Saturday, December 31, 2011

Letters to Cecilia

Dear family and friends of Patrick and Julie,

My name is Jaime (Horstman) Barnard, and I have known Julie since our wonderful days at Wheaton College.  She has graciously allowed me to share on her blog and make a request to those who know and love her and her sweet Patrick and Cecilia.  I have a daughter just a few months younger than Ceci, and as I have prayed and wept (along with thousands of others!) for this family, an idea came to mind.

Would you consider taking the time to write a letter to Cecilia?  Would you share your memories, stories, thoughts and love for her daddy?  I am imagining giving Cecilia a treasure chest full of letters that, someday, will give her stories and memories to help her remember and know her amazing daddy.  Perhaps you grew up with Patrick and can share stories that might make her giggle?  Perhaps you went to high school with Patrick?  Perhaps Patrick befriended you in a time of need and there is a story to share?  Perhaps you could relay one characteristic of Patrick that you feel best describes him?  The letter may simply describe the look you saw in Patrick's eyes the day she was born, or the way he carried her or hugged her.

It does not matter how much or little you write or if you know Patrick well, as an acquaintance or as a friend of a friend.  As you write these letters to Cecilia, try to focus on Patrick and how you do know him and what you want Cecilia to know about him.  As we all wade through the heavy emotions that surround this difficult time, it is my hope that these letters would be full of joy, peace and hope.  Rather than focusing on the challenging days at hand, let your letters be a way for Cecilia, in the harder days to come, to travel through time to places and situations that will warm her heart with stories and memories of her daddy.

It is my desire that Julie and those closest to Patrick NOT have to be a part of the logistics of collecting these letters.  Their hours and days are full.  So, please send ALL letters to the following address:

Cecilia Kelly
c/o The Barnard Family
701 Holiday Drive
Fortville, IN 46040

Yes, the letters are coming to Indiana!  When the letters stop coming, depending on how many I receive, I will find a way to contain them ... in some sort of treasure chest or book for Ceci.  Be it five or five thousand, I will make certain these letters are delivered to Julie and Cecilia.  If, for various reasons, you wish to send an e-mail letter, I would be happy to print it off and add it to the collection.  Please email letters to:  You may also use this email address to communicate with me if you have any questions or thoughts.

Thank you again Julie for allowing me to do this for you and Cecilia.

All my love,

Thursday, December 29, 2011

Moved To Hospice

We moved Patrick yesterday across the hall at NIH to his old Medical Oncology Inpatient wing. The ICU staff has been so generous and kind, and offered Patrick to enter hospice-like care there, but we felt it might be more comfortable for him and us to spend his last days in a more relaxed environment. I can't remember his room number, but he's directly across from the nurses station on the 3rd floor SE-N Med Oncology wing at NIH, should you want to visit. (Look for the colorful Christmas lights in his room, and you'll find him!) Several of his favorite nurses from when he was receiving chemo are taking care of him now, and it's been really wonderful to work with them again, weep with them as we watch his labored breathing, and together help make him comfortable. When our days at NIH draw to a close, it will be a tad bittersweet to say goodbye to all of these caring nurses who have become like family over the past few months.

His steroids have worn off, so he's not nearly as coherent or lucid as he was this past weekend. He slept most of the day yesterday, and only awoke when we moved him into his new room and then dressed him in his normal pajamas. (So long silly hospital gown!)  Our hope is to make him as comfortable as possible, remind him how much we love him, and help usher him into the next life as gently and lovingly as possible. We have no idea how long this stage will take. He's in excellent shape, aside from his cancer-prone brain, so it may be quite awhile until he draws his last breath.

Monday, December 26, 2011

He Still Lives

I hope that's not an inappropriately trite title for a blog post, given Patrick's situation. But I know that thousands of you are checking (and re-checking) the blog to see what his status is, and I just want you to know: he's still with us.

We've had a WONDERFUL last few days with him, since he's been on high-dose steroids, and has regained some of his strength, alertness and an ability to feel and understand. He can't speak, but he knows what is being said to him. His mild facial expressions, slow nods of his biopsy-scarred head, and surprisingly strong grips of his hand tell us he loves us, he's with us, and that he will miss us when he leaves.

Thank you for all of your constant prayers for us, especially for Saturday's harrowing day of goodbyes. It was a day that was equally sweet and profound; both sad and joyful. PK's dad arrived from China and was able to connect with him, share his tender fatherly love and sweet memories of their family life growing up. Slowly our families began trickling in, and then my sister Amy brought Cecilia into see her Daddy, for the last time. She was far more brave and joyful than any of us expected her to be. Dressed in a shortened yellow hospital gown, she looked like a little angel, coming to bring some sort of cheer on Christmas Eve. She climbed up on his bed, gave him kisses and hugs, and (much to our delight and astonishment) he was able to kiss her back and squeeze her hand. We also brought in some gifts for him to give her, so that she'd always have something tangible to remember him by, in the dark days ahead. Heath, our new brother-in-law and filmmaker extraordinaire, taped the whole thing so that we'll be able to remember their parting moments, when she begins to forget or ask questions about her daddy.

We were joined by our two current priests, David and Erin, and also by John Yates, who is the Rector of The Falls Church and a longtime family friend of the Kellys. David led us in a tender service of last rites and Holy Communion. Although we cried through most of it, we were also reminded that there is much joy in the life to come. I am so thankful that God is greater than all of us, and that He will be remain with us through the challenging days ahead. Patrick's sterile hospital room was momentarily transformed into a seemingly hallowed space where, as family and friends surrounding his bed, we prayed for him, sang to him, and together remembered the life and death of our Savior, in whose strong arms Patrick will soon rest. Patrick's presence and involvement was such a blessing to all of us, (he even mouthed "Amen" at an appropriate time in the liturgy!)

It has been such a gift and answer to prayer to have him "back" with us these past few days, but of course we all dread the day when he will leave us for good. My heart is breaking, over and over with each new day, as I anticipate my life without him. And yet I know he is going to a much better place, where there will be no more mysterious cancers, no more hospital beds or IVs, no more tears, and no more death. We're not really certain how long he will hang on for; it could be hours, days or weeks. 

For those of you wondering about a funeral service, or worrying about it interrupting your holiday vacation, I just wanted to give you a little heads-up on what we're "planning".  Patrick has told me that he'd like his body to be given to NIH when he dies, so that they can do further research on his brain, and thus hopefully save other lives through what they learn, even though they couldn't ultimately save his. (His courage and generosity will extend even into his death.) So, depending on when he does pass, I would think we would wait until after the new year to have his memorial service. It will be held at The Falls Church, here in Northern Virginia. (Obviously, more info will be posted regarding that, but I wanted to pass that initial info along to you, in case you were curious/wondering/trying to make plans, etc.)

For now, I hope to spend as much time with him as I can, reminding him how much I love him, and how loved he is by so many others - all around the world. Thanks for your prayers, all of the food that has shown up on our doorstep over the past few days, the cards, presents, and endless words of encouragement. It's been such a blessing to be surrounded by such a huge, growing community during this time of such intense sorrow.

Peace be with you this Christmas season.

Friday, December 23, 2011

Final Days

It's late, but I wanted to write and quickly update all of my faithful readers (all 12,000+ of you who checked the blog in the last 24 hours!!!) We met with Patrick's medical team today to discuss the recent findings and to decide where to go from here.

The short of it is that Patrick is not slated to get better, instead he is expected to worsen and pass from this life into the next in the near future. When, we don't know. But there are no signs of improvement, and he is deteriorating rapidly with each new day.  NIH has done absolutely EVERYthing in their power and in their scientific imagination to heal Patrick. They have run more tests than any normal hospital would ever run, to determine what exactly is killing my sweet Patrick. He has a complicated disease, and they don't know how to fix it.  So, we are following Patrick's request, and not extending his life using extraneous measures. It breaks my heart 1,000 times over to have to say that, to have to anticipate my final goodbye to the love of my life, and yet, I know there is nothing these brilliant, yet kind doctors can do to make him better. We continue to pray for God's miraculous healing upon Patrick's strong, but now feeble body. I believe that God can heal, but I also don't know that He will in this case, and I need to be okay with that right now. Please pray, on my behalf, please have faith on my behalf, and please honor Patrick on my behalf.

His dad arrives from China late Friday evening, so we are keeping him stable, connected to all of his feeding tubes and IV fluids until Saturday morning. At that point we will make him as absolutely comfortable as possible, dress him in real clothes, and soften the scary ICU room a bit so that our dear Cecilia can come in and see him, and say her goodbye. We're going to give him a high-dose of steroids, in the hope that he will be able to muster some new, temporary strength and awareness. We would love to be able to say farewell to him while he still knows who we are. We'd love to hear his voice once more, if there's any voice left to give. And mostly, we just want him to know how much we all love him, will miss him, and are glad that he will be resting in the firm, loving arms of our God very soon.

So, if you would like to come see Patrick and say goodbye to him, please do so in the next 24 hours. Come Saturday morning, we are asking that you respect our privacy for a few days, as we, his family, say our personal goodbyes, grieve privately, and enjoy our last hours with him. (Granted, it's Christmas Eve, so I'm sure you have other fun places to be anyhow.)  If he's still hanging on with us, come Monday, we may open up his room for visitors again, but we'll cross that bridge when we get there.

Thank you, thank you, thank you for your overflowing love for Patrick and for our families. Thank you for your support and prayers through all of this. It's the hardest season I have ever had to face or endure in my life. I dread the morning when I have to wake up as a single mom, and face each day without him by my side. For now, I'm spending as much time as I can with him, and hoping that he knows how much I love him, and how much I will miss his presence in my life.

If you have logistical questions, or are trying to reach me, please contact Patrick's sisters JoAnn (703)731-3958, or Christine (571)214-7840, my sister Amy (508) 377-2088, or our priest David Hanke (571)521-9081 for now. I'm not really able to respond to much of anything these days, so bear with me and my absence from all things normal for now...

My sincere love to each of you this night.

Wednesday, December 21, 2011

Prayer vigil for Patrick!

 (another guest post from Ali)

In the midst of a difficult, sad time, it is beautiful to think of the people all over the world praying for Patrick.  There are folks in both hemispheres, people from various faith traditions, people who knew Patrick as a child and people who have never met him. We are united in our love and hope and grief.

Julie, Patrick and the rest of the Kelly family are so grateful for your prayers.

As friends of Patrick, we’re organizing a virtual prayer vigil to cover Patrick and his family in our love and prayers.  You can sign up in thirty-minute increments on this google document:

Please just follow the link and put your name in as many prayer timeslots as you would like! It should be quite simple. You may also put your location, if you want to. How wonderful it will be for Patrick’s family to look at the list and see how people all over the world (friends, family and people they've never met!) are holding them up in prayer!

You can also write a prayer here in the comments section. These prayers can be an encouragement to Patrick and his friends and family. (I like the thought of reading them to Patrick when we visit him at NIH.)

For those who like to pray by name, here are the names of Patrick's immediate family members:
Julie --Patrick’s wife
Cecelia- Patrick’s two-year-old daughter
JoAnn, Christine – Patrick’s sisters
Claire- Patrick’s mom
Tim- Patrick’s dad

How to visit PK at NIH

Hi team, this is a guest post from Julie's friend, Ali, to assist those of you who have asked how to visit Patrick at NIH.

First, as Julie mentioned in her last post, she would love for you to visit. But she can't coordinate visitors, and it's hard to predict when will be a "good time." So just go, but be prepared that you may have to wait a little bit to see Patrick.  If the nurses are doing something with him, they'll have the door closed and will tell you when you can go in. At least one of the Kelly women is always there too.

NIH is located off of Rockville Pike in Bethesda, MD.  You can drive there or take the red line to "Medical Center." There are excellent directions here: 

Patrick is in Building 10, Southwest/South ICU unit, 3rd floor. Room 7

There are visiting hours, but they are not strictly enforced. Typically, the Kellys are trying to get him settled for bedtime around 8:30 or 9p, so it is best to come before that.

For those who like a little more information:

Allot extra time for the security at NIH. If you drive, your car and all the bags in it will be inspected. If you arrive at night, drive into the "deliveries" entrance.

Building 10 is the tallest clinical building on campus. There's a parking garage below Bldg 10, as well as one right next to it.  There's security to get on the campus, but once you're in building 10, it's like a normal hospital.

Once you get up to Patrick's hallway, there is a sign on the door to the hallway that says "caregivers only," but just go ahead and open the door or ring for a nurse to let you in. Before you go in his room, you'll need to put on hand sanitizer, gloves and a paper gown (over your clothes). They are in a station outside his room. The yellow gowns are very becoming.

Children are generally not allowed in the ICU. If your family comes, the adults could take turns going in to see Patrick. There is a waiting room on the third floor with a TV and a table, and there is a large atrium in the lobby (with Christmas decor).

Tuesday, December 20, 2011

Not-So-Great News

(Warning: I'm writing this through tear-stained contact-filled eyes, so I'm hoping this update makes some sense. Forgive me if it doesn't. I think you'll get the gist of what I'm trying to say either way.)

So, Patrick had his MRI this morning, followed by a spinal tap. (Thankfully, the boy was given strong sleeping drugs, so he was out of it for both of the procedures.) The MRI results have come back and show "new lesions" throughout Patrick's brain. These lesions are most likely the potential return of his lymphoma. We would only know for sure if neurosurgeons were to do yet another brain biopsy, but with that comes all sorts of potential complications.  There is white matter now showing up all over his brain (and not just confined to his corpus collusum, as it has been before/up until now.) Radiation would be the only available cure for the cancer, but given the weakened status of his brain, it might not be a viable or kind option to him. His brain is breaking down, bit by bit.

The doctors have also articulated that there are two processes at work here: 1) the lymphoma and 2) something else. The "something else" is what is likely causing his rapid neurological decline. They are still waiting for the results to return from his spinal tap (and some of them have been sent to other various top-notch research hospitals for specific testing), but his oncologist mentioned to me today that his decline is most likely not reversible.  He is even wondering if Patrick could actually have Mad Cow Disease. (Of all things. Seriously??!!?) The spinal tap results should reveal whether it is MCD, or something similar (or something totally different altogether). Either way, it is most likely terminal.

So, if you're close to Patrick, and want to see him in person while he is still with us (and cognizant to see you and respond to your visit), come! I know the timing is awful. (What better way to celebrate Christ's birth into this broken world but by remembering that we are indeed so very broken, as evidenced in Patrick's now-broken body, eh?)  We're going to meet with his entire medical team later this week to discuss their findings, and our options for where we go from here. I have NO idea what the time-line will be, so bear with me as I slog through the next few days (while also trying to muster a bit of Christmas cheer for my budding 2 1/2 year old who might need to say goodbye to her sweet daddy.)

The outlook is dismal, friends. I have wept more in the past few days than I have cried in my lifetime. And I know there are many more tears to come...(let's just say waterproof mascara is my new best friend.)

I will try my best to keep you updated as much as I can. Forgive me if I don't return your calls, facebook messages, texts or emails. It's hard to emotionally regurgitate sorrowful news over and over. Know that I love you, appreciate you, and covet all of your prayers, love, gifts, visits, messages, etc.

For those of you who pray, we are hoping to orchestrate a massive day of prayer for Patrick. I'm at a loss for how to do this right now, and wonder if waiting until Christmas Eve will be too late for such a thing. So, for now, please fervently pray for healing! Barring a miracle, I don't think Patrick will be with us much longer...which is just about the most devastating Christmas news I would want to share. But I worship a God who loves us, who is merciful, and who can heal our bodies. Please pray that he does heal Patrick. And if it's not in his plan to heal one fantastic Patrick Alexander Kelly, please pray that he takes him gently into his arms, healing his broken body, while giving all of us who love him so deeply the strength to go on without him.

Monday, December 19, 2011

Showing Little Improvement

Patrick has shown little improvement since when I last wrote. He has enjoyed a bit of food, and that seems to have put some color back into his face, but each day gets harder for him. Three days ago, he was able to ask his sister JoAnn "where's my wife?" (cute), but we can't get any other words out of him now. He was swallowing milkshakes, smoothies and sweet potatoes on Friday, but wasn't able to swallow anything come Sunday. He still has his feeding tube, so he's receiving 1500+ calories a day through that, but we'd love to see him eat something tasty as well!

It's hard not to lose hope. His brain seems to be shutting down more and more each day. He's able to give very few (if any) responses to us now. He's sometimes able to move his head in the direction of no or yes, but even his ability to kiss, or purse his lips at me has disappeared.

He's supposed to have another MRI today (or early this week), so we hope that is revealing and helpful. The doctors are considering running a variety of tests to see if he has some sort of strong gluten allergy, Lymes disease or any other sort of disease that could be debilitating him.

Please pray for a miracle. We're hoping to organize some sort of (virtual) Day of Prayer for Patrick, perhaps for Christmas Eve, so that we together, from around the world, and from just about every faith background, can surround Patrick with our love and prayers, and intercede on his part for some radical healing--for a Christmas miracle! Stay tuned. I'll post the details on that when I have them.

I'll let you know as I find out more. Please continue to pray for him!


Thursday, December 15, 2011

1 Step Forward...2 Steps Back...

Patrick has had three strong days this week. He's been speaking more, responding well to physical therapists, and enjoying the strength that comes with his new steroids, which are meant to shrink any inflammation or potential lymphoma that may linger in his body. His sister, JoAnn, arrived on Monday and Patrick has really enjoyed her company (and we've really appreciated her new conversation topics and energy to stay at NIH late into the evenings!)  I finally returned to the hospital today, after three days away--his three stronger days, go figure--miserably battling bronchitis at home.  I'm glad I returned, as Patrick seemed to really perk up when I walked in. BUT it had been a really hard night for him, and I could instantly tell he wasn't doing too well.

He didn't get much sleep last night, as his heartbeat had begun racing quickly, so the staff struggled all night to get him to relax, and help him to sleep with appropriate meds. He was finally sleepy and relaxed this morning, as the sleep meds had finally set in, but he looked gaunt to me, as if he'd lost 15 pounds since I left him there on Sunday. He looked really sick, and I've got to admit that it was really hard to see him like that, while still trying to rally enough cheer and optimism to remind him that all of this is just temporary, and tomorrow is going to be a better day. His short sentences of yesterday became hard-to-decipher grunts that were meant to be words today.

The drs don't have answers as to what is happening, and they are trying their hardest to get him back to his pre-seizure level of awareness, strength and health. He has a feeding tube in his nose that constantly pumps high-caloric Boost drinks into his belly, and we're working hard to feed him soft food that will taste good and fill him up. He needs to be physically strong in order to beat this thing, and admittedly, feeding him and helping him relax when he becomes agitated is about all we can do, while the drs do their thing.

I cried the whole way home from the hospital this evening, praying that God would take this awful cancer thing (and it's mysterious complications!) away from Patrick; that God would heal him and make him strong again. It's hard to believe that he will, after days like today, but I do hope that God will be merciful to us. I would really love to see my sweet husband sipping on champagne at festive Christmas parties, or enjoying the pretty lights on our fake little and borrowed Christmas tree at our (temporary) home.  Instead, he sips a milkshake from a spoon we hold to his mouth, and we together watch the colorful little lights flicker on the medical monitors sitting beside his bed.

Angels from near and far are hanging all around us, thanks to the creative idea of some dear friends. We have paper cut-outs, marker-colored and sticker-covered ones, beautiful sparkly ones, ceramic ones from Lithuania, delicate figurines, and the list goes on and on. It's been such a blessing to receive so many poignant reminders that in this yucky season of our lives, our friends and family--like angels--surround us night and day. In this season of Advent, when we wait for the coming and glorious birth of our Savior, I am reminded that angels came to Mary and promised her the birth of something new, along with the needed support for what she would need to handle such a challenge.  I, too, wait for the coming of our Savior, and wait eagerly for the miraculous work of our incarnate God to bring something new out of our dark, hard-trodden days at NIH.

God, have mercy, I pray.  Come heal Patrick; bring light and healing to him this night.  Allow him to sleep peacefully, regain his strength, and be ready for the long road to recovery. Just as you came to Mary in the quiet cattle stall in Bethlehem, so many years ago, come to Patrick tonight, in his quiet ICU room, and heal him, be with him, and give him faith that you still do have a hope and future for him...for us.

Tuesday, December 13, 2011

Getting Better With Each New Day

Patrick continues to progress. He's passed his swallow test, so he's slowly working up to eating normal food again, which he's thoroughly enjoying. He's speaking and understanding what's being said, so that's very encouraging. He's having some sort of reaction to something which is causing him to feel itchy (and then agitated from not being able to itch himself constantly).  So he's taking benadryl for that, which then, of course, makes him super sleepy.

His drs are hoping to transition him back to a normal inpatient room soon (any day?), and there he will continue to work with physical therapy to regain his balance and coordination, while his drs work to determine what caused all of this, and what to do with him next.

I'm home with bronchitis and a double ear infection (I thought those were only for toddlers!?), so I'm banned from the ICU for a few days, until I feel better. Thankfully, Patrick's older sister JoAnn has arrived from Seattle for the holidays, so there's another person on hand to help Claire and Christine care for PK while I'm out of commission.

Continue to pray for answers to his neurological decline...we'd really love to see him up and walking (and home!) for Christmas!

Friday, December 9, 2011

A Good Friday

It's amazing to see how far Patrick has progressed since Sunday morning, when he was put into his coma. Even since yesterday, he's made great improvements! When I came in this morning, we were able to have a pretty interactive conversation -- he could ask me how I was, he told me he loved me, and that he was sorry for all of this. He also (repeatedly) asked for a hamburger and a smoothie. The boy is hungry. He should be able to pass his swallow test tomorrow, and then move onto a clear liquid diet (not exactly a hamburger, but we're moving in the right direction!)

He was also able to move both arms on command, make appropriate gestures when asked, and even itch his own nose. I realize these sound like minute developments we parents get excited about as our little one grows up before our eyes...but when your husband is in a coma for 2 1/2 days, and you have NO idea what sort of mobility or cognitive acuity he will have if/when he returns from la la land, these developments are reason for great excitement!

He had a Petscan done this afternoon, to determine if there was any new cancer activity in his brain, and at first reading, there doesn't appear to be any, but that will be confirmed next week, when his medical team is back in action. But, the fact that there weren't any obvious indicators of new growth is encouraging. We're still hoping to have answers as to his neurological decline over the past few months, but in the meantime, we are SO very thankful at how well he is doing right now, given the recent craziness.

I've been praying for God to heal him, and for God to show us mercy in all of this, and I believe he is doing both...even if in very small ways. But those very small ways are reason to rejoice! Thank you for your fervent prayers, concern and love for us. In the midst of this insane week, I have felt supported and held up by something much stronger than my own feeble strength. Thank you for being a part of that support system!

Thursday, December 8, 2011

Baby Steps!

We are watching (with great delight) Patrick's daily progress. When I arrived at the ICU yesterday, his eyes were wide open, he seemed much more calm, and his left arm, which has been moving spasmodically since he awoke from his coma, was less agitated. It seems that when he's more relaxed and well rested, his entire body is more at peace. (I guess that's true for all of us, no?) He spoke a few words yesterday, which was so exciting. He was able to say "hi" to Erin Bair, one of our visiting priests, and express appropriate indicators of his basic needs: "thirsty" "need help", and "pee". He really seems to perk up when visitors come, so if you're local, and if you're comfortable seeing him in an ill-fitting hospital gown, (and if you're willing to brave NIH's security), please come visit! I can't really handle coordinating your visit, or telling you when it's a good or not-so-good time to come, so just come. You may have to wait in the ICU lobby for a few minutes if he's having a procedure or getting cleaned-up, but in general he'd love to see you! He's able to make facial expression, so if you remain equally persistent and patient, you can communicate with him fairly well. I watched him smile at Dave Whitfield's stories last night, and communicate, using his (thinning) eyebrows, his thankfulness for various ministers and friends of ours that stopped by throughout the day and evening. He doesn't have loads of energy, so just keep your expectations low at this point!

His doctors are pleased at his progress. They'd like to see him pass his swallow test today, and once he does, he'll be able to get some food and drink into his body. Up to now, he's been surviving on IV fluids and wet mouth swabs, so I'm sure he's pretty hungry for something tasty, even if it's pureed. :( If he consistently improves, and if he is able to reach certain benchmarks in his ability to physically respond to various commands, he may be moved out of ICU on Monday (or thereabouts), and head back to his inpatient unit across the hall at NIH. At that point, the drs will further assess his neurological issues, and how to proceed with treatment.

So, please pray that he will continue to improve, that he'd pass his swallow test, that we'd all be encouraged with how well he is doing, and for wisdom, along with the drs, to know what to do next. I've come down with some sort of nagging cough/cold, so it would be great if that rapidly disappeared, too. I don't want to get him sick at this point, but it's also so hard to stay away from his bedside.

If you would like to visit, he's at NIH, which is located off of Rockville Pike in Bethesda, MD. (Just google it for directions.) He's in Building 10, which is the tallest clinical building on campus. He's on the 3rd floor in the ICU, Room 7. There's a parking garage below Bldg 10, as well as one right next to it.  I don't think there are strict visiting hours, but typically we're trying to get him settled for bedtime around 8:30 or 9p, so try to come before that, if you're interested.  There's also a metro stop right on campus - I believe it's called "Medical Center", or something like that.

Thanks for being a part of Team Patrick!

Wednesday, December 7, 2011

Waiting for more improvement

It was such an answer to our (and your) prayers that Patrick was able to be aroused from his coma, and to have his breathing tube removed yesterday. Doctors had predicted it would be another few days before that would occur, so they are pleased at his determination to get better. I suppose I was expecting him to bounce right out of the coma, talking, laughing, being himself, etc., and of course he didn't, which is totally normal. His neurologist predicted it could still be a few days before he comes back up to a more normal baseline level of interaction. So, for now, he's still not talking, or interacting very much, which is sad to see. He lifts his eyebrows and make slight facial indications and reactions that are totally Patrick, so that's been sweet to see. He's back from coma-land, but still not totally with me yet.  He obviously can't do anything on his own, so it's hard to see, given my naive hopefulness. Again, apparently he's on a typical pace of progression, from having had such trauma occur to his brain over the past few weeks, so it will be harder for him to bounce. He's drowsy today, and they've giving him a slight sedative to help relax him. He has some involuntary movement on his left side, that could just be some sort of tic that has now been exasperated from the trauma and the exhaustion from it. So, hopefully he'll be able to rest over the next few days, gather his strength, and start moving towards a state of more alertness and good health.

We still don't have a really good gauge as to what to expect when he's all said and done and out of the ICU (nor do we know when that will happen), so we're still watching and waiting, hoping and praying, each and every minute of every day. Please continue to lift him up! Your prayers are moving heaven and earth for us and for him, and we still need them! Yesterday was a big day, but as my mother-in-law reminded me this morning, he/we are not running a sprint, but rather we're in a marathon, and we need to be patient with the progess.

Thanks for checking back, praying and being concerned! We had over 3,000 people read our blog yesterday! It amazes me how surrounded we are by your love and prayers -- really from all around the world!

Tuesday, December 6, 2011


I don't know if you really care to know the minute-by-ICU minute updates on Patrick, but I thought I'd send a quick midday blip on how PK is progressing. When I arrived this morning, it was very evident that he had improved over night. He had begun to open his eyes and make small gestures when asked. After a few hours of positive improvement, his drs decided he was ready to be extubated. I asked him if he was ready, and he adamantly showed us a thumbs up! I then asked if I could kiss him and he puckered his lips around his breathing and feeding tubes. This, obviously, warned my heart, but also gave the drs a sure signal that he was indeed ready to breathe on his own!

So, he's been extubated, brought up out of his coma, and is now resting with a simple oxygen mask. He's still really drowsy, and not making great efforts to communicate, but all of this is to be expected, given the fact that he has been in a coma since early Sunday morning.

As the team was getting ready to remove his tubes, I could sense the active presence of your fervent prayers and love for us in that room. Several of my requests have been answered, in such a short time, for which I am so glad: he's out of his coma, he's breathing on his own, and the drs are forming some new conclusions as to why he has been deteriorating so quickly! Please continue to pray for their wisdom, and for his complete healing! We have no idea how he is doing neurologically yet, if we'll need to continue chemo, or if there will be any other deficiencies...but I suppose we'll mount each day's hurdle as it presents itself.

I feel like I witnessed a mini-miracle today....and anticipate many more to come over the next few days!

Thanks for faithfully coming alongside of us...

Monday, December 5, 2011

Not much news to report

Thanks for all of your emails, phone calls, fb messages, blog messages, etc. I tear up every time I read or receive one, as it's a poignant reminder that we are not alone in this fight for Patrick's life! Your prayers from near and far not only lift my spirit and encourage me when I'm down, but also, I believe, move heaven and earth, when all I can do is hold onto my Patrick's stiff hand.

The short of it is that he did not wake up today. He started running a fever last evening, and they've discovered that he's developed some sort of pneumonia, from aspirating vomit into his lungs during Sunday's seizure. So, they have him on antibiotics, continuous anti-seizure drugs, sedatives (to make him comfortable), and of course a breathing tube (and all that goes with it). His levels are still pretty healthy/normal, so that is good. Perhaps, because of his brain trauma (from receiving mounds of chemo and from fighting two gnarly tumors), his pneumonia, and all that he's been through neurologically over the past few months, he's not responding as quickly to the reduction of the sedative as the drs would like to see. In other words, he's not waking up as quickly as expected (if at all), not responding appropriately to commands to lift certain limbs, squeeze certain hands, or open his eyes. The medical team is changing his sedative to something different, which may not cause him to be in as deep a sleep, nor demonstrate as much agitation when he awakes.

So, if he's feeling better tomorrow, if his vitals are good, and if his temperature is down and stable, they will try to bring him back to consciousness.

I suppose my requests for prayer remain the same. Each day without him beside me feels like a hellish eternity. I peel open his eyes, and peer directly into them, hoping he sees me, begging him to come back to me, praying that he hears me. Tomorrow could be the day; let's pray that it is!

Sunday, December 4, 2011

Still Comatose

Claire (PK's mom), Christine (his younger sister) and I spent much of the day with Patrick today in the ICU. I'm fairly delirious right now, so I do hope this makes some sense:

He's still in his medically-induced coma, as the drs monitor any potential seizure activity. So far there has been none, since his big seizure early this morning around 1am. Granted, he's on a heavy dosage of anti-seizure drugs, so he shouldn't head in that direction anytime soon. They performed another CT scan this morning, and compared it to last night's scan, and it looks the same -- which is great news! There appears to be no brain swelling or bleeding. They also performed an extended EEG, where they mapped his brain waves while in the medically-induced coma, and while attempting to wake him up out of his stupor. He appeared to have very regular brainwave activity, and no seizures or spikes in the wiggly lines on the screen. So, that is also a good thing. With the help of Steve and Nancy Skancke, we tried to wake him up today (per the drs request), so he was a passive participant to Steve's crazy stories and rambling antics, and a victim to Nancy's feet tickling. Both caused a few stirs, and once he  peeped his eyes open, but only just for a second. Because he's responding, even if very minimally, the drs are encouraged that there is likely not severe brain damage (if any).

After awhile, they decided to re-administer the sleep agent so that he could rest deeply, while they adjusted his anti-seizure meds tonight. They will try again in the morning to wake him up. If they can receive certain signs of cognitive awareness, they will extubate him, and pull all the other various tubes that are poking their way uncomfortably into his body and various orifices. (Ahem.)  I assume he will be fairly uncomfortable when he awakes, but we hope he DOES wake up.

Days ago I was bemoaning the thought of living with a (even if partially) disabled husband for awhile, and now I'm just hoping for another day, week or year with him. He's a fighter, and I trust/hope that God is not yet done with him on this Earth. (I know that I'm certainly not done with him!)

Will you pray with me...
...that he'll wake up out of his coma tomorrow?
...that there will be no long-term effects from his seizure (or the coma)?
...that the drs will find the answer to his rapidly declining neurological state?
...and that they will have wisdom as to whether or not to continue chemo at this point?

We covet your prayers, friendship, concern, well wishes and words of encouragement. Patrick is sleeping soundly tonight, and he's being monitored very closely - so that gives me a wee bit of peace right now, as I anticipate another rough and tiring day tomorrow! My folks are here, and plan to take Cecilia back to PA with them in the morning, so that takes a large load of worries and responsibility off of my proverbial plate.

A Rough Night

I received a call from Patrick's nurse around 6:30pm last night that he was having seizure-like symptoms, and that I should come in ASAP. By the time I got there, they symptoms had stopped and he was seemingly fine. PK's mom and sister were there, too, and by the time we left him at 10pm, he was ready for bed, and in good spirits (still unable to walk around by himself.)

I then got a call at 1:30am from his nurse that he had had two more seizures, one pretty intense (and long, and lasting for about 10 minutes), and that he had been transferred to the ICU at NIH. They tried to put in an IV to give him anti-seizure meds, but he didn't respond, so they put him into a medically-induced coma, intubated him, and gave him stronger meds. He's quieted down now, and they will run an EEG on his brain today to see if there is any more seizure-like activity occuring.  Depending on how things look, they hope to bring him out of his coma tomorrow (or late today.)

PLEASE PRAY! He needs to be healed, the doctors need wisdom, and that the seizures would end!

I'm headed to NIH now, and my sister is staying with Ceci until my parents arrive from PA this afternoon to take her back with them for a few days, while we sort this out. Thankfully, she goes really easily to them, and I know she will have a blast.

I'll send out more news when I have it.

Thursday, December 1, 2011

No news is...well, no news.

We met with Patrick's oncologist today, and they still can't figure what is causing his worsening-by-the-moment symptoms. They suggested that we check him into the inpatient hospital at NIH for 24-hour surveillance, and in order to run more tests (an MRI of the brain and spine, which will happen tomorrow, for starters...). His doctor also ordered that he go off of all of his medications (cold turkey) as of tomorrow, so that they can see what exactly is causing all of the coordination issues and motor interference. Thankfully, he'll be in the hospital while he's detoxing from all of the meds, in case anything goes haywire, but it might not be a pleasant few days for him. :(

We did convince his medical team to let us check him in late this evening (versus earlier in the day), as we had planned to (finally) celebrate his birthday with his family, while his dad was still in town. So he filled up on delicious Swiss fondue, french baguette, and dark chocolate cake, before he checked into NIH just about an hour ago.  Hopefully we'll have more news in the next few days to report. At this point, they're holding off on starting his next round of chemo until they figure out what's going on with him, and until he has more strength and stamina to be slammed with another bout of toxicity.