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"

My Dad

For those of you who do not already know, my dad passed away from esophageal cancer just over two months ago. I thought about writing on this blog a few times since then, but just didn’t have the strength to do so. There are no words to describe the pain, the hurt, and the absence that myself and my family have been going through. This is not how it was supposed to happen. This was not our plan. My dad is everything to me and we shared so much, including this battle of cancer. For over 30 years, he was my dad, my friend, my role model. He passed so much down to me…..love of Philly sports teams, love of Ireland, love of family, love of travel, love of country, and love of life. We shared everything and had so much in common…..down to our names. As the story goes, I was born six weeks early and in quite rapid fashion. My dad was still parking the car at the hospital the day I was born and when he got to the room where my mom was, he arrived to an early Christmas present: his second son who my parents were going to name Sean. But, in that moment, my mom looked at me and looked at him, and said that I had to be Danny, and from then on I was always Little Danny and always trying to follow the lead of Big Dan. So, it was somehow fitting that we were both diagnosed with cancer within three months of each other. For a father and son who had always shared the same loves and passions (we both cried together in awe when we finally made it out to a notre dame game and he also waited with me for hours after a Chicago Bulls game so that I could get a glimpse of the bus that Michael Jordan was on), we were going to share this fight and we were going to beat this together. In fitting with his humble character (I can say, without bias, that he is the smartest person I have ever known, even though he never graduated from college and never would admit his intelligence), he immediately focused his attention on helping me beat this Leukemia. He was almost relieved that the attention could be off him and he even often devoted some of his own blog to talking about my successes in this battle. We shared horror stories of our symptoms and our treatments, both shaved our heads, and often even went for treatments on the same day. Father and son went into this together and father and son were supposed to come out of this together. We all knew that his prognosis was much worse but we still always believed that we would win our fights together and we did not dwell on other possibilities, although I am sure he had accepted what was possible and was at peace with it. In the end, he may not have beaten cancer, but he certainly wrote the book on how to fight it. He set the example to me of how to fight this with courage, laughter, prayer, and positivity. He did everything that was ever asked of him by the doctors and then some. And, through all of the pain and terrible chemo symptoms, he lived. He and my mom went to Disney World….twice during his treatments, they traveled to Pittsburgh, Philly, DC, and wherever else family was having a gathering, Notre Dame was playing football, or there were friends to see. He danced with my wife at our wedding. He volunteered, sung carols at nursing homes, prayed, laughed, and LIVED. I am grateful that I had him to go through this with because he showed me how to do it. Even in his final hours on July 25th, he showed strength and courage. The last thing we asked him to do was to hang on and wait for my bother and sister-in-law, Joe and Sarah, to get to Hershey so say goodbye. The doctors were unsure he could wait that long, but he did…so our whole family could be together one last time on earth. And when they got there, my brother Joe was able to whisper the name of his first grandson into my dad’s ear. So, my dad was able to know his grandson (due in December) by name before he passed away and I know that we will see so much of my dad in my nephew. I cannot wait for this.

So this was not the plan. We were supposed to beat this together. He said many times that he would do anything to take this away from me so that I didn’t have to go through it….because he knew exactly how hard it was. Now we all have this void, this gap that will never be filled but we know that we must move on and must live life to the fullest….that’s what he wants. He always valued me beating cancer over him beating cancer, so that is what I am going to do. I am going to finish off this fight for us. I don’t have him to do it with anymore but I have him now to help me through it and I have him to do it for. That’s what he wants. I have my amazing wife, my mom who is a beacon of strength and love, my brother, my sister-in-law, my nephew!!!, my amazing friend, and my wife’s family. I would be nowhere without all of them. We have shared this grief as a family and we will continue to live life as a family, just like my dad would want. Hanna and I talk almost everyday about my dad and the things that remind us of him. I can’t turn on the TV, walk down the street, or watch the news without my mind being turned toward my dad one way or the other. But the thing that brings me closet to him is when I go to the hospital to get chemo or to hear news about my treatment. I know my dad was smiling when I got news a couple weeks ago that my latest bone marrow biopsy was negative. There was no sign at all of the return of any cancer. My latest spinal tap also confirmed those results. I am right on track to put this treatment behind me with one more year of chemo and treatments. There are still many unfortunate and painful side effects to the chemo which I live with everyday but that is okay. I am often afraid of what might happen but I won't let that fear take over. I will do everything asked and everything it takes to beat this and to LIVE while doing so….cause that’s what my dad did. For those of you who knew my dad as Meatball, Dan, Danny, Big Dan, Uncle Dan, brother, Mr. Lyons, you know a little bit about what I am talking about. You know this man was inspiring in such a humble way. I was blown away by your presence, your love, and your support at his funeral and afterward. Thank you so much. For those of you who never got to know him, I wish you could have, but I hope you can know a little bit of him through knowing me and my family. I will try to live my life with the simple joy and gratitude that he showed every day, right to the end. I will raise my children the way my parents raised my brother and I and my dad will be present through it all.

I will beat this cancer….for me, for my family, but especially for my dad, cause this was our fight together and we are still going to beat this together. I can’t do it without him and, even though he is not physically here, I know I am still doing this with him. I love you and I miss you everyday, Dad, and I hope to make you proud.

ALL will be well

Little Danny

“Courage is being scared to death and saddling up anyway” --John Wayne


Here we are at the World Series.....here's to the Phils getting back there this year!

Two Years In

Well, it is truly amazing that June 8th has rolled around once again. It was two years ago this morning that I recieved a phone call that changed my life forever. I will never forget that panic and fear. Luckily, I was instantly surrounded by God, friends, family, and amazing doctors and nurses. I have been taken care of and loved every day since. I am so blessed to continue to be in remission and doing well. I am still taking daily oral chemo, monthly IV chemo, and spianl taps every three months (just finished having them every month!!). These all have their side effects that I manage daily, but they are well worth it when I look back at where I came from. Since last year, things have quieted down a whole lot. I have finished my first year in the phd program at George Washington, celebrated a year of wedded bliss, traveled to New Orleans and Alabama, and just basically started gaining my strength (and hair!) back. I feel stronger and more my pre-cancer self everyday. We are so lucky to get to spend time with our nephew and are so excited to welcome two new nieces/nephews this year. This day is also very special because my goddaughter turns one which is a way better thing to celebrate than any of this cancer nonsense. Hanna and I are finally planning the honeymoon that we didn't get to go on to Costa Rica so I am super excited to hang with some toucans, three toed sloths, and my beautiful bride for a week this summer. I am so lucky to spend every day with Hanna and we never lose sight of how fortunate we are. She challenges me, inspires me, and makes me laugh on a daily basis. She walked every step of these two years with me and fixed many a bad day with that perfect smile.

Mainly I just wanted to report that things are still on schedule, there have been no setbacks, and I am still pounding this cancer out of me. Writing on this blog really helped me through the first year and I am so thankful for those of you who read this, journeyed with me, loved me, supported me, and carried me. Also, I ask for continued prayers for all those fighting against cancer and sickness. My dad is still in the midst of his battle and showing his strength every day. He has endured many rounds of chemo and radiation and has shown me what it means to be brave and courageous, while my mom continues to define selflessness and hold his hand (and everyone elses) every step of the way. I love them both so much. Aunt Nora is also showing cancer that it is not welcome in our family. She is such a strong woman and I learn so much from her grace as she fights with everything she has.

Cancer is a nasty, indiscriminate beast and invades when least ideal or expected. It does not care who you are, what you believe, or what your plans are. I am lucky enough to have been able to get rid of it but many are not as lucky and there is no rhyme or reason to that. I feel lucky but I feel sick for those I have met along this way that are not as lucky. The doctors, nurses, and medicines are getting better and I am just ready for this world to be done with cancer. I am hopeful that we get to see that happen in our lifetimes.

Wasn't sure what I was going to write today but I just wanted to continue to say thank you to all those who have helped me in the last two years. This is not a fight I thought I would be in at 30 years old but we are in it, we will keep fighting, and we will win. thank you for everything and

ALL will be well

"Feed your faith and your fears will starve to death"