Hope Floats

Guest Post from Mike and Meg Greto:

I have often wondered where this idea comes from, haven't you?  The idea that
hope floats?  As if like a balloon it brings us up out of the place
where we are, gives us a new perspective, and guides us... up?  Where?
To some place where we gain a better vantage point, a different
perspective? Is it it's own place?  Where the perspective is perfect?

Every now and then, I come to this little blog space and hope for an
update.  I'm not sure what I expect to see or read (am I the only one in
this silliness?)... Just a little note.  Maybe from Patrick? Crazy,
right?  Maybe from others around the world who were and are touched by
this special space and chronicle of a life that, well, had hope.
Patrick knew this hope!  He shared this hope!  And, really it's one of
the reasons why this blog is such a place for people to come and find
comfort and peace, which I believe lead to HOPE.  It changes our
perspective.

This week last year, there was hope.  Hope that Patrick would recover,
hope that, although his cancer had returned, he could fight it and
live a little while longer with his sweet wife and daughter.  And, if
you are reading these posts from last year and remembering, with
tears, all the times that are to come, you may wonder where the hope
is?  But, you see, as you read, the hope is still there.  It's still
hanging in that hospital room.  It's floating like a balloon that's
lost it's string in the corner by the air conditioner return, just
waiting for someone to look beyond.  Look up.

Patrick was so good at that!  He loved life and loved living it to the
fullest.  He KNEW this hope and it guided and directed everything he
did.  That's why this little blog is such a draw to people. And, it's
why Patrick's aunt, Sarah Young, has dedicated a book about hope to
him.  It's called Jesus Today, and its about hope. On this earth, PK
was a beacon to this hope. And this Advent season he gets to
experience the celebration, from a heavenly perspective, that we down
here only see in shadows.

http://www.amazon.com/Jesus-Today-Experience-Through-Presence/dp/1400320097/ref=sr_1_1?ie=UTF8&qid=1355232421&sr=8-1&keywords=jesus+today

If you've been thinking about Patrick this holiday season, please
check out the book. The dedication is lovingly written and a percentage of 
the sales go to Patrick's sweet wife and daughter, Julie
and Cecilia.

Our prayer is that this season will bring you hope, like you've never
been introduced to before!

Blessings, in the hope of Advent,
M&M

Ephesians 1:18 "that you may know the hope to which he has called you..."

Remembering

Hello, there. It seems so strange to write on this blog again. I've thought about posting something many times since I last wrote, but could never really imagine what I'd write. It feels odd to post something under the "get well pk" banner, because we all know full well he never got well. Well, he never got well this side of heaven. I trust that he is enjoying himself up there; happy, healthy, and in the beautiful final form God had always intended for him.  (It doesn't mean that I don't selfishly wish he was down here with me, in this broken, violent, sick world.)  Alas, it shall not be so.

Cecilia and I are doing as well as can be. We're adjusting back to life in Durham, NC, and so thankful for the community that we already had here, which helped catch us and hold us up as we landed back "home".  She's three now, and fully embracing her little life, imaginative play and all of her new friends. We talk about Patrick a lot, and she seems to remember him and the fun things they would do together: "when I was a baby, daddy used to throw me in the air and catch me!"..."I am a fast runner (which she is) like my daddy (which he was)"..."daddy taught me to ride my bike, now I ride it fast like a big girl!" Her daddy is her personal superhero.  It breaks my heart that he's already missed so many fun stages of her life already, and I hate the fact that he won't be at the big moments to come. I am trying to have hope that God will sustain us, and comfort us, even in those difficult memories and intense absences.

It's so hard to think about where we were at this point last year - in the ICU, learning the devastating news that Patrick would never get better - I remember how hard Christmas was, how much I wanted to cling to my husband's dying body and make him all better. I also remember the hundreds of friends, families and seemingly strangers who entered that room, who brought us joy, love and comfort. I can never thank you enough for your kindness, for your Christmas gifts, for your beautiful angels that dangle on our tree again this year, for your prayers, cards, gift cards, donations, offers of help, yummy food... You came alongside of us in the darkest of times, and we are so thankful for you.

I wanted to write today, because I have a special guest post to include from our friends Mike and Meg Greto. They were so kind and eager to post this, so I wanted to be sure to get it up here before it got lost in the mess of Christmas.

Blessings on each of you this Christmas - may you know the comforting, redeeming love of the Christ babe in a new way.

Julie and Cecilia

One Month Down...Many More To Go...

It's been just over a month since Patrick passed away, and yet it seems like an eternity since I last heard his voice, saw his lively blue eyes flicker, or watched him play so skillfully with his sweet C. It feels so weird to be both a widow and a suddenly-single mom at 33, and yet it feels even stranger that he's gone...for good.

People often ask how I'm doing, and it's hard to know how to respond; it's hard to know how I feel. I guess I'm doing "okay" most of the time. Sure, Patrick's absence hurts like crazy. Sure, I cry at points everyday. Sure, I still expect to see him when I turn the corner, or when I roll over in bed. But, I still get up every morning, drink my coffee, and make sure Cecilia's fed...and on some days, those are three things for which I'm very proud of accomplishing. On other days, I get the sense that the age old mantra of "everything being okay" is true. I don't know what that "okay" is going to look like exactly, but I trust that God will somehow, and in someway, create a new life for us that is still richly steeped in his merciful grace; a new life that is life-giving to us, even in ways we now cannot even imagine.

I have spent the last month trudging through the endless piles of paperwork needed to be filed upon the death of a loved one. I had NO idea how challenging it could be to settle one's estate. Even though I tend towards all manner of organization, I have struggled to keep up with all of the various accounts, agencies and people that need to be notified of Patrick's death, and all the of the subsequent paperwork that needs to be signed, notarized, sent, faxed, faxed back, re-sent, re-signed, re-notarized, etc.  I feel like I could write an instructional book on how to close up one's estate. (I'm sure there's already one out there...perhaps I should have read it.) All of the paperwork has kept me going, and perhaps it has staid off waves of grief that will likely come in surges in upcoming days (and years.)

I couldn't be more thankful that Patrick ended his career with Accenture. Their benefits (in life and death!) have been amazing. Even in his absence, Patrick continues to provide for his family. As his survivors, we are granted lifetime health benefits at the same rate we were paying when he was employed. We're given 2 years of free legal help and 6 months of free financial advice. His life insurance policy is generous, and the monthly social security payments will allow me time to sort through this next season of life, write my book, and get Cecilia into some sort of preschool program before I have to think about going back to work.

As of now, I'm planning on moving us back to Durham, NC, probably later this summer. We still own our townhouse there, which we bought when we got married, and lived in when Cecilia was born. We probably had our happiest (and his healthiest) years there, and it thus seems fitting, and feels like a good thing to return to our community and life in Durham. It also seems like a more realistic place--given the cost of living and pace of life--to live (and thrive) as a single-mom. We have a great church and a wide community of friends there, so I would be returning to a strong support system.

Cecilia is blossoming before my eyes--reminding me more and more of Patrick each day. She loves pickles, and his soccer ball. She loves to "run fast", and is super ticklish like her daddy. She's moved into the "why" stage (I'm hoping this means the "no!" stage is soon over), and is constantly asking me questions. She asks about her daddy periodically - "when will he come home? is he still at the ho-pi-tal?" It breaks my heart to have to remind her that he's not coming home. My standard answer right now is that her daddy was so sick that only Jesus could heal him, so he's in heaven with Jesus; he's not sick anymore, and his hair has even returned! After she asks "why?", and I stumble around for a better answer, she has usually moved onto her beloved trains or dolls. I'm sure I'll be answering her questions about him for the rest of my life, and I know they will get harder and harder, especially as she begins to forget his presence in her life. It breaks my heart that he won't be here as she grows up, that she won't remember how funny he could be, or how much he loved her. I'm thankful that so many of you did know him, and have committed to sharing your love and memories of him with her (and me).

I have slowly begun writing thank you notes, and honestly, it seems like a more daunting task than all of the crazy estate stuff. We have experienced an absolutely astounding amount of support from so many hundreds of people over the last few months. Hundreds of meals, bags of groceries, kind notes and monetary gifts appeared on our doorstep, or in the mail. I have to admit that at some point, when things were growing really intense, I lost track of all of their donors.  So, please forgive me if you never get a thank you note. Know that I am SO thankful for you -- for your love, generosity, kindness, and prayers for us. We could not have survived this horrible journey without you.

I don't really know what to do with this blog now. It seems weird to keep it going under the headline of "Get Well Patrick Kelly". Perhaps I'll start something new, to mark this new phase of life, but perhaps not. I just wanted to send a somewhat final (?) update for any of you who have continued to check-in with us.

So for the nearly 215,000 hits that we've received on this blog, since we began blogging about Patrick's cancer journey back in late August, thank you for being a part of this story. Thank you for your encouraging comments and messages of concern. Thank you for your faithful prayers and your interest in this terrible season of our life. I'm so sad this story had to ever begin...but I'm thankful that you were an integral part of it, even to the very end.

Blessings to all of you, wherever you are, this evening,
Julie
(for Cecilia & Patrick)

Memorial Service Video

Hundreds of our friends, families, clergy and (once) strangers gathered on Friday to honor Patrick's life. It was a beautiful service. Thank you to all who came, and to all of you who helped make it possible! I'll attach the video of the service, once I get a copy of it. But, for now, enjoy a 10 minute "slide"show we put together for the service, which played during the prelude. Thanks to my new brother-in-law Heath for putting it together!

http://vimeo.com/36080104

(Password: PK)

Patrick's Obituary

My sweet Patrick’s obituary appeared in the Washington Post this morning.  I will miss him dearly.  Any and all are invited to his Memorial Service, which will be held on Friday, February 3 at 11 a.m. at The Falls Church.  Details on the service are on my previous post.

Here is the obituary from the Washington Post

PATRICK ALEXANDER KELLY (Age 34) 

November 29, 1977 – January 28, 2012 

On Saturday, January 28, 2012, beloved husband of Julie Cate Kelly and devoted father of Cecilia Kelly, cherished son of Timothy and Claire-Lise Kelly, and loving brother of JoAnn Kelly Ward and Christine Maurer. Patrick passed away at the National Institutes of Health after a 7-year battle with lymphoma brain cancer. He is deeply mourned by his family and friends, even as they rejoice in the certainty that he is now fully healed.

Patrick was an accomplished consultant and highly respected by his colleagues and clients. After graduating from James Madison University, he worked at Touchstone Consulting Group for seven years. He further developed his career at Booz Allen Hamilton and Accenture.

A kind and adventurous spirit who lived life large, Patrick was a valued and integral member of communities wherever he lived - including Brentwood, TN, Richmond, VA, Durham and Charlotte, NC and the Northern Virginia area. He was dedicated especially to his church fellowship, most recently at Restoration Anglican Church in Arlington.

A memorial service will be held 11 a.m. Friday at The Falls Church. In lieu of flowers, the family asks that donations be made to the Wilson Cancer Research Fund or the Ceci Memorial Fund. For more information, For more information, please visit http://getwellpk.blogspot.com/ and look on the “Memorial Funds” tab.

Here is the link to the actual article: Washington Post Article

Details on Patrick's Memorial Service

I've just received confirmation that Patrick's memorial service will be held this Friday, February 3rd at 11:00am at The Falls Church, 115 E. Fairfax Street, Falls Church, VA 22046. (Phone 703/532-7600.)

For directions, please see: http://www.thefallschurch.org/pages/page.asp?page_id=31319.
For parking, please reference: http://www.thefallschurch.org/pages/page.asp?page_id=63259.

There will be some sort of reception following the service in the fellowship hall. If there are other details to send along, I will, but I think this should suffice for now.

It's a sweet honor to have our service in the Main Sanctuary of The Falls Church, where Patrick and I first met in 2005, when I was working on staff with Kairos, their (then) young adults ministry. I fondly remember him helping me set-up for the service and collect lingering worship pamphlets after our Sunday evening worship times. I suppose it's a "coming home" of sorts, on multiple levels.

Please join us if you can!

**Please note that there will not be a nursery available, but given that Patrick LOVED little ones, I know he'd want you to feel free to bring them into the service. There are various lobbies outside of the Main Sanctuary, where the service will be held, that telecast the service on TV screens for your viewing pleasure, should you need to step out for any reason.

**Please also note that this service will likely last about 90 minutes with a reception following, so those of you taking an extended lunch break to join us, please know you won't be heading back to the office (or to your home) on an empty stomach!

Rest In Peace, My Sweet Patrick

After months of chemo, countless drugs, uncontrollable seizures, a medically-induced coma, long, fitful ICU nights, uncomfortable catheters, a gradual loss of all neurological function, feeding tubes, IVs and around-the-clock morphine, Patrick drew his last breath this morning around 4:10am. Early signs of his imminent death had begun to show, and we were told yesterday that it shouldn't be more than 24 hours before he passed from this life into the next. We gathered some of Patrick's dearest friends and our families to his bedside last night, and together shared stories and memories of our relatively short time with one lovely Patrick Alexander Kelly. We passed around pizza and sipped wine in Styrofoam cups, and each said our goodbyes to this dear man. We shared in a simple Anglican liturgy of last rites, and cried many tears over him.

Christine (PK's sister) and I had been sleeping in his hospital room overnight for the past 9 days, and were joined last night by his father, who slept in a recliner next to PK's bedside. It was evident throughout the evening that Patrick's breathing was growing more and more shallow, and his coloring was growing more and more pale. Around 4am, his night nurse came in to give him an extra dose of morphine, to help with any discomfort he might be having, and to help manage his breathing. I could hear her pressing the buttons on his morphine drip machine, and dosed back to sleep, figuring Patrick would rest comfortably for a few more hours. Soon after, Tim noticed his breathing begin to falter and checked to see how he was doing. While Christine and I (the recognized "hardy" sleepers of the family) dozed off in our rickety cots, Tim realized that his only son had just passed away. He awoke me, saying "Julie, I think he just passed..." (not the sweetest words to one's ear!) and I could feel that his face was now cold, his lips were purple, and listened with my new wannabe-a-doctor stethoscope for his absent heart beat.

The love of my life passed on from this life and into the loving, healing arms of God at 4:10am on 1/28/12, just five months after he had been diagnosed with a re-occurrence of brain cancer, just two months after he turned 34, just a week short of our 4 1/2 year anniversary. It's both the saddest day of my life, and a strangely joyful one, as I know he is now finally in no pain. He no longer needs heavy meds to sleep, scans to determine his brain function, catheters to help him pee, or mouth swabs to help him feel hydrated. I like to imagine that he's already regained the fifty pounds he had lost over the past few weeks (and anyone who remembers Patrick's lean frame knows there wasn't 50 pounds to lose!).  He looked more like an Auschwitz survivor this morning than the strapping young man with whom I fell in love. I like to imagine that he can again run with strength, dance with ease, and kick his beloved soccer ball around with great agility.  I like to imagine he's eating really tasty non-pureed food for the first time since December 1st. I like to imagine that he's meeting my Grandpa Seume, and my Grandma and Grandpa Cate. I like to imagine that he's playing tenderly with our unborn child, and those of our friends who have recently miscarried.

I especially like to imagine that he's cheerfully gone through some sort of Heavenly Orientation Day today, along with the fellow new members of Heaven's Class of 1/28/2012. I can see him raising his hand to request a Medium-sized orientation tee-shirt, and a slim-fitting one at that. I'm sure he asked that multiple photos would be taken for his ID badge, so that he could have his best headshot displayed for his new friends to see.

I'm going to miss that sweet man, as I know many of you will as well. Thank you for following along with me. Thank you for your words of comfort, support and empathy. My goal is to somehow turn this sorrowful story into a real book someday soon, so that Patrick's legacy can live on, (and selfishly so that I can process the pain and memories in a healthy, productive way.) I'll keep you updated as that comes together! :)

For now, I'm trying to catch up on lost sleep, and I look forward to spending focused time on Cecilia once again. We're working out arrangements for his memorial service.  As of now, I believe it will be held on Friday, February 3rd at The Falls Church in Falls Church, VA (just outside of DC). Any and all are welcome! I'll send out more details when I have confirmed date/time/details, etc.

Thanks for your ongoing love and faithfulness to us, and to him, during this hard season. Your love and friendship has been SUCH a blessing to me.

With a mixture of love, sorrow and eternal joy,
Julie - the newest widow on the block. :(

A gift for Cecilia

A guest post from friends Steve and Nancy Skancke:

We are saddened to hear the news from Julie that the earthly life of our Christian brother Patrick is nearing an end, but know that God and Jesus are welcoming him to Heaven with a new, disease-free, body.  And we know that Team Patrick will continue to pray and care for Julie and Ceci even after Patrick leaves us in this world.

Many have asked how they might help Julie and Ceci financially.  As a result, an account has been set up at Fidelity for the health and well-being of Ceci (including her living and education expenses).  Julie’s name is on the account with Ceci as the beneficiary. You can contribute directly to that Fidelity account; the instructions are outlined below.  In addition, Patrick and Julie set up a college education account for Ceci and you can designate your gift for that account if you so choose.    

Checks for the Fidelity Account should be made out to, and can be sent to:

“Fidelity Investments, FBO:  Julie Cate Kelly”

In the memo line, please reference Account No. X65520322. 

Mail checks to:

Fidelity Investments

P. O. Box  770001

Cincinnati, Ohio  45277-0003. 

To wire transfer funds to the Fidelity account, have your bank send the wire to:

J. P. Morgan Chase, NY

Routing No. 021000021

Credit to National Financial Services LLC (no. 066196–221)

For the benefit of account:  Julie Cate Kelly

For final credit to account no.  X65520322

[you can also see the wire instructions here  -- be sure to use the brokerage account wire transfer information from this web page].

If you have questions about deposits to the Fidelity account, you can call Fidelity at 1-800-544-6666, dial “0” at the prompt, and reference the account number. 

If it is easier, you are also welcome to write a check to the Fidelity account (written to Fidelity Investments, FBO:  Julie Cate Kelly, with reference to Account No. X65520322, as noted above) and send the check (along with your email address and/or phone number) to:  Steve and Nancy Skancke, 833 Nethercliffe Hall Road, Great Falls, Virginia  22066.  We will confirm receipt to you and will ensure that the check is immediately deposited.

If you wish to contribute to the Ceci College Fund, please send to us a check made out to “Julie Cate Kelly” with “Ceci Education Account” indicated in the Memo section of the check. (Mail to the Skanckes' address above.)  We will make the deposit and confirm receipt back to you.  

Please don’t hesitate to call (703-759-4927) or email us if you have any questions.

Thank you for your continuing support and prayers for Patrick, Julie and Ceci, and for Patrick’s family.  We know that it means a lot to them. 

God Bless you and them, 

Steve and Nancy Skancke 

The End is Near

It's been awhile since I've posted any update on Patrick, but it was hard to know what to say. Patrick had plateaued, continuing to demonstrate brief moments of wakefulness, maintaining fairly calm sleep patterns, which were induced with and managed by a variety of sedatives and muscle relaxants. In general, he appears to be in little pain, although the only signs of discomfort we have to watch for include some muscle tightness/rigidity and seemingly spontaneous full-body perspiration. We continue to keep vigil beside him, rearranging his pillows and re-positioning him in the same bed he's laid in since Dec 1st (!). We massage his now-teeny muscles, clean out his ears, nose and mouth, and do anything we can to keep him (at least appearing) comfortable.

But the time came--the day I desperately dreaded--when we had to ask his medical team to take out his feeding tube. He is no longer processing his liquid "food" well: he's begun producing excess mucus, urinating less, sounding more congested, and overall shutting down on us -- on life. With much deliberation, counsel and prayer, we became very aware that we had reached a critical point where if the feeding continued, it could become more detrimental to him than helpful. He could aspirate the food and excess mucus into his lungs, which would then likely lead to pneumonia...a bothersome way to die. He's also begun to develop bedsores from sitting fairly upright -- a position necessary with tube feeding. So, as of yesterday afternoon, he's no longer receiving any nutrients. For now, he'll continue to receive his meds through the tube that leads into his nose, as he doesn't seem too bothered by the thin tube leading to his stomach. His picc line fell out last week, and when the nurses attempted to install an IV in it's place, his body rejected the needles: apparently noted signs that his body is ready to enter it's final rest. So, unless we want to stick meds up his, uh, rear-end, the nose is a pretty good way to manage his pain. He's able to lay on his back now, which he seems to really enjoy.

It's so hard not to feel like we're "giving up" on him, and yet I firmly trust that God is not giving up on him (or us). We're simply letting Patrick go, following his body's organic cues, allowing him to tell us when he's ready to pass from this life to the next. At this point, we just continue to watch and wait. We've been told that his 34 year old body will eventually shut down (somehow), and that it will likely happen in the next two weeks. My prayer now is that he'll pass peacefully, that he won't feel any pain in the process, and that he'll sense our love for him in his last days with us.

Cecilia is back from Boston, and it's so wonderful to have her home with me, if for nothing else to remind me that there is much life left to live. And yet, I'm realizing what my life will look like as a single parent, being the only one there to respond to her cries at night, or her tantrums in the late afternoon. It's completely overwhelming to think about having to make all of the parenting decisions by myself. I hope and pray that God will grant me the strength, wisdom, and courage to meet each day with some sense of renewed grace (and energy!).

Thank you for your continual prayers, support and notes of encouragement (yes, I do read them!). Someday I will get around to thanking you for all of your help, gifts and love....but for now here's a big THANK YOU to each of you. I know full well that I couldn't be getting through this "valley of the shadow of death" without you.

Blessings to all of you this day.
Julie

Quiet Days

There isn't a lot of new news to report. Patrick is still with us, and he's still (very) stable. We have him on a regiment of relaxants and pain medication to keep him comfortable, so he's sleepy much of the day (and night). He has a few windows of wakefulness (usually late morning and then again in the early evening), but it's not always consistent. He seems to really hear and understand what we are saying when he's awake, but he's not able to communicate at all with us. There are no more eyebrow raises, hand squeezes, thumbs up or mumbled words to discern. Instead, we're learning to read his body for signs of agitation, stress, discomfort or fatigue.

We spend much of our time with him massaging his (shrinking) muscles, relaxing his tensed joints, re-arranging his pillows for better breathing and sleeping positions, and clearing out various orifices so that he has clean passageways to breathe. Soft music plays around the clock, and between his Aveda lotion-ing products and his lavender air freshener, his room is almost spa-like. (Not a bad place/way to live out your last few days, eh?) For the most part, he seems comfortable and comforted, but it's challenging to know how much he understands or grasps what is happening to him. We do our best to remind him of our love for him, and reassure him that he has nothing to fear in leaving us, as we trust he is going to much better, healthier, joy-filled place. (I of course say this confidently to him with tear-stained cheeks, as I'd really rather that he stay here with us, helping me to raise a healthy, happy family together. But, alas, I don't think it will work out like that.)

With each new day, I dread that it could be his last. And with each goodbye, I fear that it's our final parting. And yet, he continues to hold fast. We have no idea how long this dying process will take: it could be weeks or months. I feel fortunate to be able to spend more time with him, to leave no word unsaid or kiss ungiven before he passes...and yet the ongoing daily grief is really hard, to say the least.  Perhaps it's similar to the last days of my pregnancy with Cecilia, when I felt huge, uncomfortable and so anxious to meet her. I knew what the end result would be, but I didn't know when it would come, or how it would precipitate. So, too, here I know that he'll pass, at some point, but I don't know when or how...and perhaps it's better that way.

Cecilia went to Boston with my sister Amy, "my Mimi", as Ceci says. She was very excited to board an airplane with her new rolling backpack and purse full of goodies. As she confidently strode away from me, looking far more grown-up than she is, pulling her carry-on, and daintily holding her purse in front of her, she shouted back, "bye, Mom! I go to Bah-ton with my Mimi!" She's having a blast with her cousins, and probably less aware of my grief, or my constant trips to the hospital. It's a gift to be able to concentrate on PK's care for now, while knowing that she's happily in good hands.

If you'd like to visit Patrick, or come say goodbye, please do. In general, one of us is there with him from about 9am-10pm, so feel free to stop on by. He'll most likely be asleep when you come, but I trust that he hears us, and knows of our presence with him. (Just please don't try to coordinate your visit with me; I'm barely answering phone calls or emails these days, as it's so hard to regurgitate the latest dismal updates, and I don't always know when I'll be at NIH, etc.) Check-in with one of Patrick's sisters, or our priest, David Hanke, if you feel the need to coordinate a visit or get the latest info.

Thanks for your continual prayer and support. Your love, along with the comforting love of God, continues to give us strength for this long, hard journey.