Back From Sunny Seattle

Hanna and I just returned from Seattle yesterday and are still in recovery mode after a quick journey from coast to coast and back.  I was discharged from Georgetown after a week of chemo on Friday and then on Sunday we headed to the Evergreen State for our Monday consultation and tours of the Fred Hutchinson Cancer Center which is a part of the Seattle Cancer Care Alliance (SCCA).  After a smooth flight we rented a brand new red Ford Fusion to cart ourselves around Seattle.  We were impressed with the SCCA house lodging, which is a part of the Cancer Center and an apartment complex for patients and caregivers.  It has a  zen garden, media room, library, common lounges and each apartment has a small kitchen.  The people were great and it was a perfect place to get some good rest before a very long day on Monday. 

Monday started very positively when we met an older gentleman on the shuttle who was back for his 7 year follow up after his bone marrow transplant.  He had great things to say about the center and the whole transplant process.  This guy really was inspiring and helped fill us with all sorts of good positive vibes.  The clinic is an extremely efficient and well-oiled machine that cranks out transplants like crazy.  Our first appointment was with Dr. Paul Martin for our initial consultation.  He is a brilliant doc who has been working in bone marrow transplants for over 35 years; however, he did not have the warmest bedside manner.  He was definitely a statistics guy and spent the first good hour dwelling on the percentages associated with transplants and going into way too much detail about the technical aspects of what exactly takes place.  He didn't give us any information that was new; it was just his matter-of-fact way of talking about numbers that was extremely overwhelming and very depressing.  After a whirlwind of numbers and details, he told us about all the wonderful benefits of having the transplant in Seattle.  This place has been doing transplants since they were invented and all of the doctors and nurses focus 100% of their time on the care of transplant patients.  The whole building is designed to give people who need marrow transplants the best shot possible.  After a tough start to the day, Dr. Martin echoed a thought that we have had since the beginning of this whole journey.  He said, "For you, percentages do not matter.  You will either be 0% or 100% and there is no reason that you will not be the 100%".  We're hanging onto that.

After meeting with the doctor, we met with a financial representative who was wonderful and will help us through the mountain of insurance paperwork and everything along with relocating.  Then a nurse gave us a tour of the clinic which included a library, cafeteria, many lounges, a kitchen stocked with food and drinks for patients receiving treatments, and a business office where you can use computers, printers, fax machines and whatever else you might need while you are there.  Around every corner was another person welcoming us and making us feel like we would be taken care of and loved during our time there.  It is inspiring and hopeful to know that our care will be so comprehensive and that there truly is a building full of people that will help us through every step.  Knowing that all of the patients there were going through similar treatment gave me a new sense of hope that we'll all be fighting this together.

Having enough cancer talk for the day, Hanna and I were ready to explore Seattle a bit before heading back to the airport to catch the red eye back to DC.  Developing our habit for beating the odds, we had a beautiful, clear, and sunny day to check out the city.  We walked around Pike Place Market with drinks from the first ever Starbucks, ate kabobs while catching some sun in a beautiful park overlooking the water, and took the touristy trip to the top of the Space Needle.....which was extra amazing because of the clear day.  We had great views of Mt. Rainer, the entire city, and all of the distant mountain ranges.  The last stroke of luck for the day came at the airport when we got moved into the exit row for the long flight home which translated into actually being able to sleep all of the way.

For now the search is underway for a suitable bone marrow donor.  Being of northern European descent is an advantage since the matches are tied to ethnicity, but it is still like trying to find a needle in a haystack.  It is so important to have a massive pool of potential donors so that everybody that needs a match can be paired.  If you have not joined the marrow registry yet, it is really simple and can be a lifesaving choice (I can't stress that enough).  My match finding process should take 4 to 6 weeks and, in the meantime, we will be back in DC waiting and continuing to get chemo at Georgetown to keep me in remission.  If a good match is found, we could be headed out for the 3 to 4 month process sometime in July.

This whole situation continues to be terrifying, overwhelming, and exhausting; yet, at the same time, it has affirmed the power of prayer, the importance of hope, and the amazing force of love in this life.  The love of my beautiful wife, my family, my friends, and complete strangers continue to force out and overpower the sadness and fear when they try to creep in.  It gives me hope and makes it clear that my success will be 100% and that.......

ALL Will Be Well

"Say you were standing with one foot in the oven and one foot in an ice bucket.  According to the percentage people, you should be perfectly comfortable."

“Love is the foolishness of men, and the wisdom of God.”

A Bedside Update from Georgetown

Since I last wrote we have been speaking with people from the University of Washington and the Fred Hutchinson Cancer Center out in Seattle to make plans for moving forward.  The first step is to head out there for a consultation.  My amazing bride Hanna and I are leaving on Sunday for a quick one day meeting where we will meet everybody in Seattle and get a better picture of what will happen next and where we will be spending 3 or 4 months.  We are really excited because it will make this whole next leg much more real (that and we will get to see the first Starbucks and maybe toss a fish or two around the market).  We will meet with doctors, nurses, financial representatives, the donor search team, and take tours of the outpatient and inpatient centers as well as the long term housing options that are affiliated with the hospital.  It will put us in a much better place toward knowing what we are about to step into. 

In the meantime, Dr. Broome, as well as the docs out in Seattle, want to make sure that my leukemia stays in remission so I have been admitted at Georgetown all week getting another round of chemo.  This is more preventative than anything but it is the same regimen of drugs that I received last month here at Georgetown.  The timing of our permanent trip out to Seattle depends on how quickly an unrelated donor can be found from the bone marrow registry and how quickly everything gets set for us out in Seattle.  After we get back from our consult, I'll recover for a week or two from this chemo followed by at least one more round here at Georgetown.  Ideally, after that next round of chemo, things will be ready in Seattle and we will be able to head out sometime in July.  It feels good to know that all these balls are rolling and that we are getting closer to a final step and a FINAL CURE.  Until then, patience, prayer, perseverance, and positivity is the name of the game.  The odds are slim of being a marrow match with somebody so the system runs best for everybody if there are tons of people registered to be donors.  It really saves lives and is not much of an ordeal for the donor.  If you haven't, I encourage everybody to look into getting typed so your name gets on the registry (it's a simple cotton swab on your mouth - totally painless).  The registry is the resource that helps save people's lives all over the world.  How cool would it be if my situation helped save someone's life who needs a transplant just like me?  Get more information about becoming a donor at Be the Match Registry here: http://marrow.org/Join/Join_Now/Join_Now.aspx

I can't say enough about the support system that has helped Hanna and I through every step in the last 3 years of my battle with leukemia.  Since June 8, 2009 when I first got the news, our support has never wavered.  We've had visitors, meals, cards, phone calls, and a massive amount of love sent our way.  These are the things that make the day to day manageable and inspiring.  A huge thanks to my cousin Vikki who has organized a fundraiser that will help us with our expenses as this battle heads west to Seattle.  Her support and the generosity of everybody who has donated is overwhelming, and we are forever grateful.

Well, my day at the hospital is passing along with excessive amounts of the game show network and crossword puzzles so I guess I better get back to this episode of Lingo!  I will be discharged tomorrow and then off to Seattle on Sunday!  Much love, God bless, the fight goes on and......

ALL Will Be Well


“Abide in peace, banish cares, take no account of all that happens, and you will serve God according to His good pleasure and rest in Him.”

Cocktails and Remission

First of all, Happy Memorial Day to everybody.  It was a beautiful weekend and I hope everybody got to spend it with family and friends, but, most of all, we should all take time to remember the heroism of those soldiers who were never able to come home.  We owe them a debt of gratitude that can never live up to their sacrifices.  Thank you to all who serve and have served in the armed forces.

So, I will start with some great news.  On Friday, Dr. Broome let us know that the chemo worked amazingly and that my cancer is back in remission....where it belongs.  This was a piece of great news because it was a fear that I would never be able to return to remission.  When leukemia relapses after an initial remission, it is much more difficult to get into a second remission because the leukemia cells develop immunities to the chemo and are often difficult to kill.  So, the first round of chemo worked and my cancer is officially gone and out of my system.  The unfortunate thing is that there is an extreme likelihood that since I relapsed once, I would relapse again without further treatment.  This is why they can't just let me go even though all the cancer is gone.  The best bet for a long term cure is a bone marrow transplant.  The remission was critical, though, because a transplant will not be successful unless the leukemia is in remission.  This means that we can finally look toward the next big step, which is getting the transplant at the Fred Hutchinson Center in  Seattle.....I have already broken out my 1995 Pearl Jam/Nirvana mix tape in preparation!  The transplant center should be contacting us this week to set up a consult in the near future where Hanna and I will fly out  and make a plan for this 100 day process. I will likely receive another round of chemo here at Georgetown to make sure I stay in remission while the Seattle people find a donor and set things up.  The news of achieving this remission was a fantastic way to start the weekend and was the best we could have hoped for after only one round of chemo.

On another happy note, four of our amazing friends organized a happy hour fundraiser to help Hanna and I with many of the extra bills and expenses that this ordeal has brought.  Justin, Alison, Trisha, and Jodi went way beyond expectations with Cocktails for a Cause.  It was a happy hour at a local bar where so many of our family and friends were able to gather and support us financially, emotionally, and just with good company.  It was overwhelming and inspiring to be surrounded by such love and goodness and we cannot begin to thank the  four of them and everybody else who attended or supported the event.  It was yet another reminder of our extreme blessings and the strength that time with loved ones provides. 

Hanna and I were also able to make it home to Pennsylvania this weekend which was healing in its normalcy.  We visited with our family and friends, swam in the neighbor's pool, barbequed, watched sports, and just enjoyed being home for the long weekend.  It was the most active I have been since recovering from the infection I had and, for the most part, I was able to hang in there and be myself and almost forget about all of this cancer nonsense for a few days. 

Now we are waiting to hear from the Fred Hutchinson Center to plan the next steps of this journey.  The past week has inspired us with the continuing outpouring of love and energized us to face what is next.  Thanks you for the love and prayers.....they are what keep us going and make us certain that...

ALL Will Be Well

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival."

A Trip to the ICU

It has been a very eventful month since my last blog.  Cycle II took about 5 days with tons of chemo, but caused minimal side effects other than fatigue and more hair loss.  I was sent home to recover until a biopsy a few weeks later after my body had time to recover.  On May 3^rd, I had a regular check-in with Dr. Broome and went home, only to go right back because I had a temperature of 101.5 (I’m instructed to call and head to the hospital if its over 100.5).  I was pretty bummed that I had to be admitted, but not worried (I needed a break from the hospital meatloaf).  This “neutropenic fever” happened twice before and meant spending 4-5 days in the hospital on antibiotics.  That evening, I got extreme chills that I was unable to shake even with a zillion heated blankets. Quickly, there were about a dozen nurses and doctors surrounding the bed.  My blood pressure fell drastically, my heart rate climbed dangerously, and my temperature spiked to over 105 degrees.  The medical team acted quickly, but they remained calm and reassured us that I was going to be fine.  Our friends Dr. “Jimmy” McCloskey and Mary Ellen, who work at Georgetown, both happened to be there visiting with us at the time and sprung into action with the rest of the team.  They were so helpful and added to our peace of mind.  Luke happened to stop by for a visit and was able to stay with Hanna.  It made everything much less scary to be surrounded by our friends during those horrible moments.

Later that evening, I was transferred to the ICU where they gave me medication to increase my blood pressure.  I spent Friday-Monday there and found out that my infection was “sepsis” (bacteria in the blood) and I had experienced septic shock. Shana, my mom, and Hanna’s parents came for the weekend to support us and made everything feel much more manageable. I spent another week on the "regular unit" with familiar nurses, doctors, techs, food service people, and ministers, who all seem like family at this point.  I was much more comfortable and things were less tense.  Hanna went back to work and visited me each day after school.  My blood counts recovered and I was fighting the infection like it was Apollo Creed so they sent me home on IV antibiotics for another 10 days.  After a few rough nights hanging the drugs at 3 am, we learned how to care for the infection at home and spent over 100 hours of the next week hooked up to the IV.  The antibiotics seem to make me extremely tired (not to mention recovery from the infection) so I've been sleeping and resting a lot.  I've also been enjoying Books 2 and 3 of the Hunger Games on my new Kindle as well as copious amounts of daytime television and an emotional over-investment, with little payoff, in the Phils, Sixers, and Flyers.

That pretty much brings us to yesterday when I had a bone marrow biopsy to see how effective the first round of chemo has been.  Since I can't have a transplant until the cancer is in remission, the results of this biopsy are crucial.  Dr. Broome said the marrow looked clear and promising, but we won't have the official results until later this week.  Please say a few extra prayers that the results come back as remission so we can make plans to head to the west coast in a few weeks.  We are planning to re-locate to Seattle, Washington for about 100 days to have the bone marrow transplant at the Fred Hutchinson cancer center.  They specialize in transplants for ALL and have some of the best success rates and most experience in the country....a nurse told us that the Princess of Saudi Arabia had a transplant there so it must not be too shabby.  We are very blessed to be able to consider this option and look forward to taking this next step on the journey to a cure.

I know I have said it before, but I have to mention again that everyone's thoughts, prayers, and kind words and gestures have truly inspired us to put all our effort into this fight.  Not gonna lie, this has been the scariest leg of the race so far, sometimes leaving me to wonder how I am going to get through this. But those moments are overshadowed by moments of hope, inspiration, and love brought on by the kindness and love of everyone on this journey.  With the help of our medical team, our strong faith, and the outpouring of support from family and friends (and friends of friends we don't even know), we know that we can do this.  and we WILL do this. And no matter what......


ALL Will Be Well!


"Hope is a good thing, maybe the best of things.  And no good thing ever dies."

Psyching up for Cycle II

Here is the latest: I have been at home for the last two weeks being sick in the comfort of my own home. After the first week of chemo, I was scheduled to recover for a couple weeks but they were pleased with the way that my body was holding up so they let me go home on Holy Saturday. It was so beautiful to be out of the hospital for Easter Weekend. My mom and brother came down and most of Hanna's family was able to come down and we had an amazing and blessed Easter in DC. Luke offered his place in Georgetown and we were able to eat, pray and hang out together as a family. It was wonderful to go home at the end of the day and lay down in my own bed. So, since then, I have been laying low at our apartment as my blood counts and body have been recovering. I have remained mostly symptom free and keep myself infection free and out of the hosptial. Hanna and I have tried to stay somewhat normal and made a trip to see Hunger Games and dinner with my mom, aunt and cousins. It has been so much better for my mental state to be home with my beautiful wife doing everyday things. I have lost a little weight but my appetite has stayed pretty normal so I think that is just the chemo taking its toll on my body.

The worst part was having to shave my head again. I was starting to lose my hair so we decided to preempt it and shave it before it started getting everywhere. The upside was that, at the barbershop, there happened to be a woman that overheard my story and she shared her own battle with cancer and how she knew exactly what I was going through and promised to keep me in her prayers. She gave me strength at a particularly low point. It amazes me how good people are and how, when you need it most, someone is there to pick you up. So, now I am a baldy but I keep telling myself that it is just one step closer to entering that Vin Diesel look-a-like competition.

I have been back to the hospital a couple times to have my blood checked and, as expected, I have pretty much lost all of my immunity which means no fresh fruits and vegetables (so, basically, my normal diet) and Purell everywhere I go. But, it has seemed to work since I have stayed relatively healthy the last few weeks.

I will be re-admitted on Monday to start Cycle II of the first part of this chemo regimen. It will be a little easier since I already know the routine and some of the nurses and techs but I am pretty sure the 'corner pocket' is not a guarantee. I will only be receiving chemo for 3 or 4 days so hopefully they will let me come home again to recover but they can't make any promises about that so it is just a wait and see for now.

We have received so many cards, messages, and emails. They always come at the right time and we can't thank everybody enough for your thoughtfulness and kindness. It is very meaningful give us continued strength in tough times.

Keep the prayers coming and ALL Will Be Well,

Dan

"God created shadows to better emphasize the light"
--Pope John XXIII

The First Steps Toward Healing

So I have now settled into my corner suite (they keep calling it the corner pocket) here at Georgetown. We checked in on Monday and underwent a lot of testing and preparation. I had a central line put into my upper chest so they can draw blood and give medicine easily without having to prick me. It is convenient for that, but just a pain to have something that is constantly an invasive reminder of all this nonsense. I had a bone marrow biopsy to get a baseline of the current state of the disease so that they can compare this to my marrow in a few weeks. These are never fun but, since I was actually staying in the hospital, they gave me two doses of morphine and one dose of dilaudid so I was pretty loopy and in a different universe by the time they actually did it, which I greatly appreciated......I'm sure I was the source of a few good laughs, particulary some air smooches I was sending to Hanna with a dozen other people in the room. Then they started pumping me with fluids and getting my body ready for chemo, which started on Tuesday. The first 3 days I am getting this drug that is given every twelve hours for 3 days for 2 hours at a time. So this will be thru Friday. To go with that, they have to give another drug that protects my bladder because this particular chemo is harsh on the bladder. I appreciate their looking out for my future urinary habits, but it has kept us pretty tethered to the room since it runs for 24 hours straight. The doctors, nurses, cleaners, cafeteria workers, interns, and everybody have also been amazingly nice and helpful. They also have a smile on their faces and are willing to do anything for us.

Life has brought us to this point and we have to just fight away, keep praying, keep planning our future, keep laughing, and staying strong. I will most likely be admitted here for about a month and we are of the mindset that the best way to stay positive and strong is to take it day by day, so that is our current approach. My mom and Hanna's family are going to come down this weekend and hopefully have a normal Easter dinner. My good friend Luke and his family live on campus at Georgetown and have offered their place so we will have a place to hang out and eat and I think they are going to let me go for a few hours from the hospital so that should be nice. Other than that, we have had a few visitors and are going to have many more to share the time with over the next few weeks.

I have no words to describe the outpouring of love from family and friends that has been evident over the last week. It amazes, inspires, and motivates me to think of all these amazing people praying for me, thinking about me and battling with me. It keeps us strong, keeps us smiling, and helps trememdously with this fight. I am in awe at the loving spirit of those around me. Hanna, my beautiful and amazing wife, blows me away with her support, her hugs, her smiles, her attitude, and her love. She is at my side through all of this and I can't imagine not having her. She keeps me strong and we handle all of this as a team. I love her more all the time (for example, she brought me reeces pieces and coffee today). Our families have also been walking this terrifying walk with us and we all help each other which makes it more bearable. It is a blessing to know there are many who we can lean on.

So, that is what has been happening. I am anticipating that we will fall into a bit of a routine at the hospital and with the chemo and it will become the new normal. The side effects should kick in more and more over the next couple weeks, but those are hurdles we are ready for and will handle when they happen.

Keep praying for the success of these treatments....it helps and is very reassuring. Thank you for reading this and being a part of helping us kick cancer to the curb.

God bless, much love, and

ALL Will be Well

"This is a mountain we hoped we'd never have to climb; but it's not Everest and it can be surmounted" -- Dr. Broome

In Need of Prayers

This is the post that I hoped I would never have to write. I received a phone call on Tuesday afternoon from Dr. Broome saying that my leukemia has returned and that I have relapsed. The wind was taken out of me and I could not speak nor would I know what to say. Dr. Broome was very sympathetic and tried to remain positive. Basically, the next step is to be admitted to Georgetown Hospital for up to 6 weeks to receive highly intense chemotherapy that will hopefully put my cancer back into remission. After that, I will briefly recover and then head to Hershey, PA to receive a bone marrow transplant. This is going to be a long, terrifying journey but one that we must take. I promise to continue to put 100% of body, mind, soul, and faith into this journey and I ask that everybody doing this promises to do the same with me. We can beat this and we can get through this.

I am not going to write too much now but I will write next week from Georgetown. Please pray for the success of this treatment. Please pray for Hanna, who is my strength and amazes me with every word she speaks. She is my rock and I love her forever. Please pray for our familes and friends. With all this prayer and love flowing, we will fight this fight and win this fight. I am struggling to find good words right now so I am just going to leave it at this for the moment. I plan to lean on family and friends just like I did before so thank you for being there to help. I love you all and,

ALL Will Be Well,
Danny

"Love Never Fails"