Journal

Journal entry by Krissie Pannullo

Hello, friends and family!

It has been a challenging four months since Dan left our lives and the support of everyone has meant so much to me as I navigate this new life I've been handed by the universe.  I wanted to share an important and dear to me piece of information about something I am working towards to help continue the fight against this devastating cancer.  I've been accepted by Project Purple to be a part of their fall hike at the Grand Canyon in October. Project Purple is an amazing organization that provides patient financial aid for families battling pancreatic and research support to continue working towards the discovery of better treatment options for patients.  As part of the hiking team, I am fundraising to support Project Purple and I am asking all of you to help me get to my goal.  Share, post, spread the word.  Any little bit helps!  I am dedicating my hike to Dan, to his memory, to the impact he had on all of us.

My Fundraising Page:  https://www.crowdrise.com/o/en/campaign/i-conquer-the-canyon-fall/kristenpannullo 

I hope life is kind to you all right now and please feel free to reach out for any questions, or just to say hi.  :)

All my best,
Krissie
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Journal entry by Krissie Pannullo

Friends and family are invited to a memorial celebration of Dan on February 2, 2019 at 1PM at Angelone's Funeral Home in Willow Grove, PA.  The details and directions can be found here:  http://www.angelonefuneralhome.com/obituary/daniel-pannullo-jr

Dan's last wishes were to not have a traditional funeral, but to celebrate life.  Attire is casual.  If there is a favorite item that reminds you of Dan, be it a soccer jersey, Eagles gear, anything, please feel free to wear it.  Towards the end there will be time for the sharing of cherished stories, happy memories, and fond moments of Dan.

Journal entry by Krissie Pannullo

This is the journal update I never wanted and had hoped I wouldn't have to make, not for a good, long while.  It is with a broken heart that I have to say Dan passed away yesterday evening after a hard, brave battle with pancreatic cancer.  He went peacefully as we had been keeping him as comfortable as possible in the days since he transitioned to hospice care.  He no longer has to endure the stress and wear cancer heaped on him, though he never truly let on how much it must have been for him to face.

Dan is the love of my life and always will be.  It still doesn't feel real that he is gone, and I won't see his smile shining back at me as I tell him I love him.  He was my favorite, I told him this as much as possible.  The best of the best.  I knew Dan was easy to love, and the scope of how much he was loved and how many people loved him became evident in the wake of his diagnosis and months after.  He gave so much when he didn't have to, he had great passion for so many aspects of his life.  Dan was a one of a kind man, and it devastates me that he could not have another 39 years here with us.  He touched so many people and I am sad for all of us to have to go through life now with him no longer physically present, though he will always be with us in our hearts and our memories.

I love you forever Daniel James Pannullo.  We all love you.  Forever.

Journal entry by Krissie Pannullo

Checking in to give a brief update on how Dan has been doing.  He got through his first cycle on the gem-abraxane regimen which constitutes chemo once a week for 3 weeks, then off the 4th week.  He is still adjusting to the new regimen and is not 100% back to the strength he had in October, but he is making progress gaining weight back and eating more.  He did feel well enough to head out to a concert Tuesday which we got to enjoy in the handicapped section thanks to the venue accommodating us (it also helped keep him away from the general crowd for immunity purposes).  He's been feeling a bit run down since Tuesday, but hopefully resting through the weekend will help.  We're back next Tuesday afternoon to start his second chemo cycle with treatments also on the 26th and 2nd.  After that I believe we'll be getting a CT scan to see how he is responding to the chemo internally.  Hoping for some good news there.  We want to wish everyone a happy holiday season and a happy new year.  We hope that 2019 can bring some more positive outcomes and better health for Dan!

Much love,
Krissie

Journal entry by Krissie Pannullo

I got word that Dan had met the requirements for the clinical trial we were considering, but unfortunately the randomization selected him for the chemo-only regimen.  This was the next course of chemo he would be doing if he hadn't enrolled in a trial, so we'll be going locally for his treatment again.  This is just the unlucky side of clinical studies and their critical need for data integrity and ethical placement of patients in the different regimens.  There are other trials on the horizon if and when Dan needs them.  I'm routinely researching options and working in pharma means I have knowledgeable colleagues who share anything they come across that might help us.  I've established some excellent contacts at UPenn as well as local and national support with PanCAN should I need to expedite anything for Dan.  The kitchen sinks are ready to be thrown when the time comes.

We are hoping he can restart chemo early next week and are just waiting for the scheduler to call.  I do ask if anyone wants to offer support right now, please leave it in the comments here or send it through me as Dan's been feeling a bit rough with this wait for treatment.  We both appreciate when people reach out, but I want him to rest as much as possible until he feels better.  Please just shoot me an email or text, or message me through here and I will pass it along to Dan.

At this time I don't have much else to report.  We're hanging in there and I'm in touch with his care team almost daily to make sure we manage his symptoms as best we can.  It was unfortunate that his initial chemo regimen did not last as long as everyone had hoped, but we're going to try to stay positive and perhaps a better option is out there waiting for him.

Journal entry by Krissie Pannullo

Just wanted to give a shoutout to everyone who signed up for and/or donated to our team for the PurpleStride 5K.  Dan's PT Army surpassed the goal of raising $5000!  Online registration has ended, but people can still sign up at either of the packet pickups (Thursday at Road Runner Sports KOP, Friday at the race location) or at the event on Saturday.  The money raised goes beyond spreading awareness and helps fund the research that may one day knock pancreatic cancer way down the rankings of deadliest cancers.  November is Pancreatic Cancer Awareness month and the work does not end with the final steps of the 5K.  We can keep supporting and fighting this all month, and year, long.  I cannot recommend sites like PanCAN enough for further info on how you can help.

Back to the 5K.  Many have been asking if Dan will be making it out for the event and all I can say right now is "maybe."  It's going to depend on a lot of factors:  how he feels the night before, the morning of, the weather, things like that.  He is hoping to be there, but it's going to be a last minute call. 

Keep your fingers and toes crossed the rain stays put on Friday and it should be a great event!

Journal entry by Krissie Pannullo

Dan has been through six cycles of the FOLFIRINOX chemo regimen and last week had his second CT scan since starting treatment.  We met with his oncology team at Einstein the other day and went over the results of the scan.  Dan continued to show dramatic improvement in his lymph nodes, but it appeared a few spots on his liver increased in size.  This was a bit of blow, as it means the regimen is no longer fully effective for treating his disease.  Fortunately, this was detected while the areas in question are still very small, and Dan is still feeling great overall.  His immunity is intact and he is still pain free.  A testament to how much better he has been feeling is his ability to get out and about when he had his breaks from chemo.  Last weekend we had the pleasure of visiting Ott's Exotic Plants to see their mum mountain (I highly recommend!!) and then a trip over to Merrymead Farm to get some ice cream and pumpkins for our front porch.  Dan has also been dabbling in getting back into playing guitar after a many year break.

We met with the pancreatic/GI cancer team at UPenn today to see if Dan could be screened for any clinical trials.  There is another combo of chemotherapy that has been shown to be effective against pancreatic cancers which we discussed.  There is a trial they have initiated screening for as well.  It as an immunotherapy combo that is being investigated with and without chemotherapy.  We are still researching the intricacies of the trial, and Dan is mulling over everything before deciding what his next course of action will be.  We decided to go ahead with the screening as there is always the option to cancel if he feels it's just not the path he wants to pursue.  The team also informed us that there are third pass options following the new chemo regimen he can try down the road if needed.  I am grateful that even with some setbacks, there are so many more options for pancreatic cancer patients than there used to be.

On that note, we are a week and a half away from the PurpleStride 5K Run/Walk.  Fundraising efforts for groups like PanCan, or Project Purple, help fuel these clinical research trials and give support and access to pancreatic cancer patients and their caregivers.  If you've been fence-sitting about signing up, there is still plenty of time!  If you cannot participate in the walk itself, please consider donating to the cause of one day finding a cure for pancreatic cancer.  Link to Dan's PT Army here:  http://support.pancan.org/site/TR?fr_id=1502&pg=team&team_id=14597

Wishing everyone the best and a Happy Halloween ahead!  

xoxo,
Krissie

Journal entry by Krissie Pannullo

Hello, friends & fam!  Things have been a bit quiet around these parts which is quite welcomed.  Dan's been through 5 rounds of chemo and the more recent rounds have been a bit easier on him.  This is great for his recovery weeks as he can get up and move around a lot more, and feel more like his old self.  We go back for round 6 on Oct 2, then will possibly have another CT scan to see how things are progressing.  His oncology team is working to find a good balance between hammering his disease and maintaining a good quality of life for Dan.  Something I personally feel is very important to help him get through these treatments.  Keep those fingers and toes crossed the good momentum keeps rolling!

I wanted to touch base on two things.  First, the PurpleStride 5K is less than two months away!  There is still plenty of time to sign up with the team, and get out there to train!  Right now we are ranked 11th out of 148 fundraising teams.  Please consider making a small donation if you are unable to attend the event.  Let's see if we can have Dan's team break the top 10!  We will be looking to make team t-shirts and start stocking up on all things purple in the coming month and a half!  I've got my hair already colored and ready to go.  ;)

On a more serious note, one thing I wanted to mention/stress is the fact that flu season is approaching.  With Dan going through a very aggressive chemo regimen, there will be times his immune system will be heavily compromised.  At the strong recommendation of his oncology team, I am passing along the request that any visitors we may have over the next few months make sure to employ illness prevention tactics (regular hand washing, avoidance if there is any chance of exposure, etc.) and consider getting a flu shot.  His NP stressed that frequent visitors MUST get one as soon as they are able to.  I myself will be getting one ASAP.  A friend linked me to this helpful piece that explains why flu shots as adults, and immunizations in general, are critical to protecting both young kids and adults who cannot protect themselves.  This is nothing personal, we are doing this to ensure Dan stays healthy through what could be a very problematic time ahead.

I hope everyone is doing well and again, thank you from the bottom of our hearts for all your support.  <3

xoxo,
Krissie

Journal entry by Krissie Pannullo

Dan had a CT scan yesterday afternoon that we have been eager to get done.  This is the first scan he has had since starting treatment, so it held a lot of weight for us and his doctors.  I am happy to share that the nurse practitioner of his oncology team called to say the scan showed dramatic improvement throughout!  In short, the chemo is working tremendously well!  We'll get a more in depth look with his doctor at his visit next Thursday, but this was the news we were hoping for.  Dan has been feeling great and is still pain-free.  His NP is also planning for him to start physical therapy to work towards being more active throughout the day.  She said her long-term goal is to get him healthy enough to run the Broad Street 10-Miler again.  If things continue on this path, I have a good feeling her goal may be accomplished. 

On the topic of running, I wanted to share that the Purple Stride 5K Run/Walk in Philly to benefit the Pancreatic Cancer Action Network is on November 3 this year.  Dan's awesome colleagues at E&A have set up a team for Dan.  The team link is here.  You can register, or donate if you are unable to run.  We hope to put together a huge team in support of Dan, so spread the word and dust off your running shoes!  :)  If anyone has questions please feel free to reach out!

Thank you to all for supporting us.  Your messages, texts, calls, comments, thoughts, good vibes, etc are working.  I am sure I sound like a broken record, but we truly appreciate the love everyone has shown us in this time.  Let's keep it up!

xoxo,
Krissie

Journal entry by Krissie Pannullo

After getting second and third opinions, we are finally set to begin Dan's treatment for pancreatic cancer.  The regimen, FOLFIRINOX, is a very aggressive chemo that is better tolerated in younger patients.  Our hope is that Dan's age and fitness only make him stronger in navigating the upcoming weeks of his treatment.  He will be fitted with a port on Tuesday, July 10, then begin his infusions on Wednesday, July 11.  All thoughts of strength and hope are with Dan in his first week.
Dan’s Story

Site created on July 2, 2018

On June 29, 2018, Dan received the diagnosis that he had stage IV pancreatic cancer.  An active member in both the national, Eastern PA local, and collegiate soccer communities through refereeing and playing, we supported Dan as his did everything he could to give his cancer the red card and send it off for good.  Dan fought bravely through every moment, often not letting on how tough the cancer was for him.  Dan passed away on January 22, 2019 in the company of his wife and parents in the comfort of his home.  A lover of the beautiful game, an avid runner of road races like the Broad Street Run, a son, husband, friend, colleague, and family member, Dan touched the lives of so many people.  Please join us in showing our love for Dan as we honor his incredible legacy.

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