse/oxygen monitor, telemetry monitor, and the drain coming from his incision. He is being monitored very closely!

At 5:00 this evening he will go for an MRI to check for any issues and it will show if the whole tumor was successfully removed. I’ll post the results of the MRI tomorrow.

As far as pain goes, he definitely isn’t pain free, but they have been able to keep it under control. He takes tylenol on a regular schedule and has only had to use stronger pain medication once last night. He is also on a pretty high dose of steroids to reduce the swelling in his brain. One of the side effects is not being able to sleep. He hasn’t been able to get much sleep the last 2 days. :(

It has been a relatively quiet and uneventful day and we hope to keep it that way! I will post an update tomorrow and hopefully by then he’ll be out of the ICU! Thank you again for following our story and keeping us in your thoughts and prayers! :)

Posted in Treatment Progress, Uncategorized | 7 Comments

Surgery Complete

Good afternoon everyone! I was hoping to never be in the position of guest blogging again, but not quite 2 years later here we are. First, I want to thank everyone for all the emails, texts, and phone call and prayers for both Ryan and I. It has kept my mind occupied during the very long wait today. When he is able, Ryan will love reading all the emails and texts on his phone. All the support and prayers mean so much to us!

Today started off bright and early. We were out the door at 4:45am for the walk to the hospital with surgery check in at 5:15. It was a very long and tough walk for me thinking about all that Ryan has to endure today. On one hand I’m so thankful surgery is an option for him, but I also feel helpless he has to go through yet another major surgery. He checked in and was immediately sent to a pre-op room to fill out more paperwork, meet with OR nurses, and anesthesia. They checked all of his vitals and inserted an IV. I was very impressed with his blood pressure! If I was about to have surgery on my brain, my blood pressure would have been very high! Everything was finished up a little after 7:00am and they wheeled him out of the room and down to surgery.

At 10:00am we received the update that surgery began at 8:25am. They had just made the incision and were still entering the brain. No tumor excision had started yet, but Ryan’s vitals looked great! They figured the surgery would take 6.5 hours.

At 12:00pm we were told the tumor was out and they were working to close him up. His vitals still looked great and Dr. Lang would be up to speak with us in an hour or so.

A little after 2:00pm, Dr. Lang came up to update us on how the surgery went. He said it went as well as expected and he was very pleased. He was able to remove the tumor in one piece. Ryan was moved to the ICU and I was able to go in and see him! He was awake and able to talk. I can’t begin to say how relieved I am!!! Its been a very long day of waiting and it feels like 100 lbs has been lifted off my shoulders. I will update again today if anything significant happens. If not I plan to update once a day to let everyone know how his recovery is going.

Thank you again for all the messages, prayers, and support! We appreciate it more than you could ever know. :)

Posted in Treatment Progress, Uncategorized | 25 Comments

Craniotomy Today

Thank you ALL for your love and support. You all definitely define the word “support”. It’s become such an important thing on this journey – more then I ever thought was possible. It’s like a crutch to lean on, air to breath, or just pure hope and encouragement in the darkest of times. I thank you, from the bottom of my heart, for not only exhausting yourselves in supporting me, but for helping me lift my beautiful wife and sons up in prayer and support. We love you. Very, very much. Reading your outpour of love and dedication to us is humbling, rewarding, encouraging, and gives us untapped strength. Amazing.

On Monday, October 27, I had round 47 of chemo, and it will be the last one for a month or two. Hopefully, my body recovers and heals quickly, and I can start up systemic treatment soon after surgery.

Many have asked what the surgery will entail. YouTube provides both animation and real life videos of this surgery. I will share a very simplified animation. Feel free to Google “craniotomy animation” for other examples.

Craniotomy Animation: http://www.methodisthealthsystem.org/body.cfm?id=3408

We prepared as much as we could. I shaved my head. I had my neighbors draw on me (who does that?). We paid for this trip. We will now have a tissue sample with correct pathology and genetic testing (and tissue samples for this disease are like gold). And, God willing, we will be cancer free when I wake! Please continue to pray for steady hands and a successful, LONG-lasting surgery!

fiducial markers placedYesterday was a full day. We had a consultation with Dr. Lang (neurosurgeon) to discuss the surgery and what can be expected. After, we followed up with blood work, EKG, chest X-ray and an MRI to map out the lesion and plot the surgical course. I had fiducial markers placed around my head (6 of them). These markers are essential, and they have to remain on until surgery. They are used in conjunction with the MRI to map out the surgical plan. They assist the surgeon as coordinates to reference while operating on me. So, I have never been so still for an MRI!

We went grocery shopping after dinner to pick some things up to keep food costs down for the time we will be here. The looks you get are nothing out of the ordinary. The looks I give back are extraordinary. Laughing is the best medicine!

Tuesday, November 4 Surgical Schedule (Central Time):
0515 Checkin in for surgery
0700 Craniotomy
Surgery should be around 5-6 hours.

For those who have inquired, my surgery is taking place at MD Anderson Cancer Center in Houston, TX.

In 2013 when I underwent a left sided complete pneumonectomy (complete removal of my left lung,  I wrote a letter to “each” of you explaining my feelings towards you. It is a description that should make you cry and laugh at the same time because of the emotions it invokes. It did for me. Feel free to read all the letters, or just the one you feel pertains to you. It is important to me that you know how I feel about not only you, but everybody else sharing this ride with us. Each letter is free to be read by you all.

A Letter To My Amazing Wife

A Letter To My Beautiful Children

A Letter To My Wonderful Family

A Letter To My Loving Friends

With the help of all of you, the financial support through GoFundMe continues. Humbly, we cannot thank you enough for your amazing generosity over the last few days since the GoFundMe fundraiser was started, as well as all that have pledged to start or consider doing fundraisers. Through all of your collected efforts in just over 2 weeks, we have surpassed $20,000 and still going strong! That is incredible. As a side note, we are raising this money not only for this current surgery and “vacation” at MD Anderson in Houston, but the many more anticipated trips to help offset medical bills and to help with our every day expenses.

Andrea with the help of Melissa/family will update via Facebook and our family website as much as possible. Please be patient. Personally, I don’t expect them to update much if at all during surgery. They will be getting updates randomly, but those will be vague and consist of vital sign updates and remarks upon how amazing my big brain is! I promise they will do an amazing job of informing you all when the time is right.

We love you all! Please say some extra prayers for us.

Posted in Treatment Progress | 5 Comments

Determination. One Step at a Time.

GENERAL-FLYER-2

Click on the image to enlarge and/or save.

Hello everyone. First of all, thank you for the amazing support that has already been shown for Ryan and Andrea. Its hard to believe that in 10 days we will be on our way to Houston for Ryan to undergo open brain surgery. The thought takes my breath away.

My hope and mission is to raise as much money as possible to help with the medical and daily living expenses not only now, but in the future. This is such a heavy burden for Ryan and Andrea, and it is really the only way and thing I know to do at this point.

We have created this flyer, and I am willing to print them out and mail to whomever would like to pass them out.

  • If your company sends out monthly statements, I will send enough for you to include in  them.
  • Is there a grocery store in your area that would allow you to place a flyer in each customer’s grocery bag?
  • Does your church allow non-member fundraiser information to be sent out in bulletins?
  • Community bulletin boards at stores, restaurants, churches, etc?

If you are interested, please send me an email at m.chinn@cureasc.org and I will be happy to get them sent out to you as soon as possible.

In addition, here is a more simple flyer that strictly promotes the GoFundMe fundraiser. You may view and print the flyer here.

Last but not least, please click on the GoFundMe link and share it with your Facebook friends. We need to get the word out!
http://www.gofundme.com/RyanHumphrey

Posted in Fundraising | Leave a comment

Great Skin – Great Cause

emmyMeet our friend Emmylynn Castillon.

Emmy is a high school friend of Ryan’s, and an Independent Consultant for Rodan + Fields skincare products. Emmy has offered to to give 50% of her earnings from Rodan + Fields directly to Ryan!

RodanFieldsLOGO

Anyone who signs up as a PC Perks Member, 100% of her earnings from those PC Perks orders will go to Ryan, PLUS receive:

  • PC_Perks_logoInsider information, special pricing, superior service.
  • 10% off* all Rodan + Fields products, all the time.
  • Free shipping on regularly scheduled orders,**
  • Enhanced Customer Service, exclusive PC Perks hotline a quarterly e-newsletter especially for you.
  • Exclusive Preferred Customer promotions.

Rodan + Fields offers everyone clinically proven products, expert support with the RF Connection, and cutting-edge skincare information. And with our exclusive PC Perks program, enhanced benefits and even greater value are just a few clicks away.

Activate all these perks and the convenience of timely automatic delivery of your favorite Rodan + Fields products with a one-time enrollment fee of $19.95 (waived by Emmy) and your first purchase of $80.00 or more. Read details.

WIN $100 IN FREE PRODUCT
Each person who places an order between now and December 1st will have a chance to win a $100 Gift Certificate to put towards a future Rodan + Fields purchase!

rf-learnQuestions??
ECastillonRF@gmail.com
Instagram: ECastillonRF
Facebook: Facebook.com/ECastillonRF

Posted in Fundraising | Leave a comment

Raise for Ryan – How to Help

To say Ryan and his family is an inspiration, is an understatement at it’s fullest. Aside from the fact that through all of his diagnosis and treatments in the past 5 years he has kept a positive attitude, he also is a loyal, honest and respectful friend. In some of my lowest and depressing times, he always seemed to know when to reach out and just say “smile” or send me a photo on Facebook book that would make me laugh.

And so his fight continues. As does his concern for the future of his wife and two sons, should the day come that they must continue without him. Not only has Ryan been on a Leave of Absence from American Airlines, making it a one-income family, but he also got the dreaded word in September that he no longer will receive his flight benefits – adding to the already high cost of travel to his doctors in Houston and New York City.

As if the day-to-day cost of living and traveling doesn’t weigh on them enough, Ryan does not have life insurance. Four months before his initial diagnosis in 2009, he canceled his life insurance with his company in the belief he was covered under his wife’s. He did not do his due diligence and has had to live with it everyday. Needless to say he is now un-insurable without paying a hefty price.

I am just one of many that will be raising money for Ryan and Andrea. It is not a short term need either, it is ongoing. I made a promise to Ryan that I would help raise as much money as possible, with the goal being to pay off their mortgage, vehicles and student loans. His biggest fear is that his medical bills and travel expenses will bankrupt their family, and he refuses to do that.

If you have any questions, please feel free to contact me. Melissa Chinn (605) 310-7563 – text preferred, email me at m.chinn@cureasc.org or send me a Facebook message.


Donate through Paypal: 
You do not need a Paypal account to utilize this route


Mail check or money order to:
Make payable to:  Ryan Humphrey Donation Trust, Acct# 3750 1133 9071

Ryan and Andrea Humphrey                                           Bank of America
PO Box 453                                               OR                     820 Charlevoix Dr., Suite 280
Grand Ledge, MI 48837                                                   Grand Ledge MI 48837

Deposit at any local Bank of America
Ryan Humphrey Donation Trust
Account Number: 3750 1133 9071

gfm_logo_470px


The PayPal donation and goFundMe donation both are a fee-based service. The fee varies from 3-9%. The only way to make a non-fee donation is to mail a check directly to Ryan or make a deposit directly to their Bank of America account. If you have specific questions, please feel free to contact me. Thank you so much for your support.

Posted in Fundraising | Leave a comment

From Left Field…….

­­­Good morning everyone. I hope you are all having an amazing week, and that you continuously can find something to smile about.  This life is a wild ride, and we never know when we will get a break and a chance to catch up with what is going on so make the best of it.  As for us, there is no breather in sight yet but for reasons somewhat unforeseen.

First and foremost, the most exciting aspect of this week’s trials and tribulations is that the PET/CT came back as clear.

If you want to read the official PET report:  October 14, 2014 PET

This is very exciting news, but one that was very short-lived – if you can say it was celebrated at all.  Please do not confuse any of this with us not being grateful and blessed for this amazing result, but had you noticed I did not use the term NED, it is because we were hit from left field. When that happens, I first shut down.  I sulk for a bit.  I confer with those closest about what to do, and we go into scheduling and planning.  We are still in scheduling and planning mode.

With that said, the day of the scan went very smoothly. Rather, the morning went as smoothly as I anticipated.  I had a very nice conversation with the technician who is fighting her own demon of ovarian cancer.  After so many scans and so many years, we all start to become a big family and openly share our lives.  Following a very routine scan, I had a nice, long conversation with a nurse turned amazing family friend about life, kids, etc.  I was taking my time because I didn’t have much to do since I couldn’t be around my children until later that evening due to the radioactive nature of my PET injection, its half-life, and the rapidly reproducing and growing nature of my children’s normal cells.  I felt good.  I felt as if there was a shimmer of light, and things might calm down for a bit.

I was wrong.

The very moment I sat in the car of the parking garage, I received a phone call from Houston. It was the generic number for them, but it was a call I was expecting.  However, the news I was not.  I had no reason to expect it.  The MRI was a done deal, or so it seemed.  The week prior the one physician we could not meet with was our neurosurgeon, Dr. Lang.  He was out of the country for the week so we would have to wait for his interpretation of the scan.  I emailed his team at the beginning of this week for any sort of update, and this was the call I was expecting.  We had no reason to believe anything would change as the report was read as just watch the large lesion.  Our radiation oncologist, Dr. Li, was not overly concerned about it.  Lastly, Dr. Ravi voiced no panic over the lesion in question.

However, Dr. Lang disagreed wholeheartedly with all parties involved.  His nurse, Cheryl, was the one I spoke with and whom delivered this news.  He strongly believes the large lesion progressed and wants to operate on it soon.  They wanted to schedule the surgery right then and there, as I was just getting out of my PET scan sitting in my car.  I still had no idea about the PET report, but here I am about to schedule open brain surgery.  What.  Just.  Happened?!

I told her I would call her back later as I had many emails, texts, and phone calls to make.

I called my Houston oncologist, Dr. Ravi.  He didn’t answer, but responded with a text a few minutes later wondering what was wrong and said he was in Germany.  I informed him of the day that turned drastically south, and he sent out an email for Dr. Lang to contact him.  I am unsure if they ever spoke, but receiving a text from Dr. Ravi that says “Don’t start the temodar.  Go to surgery” says enough for me.

In summary, the PET report was clear, but I will now be having open brain surgery in just 2.5 weeks down in Houston.  I have a consult with Dr. Lang and anesthesia as well as a mapping MRI on November 3, and the surgery is scheduled for November 4. I am planning on being down there, recovering, for most likely 10 days to be on the safe side. I know there are a lot of questions.  I have a lot as well, but they will hopefully be answered as time moves forward.  In the meantime, we have to scramble to get things taken care of and have all our affairs in order.  I no longer have my flight benefits with my airline so our medical costs just went drastically up.

After 5+ years, not a single thing in regards to my case is getting easier. We are actually traveling more now.  As a side note on all of this, we need help, and it takes a tremendous amount for me to admit this.  Some amazing friends are getting things underway for us.  If you have any inclination to help or have any ideas of your own, I put down my pride and humbly ask for any assistance.  I will not bankrupt my family.  I just cannot do that to them, and we need to get ahead of this before it’s too late. As for me, I have surprisingly not shed a tear over this yet.  Denial?  Possibly.  Honestly, I think it’s just shell shock right now.  Ask me how I’m doing on November 3 – the night before surgery.  I may paint a different picture.  I just want my family taken care of.  It’s all I ever want.  It’s all I really ever need to get by on this journey, but it is taking a toll on our family as of late.  Please pray for peace, understanding, and continued faith.

This news is shocking and disheartening to say the least, but it doesn’t take away my “every day”. What do I mean by this?  I can still walk. I can still take care of myself and help my wife raise our boys.  I can still take Landon to preschool every day, and watch him learn and grow.  I still have my precious one-on-one moments with Logan while Landon is at school.  I can still exercise, and I feel great physically.  It is not going to take me without a fight!  Or should I say war since it’s been so long of a battle?  Either way, I still have a strong will to live.

We are blessed beyond all measures in the grand scheme of things. After the shock, this surgery itself is a blessing.  Not all brain tumors are operable.  Not all brain tumors are in a relatively “safe” location as mine is.  It is still a very serious surgery, and it most certainly doesn’t come without severe risks.  However, it’s the course we are plotting, and we will do it together. One day at a time, and thankfully, we are not in this alone.  Not by a long shot.

We thank you for your patience in all of this.  We will update you as things unfold.  If you have any questions, or any ideas on how to help, please let me know.

We love you all so very much.

Posted in Family, Fundraising, Treatment Progress | 11 Comments

Thank You For Your Continued Prayers…..

Good morning, and a very happy Friday to all of you beautiful people. Once again, thank you for all of your love and prayers each and every day. It is my honest and humble opinion that your unwavering support is what gets us our miracles and allows us to fight each and every day. We truly love you all.

First, I hope it is well known by now that no matter the news, good, bad, or indifferent, I/we will share it with the utmost honesty and as quickly as possible. I mention this only because it may take us a day or so to update everybody due to additional appointments, scrambling to get from one place to another, and most importantly, sheer exhaustion. I mention this disclaimer provoked only by my own conscious because I regret not updating everyone as soon as possible.

As for my results, they were very good. God has blessed us and continues to bless us with miracles on His own time. I’ll explain what this means in a minute. For those that are curious, my official MRI report can be found here:

October 8, 2014 MRI – MD Anderson Interpretation

When praying, hoping, and dedicating moments to God and ultimate healing miracles, it is sometimes hard and complicated to see what exactly has been answered. Sometimes it may miss our sights; other times it takes a while to see. While we always hope and pray for remission, cure, squeaky clean scans, and the like, the reality is these scenarios rarely happen on such short notice, especially against an aggressive and multifocal disease such as angiosarcoma. It is sometimes hard to align our idea of a miracle with God’s actual miracle. Acceptance in the unknown, faith in God and prayer are essential parts of this equation.

For those who didn’t jump on the MRI report above and continued to read my rambling prior to any updates, there were no new spots discovered. Furthermore, there was no increase (or significant increase) in the large treated lesion in the medial frontal lobe. As for the previously treated smaller 2 lesions, they remain stable or decreased slightly in size. Not only are these findings important on the efficacy of GammaKnife (nothing was considered progression of disease), they are crucial in the continuance of my current chemo regimen of Taxol. Had there been any progression (new lesion or blatant growth of a previous lesion), all bets are off with Taxol, and we would have had to scramble for a new therapy. However, this is not the case!

As we would truly have hoped for a decrease in size of the larger lesion, it is not necessarily a sign of anything bad as of yet. We have to get through 1 or 2 more monthly MRIs to consider surgical intervention on this lesion. Although the size is about the same if not slightly larger, the way it contrasts is different indicating possibly a good response to GammaKnife. Due to the initial size prior to treatment, it can be expected to fluctuate in size for a period of time due to edema and inflammation. Without physically going in via a surgical approach, we will never truly know the state of any lesion. We rely on scan comparisons to determine the state of disease. With that said, all of our consults went very well in the aspect that all the physicians feel this is a step in the right direction (we have yet to speak with the neurosurgery team as Dr. Lang is out of the country).

As of now, we will have to continue close monitoring of the brain. The concerning aspects (and why this isn’t a grand slam follow up) is the increase in edema (swelling) surrounding the large lesion and the hemorrhagic component (active bleeding) within the large lesion, both of which can cause problems if they don’t subside and retreat soon. These could be signs of treatment response or signs of treatment failure. Time will tell, but our medical team feels confident that treatment is working.

Going forward, this follow-up undoubtedly indicates we can continue on weekly chemo treatment of taxol. In addition. we had mentioned a month or so ago the possibility of adding Temodar thus creating our own single case study of the combination of taxol/temodar. This drug has been approved by my insurance, and Dr. Ravi thinks it is a great idea to add. We will be adding this drug starting Monday night.

The importance of temodar is it’s ability to cross the blood-brain barrier in significant quantities. This barrier is somewhat of a protective fortress for your brain. It is quite an impressive feat of biology, but in my case, it has been comprised. My disease has penetrated and taken up residence in my brain. In some circles, it is felt that once comprised, chemo drugs may have an easier time getting through that would not have otherwise been significant across the barrier. I’m not entirely convinced of this fact, and it is the sole reason for me pushing for the addition of Temodar.

Systemically, taxol is quite effective against angiosarcoma. Within the central nervous system, the efficacy is drastically reduced due to its inability to enter in any appreciable amounts. In essence now, we are using a drug that has great systemic response (taxol), and one that has a great response across the blood-brain barrier (temodar). The only caveat is the literature doesn’t have anything of significant value in the response and efficacy of angiosarcoma and temodar, let alone the combination of taxol and temodar that hasn’t been tried yet. As long as we can keep this disease at bay, we are doing well. I can live, literally and figuratively, with fighting a chronic disease.

We can breathe a short sigh of relief as hurdle 1 of 2 has been surpassed. Unfortunately, the stress will soon mount again as I have my follow-up PET/CT scan this upcoming Tuesday (Oct 14) at 745am to determine the status of disease throughout the rest of my body. For refresher, my last PET/CT scan showed NED everywhere else besides my brain. Please pray for peace, comfort, and a clear scan on Tuesday. Please pray for efficacy and minimal side effects from adding temodar next week. Please pray for strength and determination to continue this fight. Please pray for Andrea, Landon and Logan that this fight

Life is what you make it so don’t waste a minute sulking. Cry when you need to. Scream when you must. Just don’t forget to smile. Don’t forget to search for that which is good in this life because we only have one shot at doing it right amidst the mountains and valleys in our way. And this one shot is short and delicate. It isn’t always easy, and it certainly isn’t always fun, but it is always worth it. As you constantly and without hesitation always show my family and me, please know you are never alone in life. We are all here for each other.

We love you. Very much.

Posted in Treatment Progress, Uncategorized | 4 Comments

Mason Jar Fundraiser

mason_jarIf you have free time next Saturday (9/27), please drop in for one of two (or both) charity yoga classes (11am and 1230pm).

I have been doing a poor job in helping them spread the word with all the news and happenings as of late, but please know we appreciate this opportunity to help our family more then you will ever know!

The Mason Jar fundraiser is to raise donations for my family to help offset the ever mounting costs of this ridiculous and expensive cancer journey. There are 1, 2, and/or 3 ways you can help if you have time.

1.) Mason Jar – please consider placing a mason jar in your local business, other businesses around town, etc. to collect for this fundraiser. The donations collected can be brought directly to The Dailey Method studio in Birmingham or mailed to the studio (The Dailey Method, 34665 Woodward Ave, Birmingham, MI, 48009).

2.) The week leading up to the charity classes (9/21 – 9/27), the Dailey Method studio in Birmingham will donate any drop-in class ($20) or news tudent 3-pack ($45) purchased to our family.

3.) Lastly, please consider attending one of the two charity classes on Saturday, September 27 (11am and/or 1230pm). I will personally attend and be participating at both, and I would love to see you all and thank you in person!! It is by far the single most important exercise routine I continue to do. It is literally a life saver for me on this journey!

If you have any questions at all, please do not hesitate to contact Carly, Candace or myself. At the very least, please help me spread the word.

I love you all very much!

Posted in Fundraising | 1 Comment