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:  letterstoceciliakelly@yahoo.com  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,
Jaime

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.

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.
Julie

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.

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:

https://docs.google.com/spreadsheet/ccc?key=0AmsyCGbxTIludHRxQzRyaDFKUXRaNHJoVGgyQ3pOU1E

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:

http://clinicalcenter.nih.gov/about/visitor/dir_to.shtml 

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).

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.

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!

Thanks,
Julie

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.

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!

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!

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!

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!

Extubated!!

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...

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!

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.

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.

Waiting for another "sweet spot"

As I was looking back at my calendar today, trying to track Patrick's progress throughout his cancer journey, I realized that there was a 2-3 week heavenly "sweet spot" between the time of the GOOD NEWS and his recent decline. When we received the GREAT news that Patrick's tumor had disappeared from his recent MRI scans, we were overjoyed, relieved and excited---thinking once again about a happy, healthy, thriving future for our family. I continue to praise God for seemingly plucking that nasty tumor from PK's brain, but, honestly, I also want to shake my fist at Him some days, since Patrick seems to now only be declining.

Over the last few weeks, Patrick's tripping and clumsiness (ie: neuropathy) has taken a MAJOR turn for the worse, to the point where he can now barely walk, do anything mobile on his own, think clearly or express himself well. Patrick's dad is visiting us this week from China, and he's seen him significantly worsen daily, even while he's been here. The doctors have various speculations as to why this is happening now, but none of their conclusions are certain, and none of their suggestions for a cure seem to be working. We've removed various chemo drugs from his protocol, we're weaning him off of an anti-seizure drug, and doing anything else we can think of to help him improve. And yet he spent all of this morning in bed, even after sleeping soundly through the night. I was upstairs in the kitchen getting lunch ready today, when I heard Ceci call up to me, "Mama, Daddy fall near my potty! Be careful Dada, be careful Dada, uh, oh....Mama!" (No two year old should have to watch her daddy fall, or know how to warn him to be more careful. Shouldn't it be the other way around?!?)


Will you pray earnestly with me that he will improve (soon!)?  We're all pretty discouraged, and I for one am EXHAUSTED. The Bible says that God assigns us our portion, promising to give us no more than we can bear...but I've got to admit that I think my portion is a little too hefty for me right now. I'm in total survival mode. My arm muscles have become strong as I lift our tall 2 year old onto her bike, or into her car seat. And now they need to get even stronger, as I lift my husband back into bed when he falls out, or heave him off of the couch, so that I can help carry his wobbly weight to the bathroom. I'm having flashbacks of my high school job in the neighborhood nursing home, where I'd help the nurses pick up an elderly patient who had fallen to the floor, or hold a fragile, wrinkly arm as I guided an aging hero to their walker or chair in the dining hall. (Who would've known that those learned arm holds and balance techniques would come in handy with my 34 year old husband fifteen years later??)

We meet tomorrow with Patrick's oncology team, who could likely suggest that we get another MRI to see if there's anything new happening in his brain. Will you pray with me that he will have another clean scan, and/or that there will be a very clear reason as to why he's feeling so poorly now? He's then set to begin his 5th round of chemo on Friday, and this one will be done inpatient again, to protect him from injuring himself while attached to his chemo bag.  I'm sad to see him heading back to the hospital again, but I'm also a wee bit relieved that I'll have a tiny break from caring for him 24/7.

Please also pray that we'd be granted a deep sense of peace and hope in the midst of all of this. It's SO hard to imagine what our future looks like now, when today feels so grim. He's slated to bounce back 100% from all of this, and go on to live a full, happy and healthy life....and yet it's really hard to imagine any of that right now. Our oncologist warned us to put off expanding our family for the foreseeable future (if at all...) given Patrick's condition right now; and although I see the practical truth in his suggestion, I grieve at the potential loss of our dream for more kids. He also indicated that if Patrick had received standard treatment at a normal medical facility, given his kind of cancer he would likely only have 2 years left to live. But given the radical (even if uncertain) protocol they used on him 7 years ago, and the one they are administering today, he should have a longer lifespan than that... (Here's hoping for 52 more years!) We celebrated his birthday yesterday in a very understated fashion, as he wasn't up for much celebration, but we did sing Happy Birthday to him (Happy B-party, as Cecilia sings it...), and the silly tag line "and many more..." felt anything but silly this year.

I feel like I'm rambling (sorry), but I can't seem to order any of my thoughts or feelings these days.  Thanks for praying, caring and keeping up with all of this: it means the world to us. I'll let you know when I learn more.

Dang You, Neuropathy!

So all of PK's tests and scans have come back clean, which means he has NO new/more cancer, NO bacteria/infection/virus, etc causing his neuropathy (which shows itself as clumsiness, a lack of coordination, sudden falling, legs buckling, etc.) The good news is, obviously, that there isn't any new cancer bugging it's way into PK's body. After days of no answers, here is what the doctors are telling us now, and I'm just going to cut and paste this from a recent email Patrick's dad sent to his friends, explaining the latest and (not-so) greatest:

Greetings,

Thanks for all the warm messages of love and support, which mean more than you know.  It reminds me of what a Fuller professor told me last time Patrick went through chemotherapy - "such crises give us the opportunity of showing you how much we love you."

Patrick received some very tough news yesterday.  After many tests and much deliberation, his NIH doctors - Wilson & Dunleavey - have concluded that the neuropathy he is experiencing is a result of the chemotherapy after all.  Their hypothesis is that one of the chemos used 7 years ago left a vulnerability that was then triggered by two of the chemos in his current "cocktail."  They've removed those two now, but the bad news is that the nerve damage is permanent.  This means that Patrick has lost the function of some of the nerves in his right leg, which makes it impossible to walk without help, and also some of his short-term memory capacity.  The docs believe that in both cases full functioning can be eventually recovered through intensive rehabilitation, and have referred Patrick to a superb rehab facility that will work with him as soon as he is ready.  Thankfully, the body is amazingly flexible and resilient, and can develop alternative pathways to regain a damaged function.  However, it's a long road to get there.

So, the road ahead will most likely include physical therapy (to strengthen his limbs and coordination), and cognitive therapy (which will strengthen the neuroplasticity of his brain, helping it to re-grow to it's former agility). We're obviously disheartened at the potential for a long recovery period, and the fact that just three weeks ago he seemed "fine". But, we are trusting in God's providence and mercy to help us through this new hurdle.

As we look ahead to Thanksgiving this week, we are thankful for so many things:

-PK's remarkably quick response to chemo

-NIH taking us on, and their amazing care of Patrick

-Steve and Nancy Skancke taking us into their home to live with them during this strange season of unknowns

-So many friends and family who have demonstrated such poignant and tangible displays of generosity, kindness, love and sacrifice for us

-For Ceci's health, joy, and apparent resiliency in all of this

And we look forward to next Thanksgiving when we can be thankful for a clean bill of health, maybe the promise of a new baby on the way, direction for PK at work, and clear vision for our family as we try to figure out where God might have us be/live next.

Thanks to you for hanging in there with us. It looks like the road to recovery will be longer than we had imagined, and we continue to be so thankful for each of you (even those we don't know or haven't met yet!) who are reading this, praying for us, checking-in with us periodically, sharing our story with others, etc.

Blessings to each of you this Thanksgiving!

Patrick, Julie & Cecilia

Results Pending...

There is not a lot of news to report, except that whatever initial results have come back from Patrick's EEG and spinal tap have been clear or inconclusive. There were several factors studied from the lumbar puncture, and a few of them will take a few days/weeks to register a result, so we're in the wait and watch mode right now. PK will be at NIH through Saturday, while he's receiving chemo, and maybe longer, if something new comes up...

I'm leaving tomorrow to spend a long Thanksgiving week with my family in Boston, and PK is slated to join me Tuesday-Friday. We'd REALLY love for him to be there, but we're taking it day-by-day, hoping and praying for good results. Thankfully his mom and sister (and family) are here to keep an eye (or two or five) on him while I'm gone.

Please pray for good but conclusive results to all of his recent testing! The unknowns are driving us crazy! He's still having a LOT of issues walking, as his balance and gait are totally off, and he's also been nauseous and frequently vomiting over the past few days, so the doctors are scratching their smart heads, trying to figure out what's going on. Answers (as pleasant or unpleasant as they might be) would very helpful right about now!  We'll update you as we find out more.

New Tests Planned...

I heard from Patrick this morning that his doctors are scheduling some new tests today, to determine what is going on with his wobbliness. Apparently, they don't think it is being caused by his chemo drugs, and are wondering if there's something else happening internally. He'll have an EEG to monitor his brain's activity, and spinal fluid removed from the location in his skull, where he had an ommaya reservoir port inserted (and then removed) during his first chemo treatment 7 years ago. I guess it would a more accurate draw of the fluid in his brain, rather than going through his spine.

We're worried, to say the least, that there could be more lymphoma in his body, and hoping (either way) that answers are discovered ASAP.

Please pray that this is nothing as serious as it sounds, and that we remain hopeful in the midst of the challenges!

Wobbling Around

Patrick has begun his fourth round of chemo, and it seems that he'll be doing this round inpatient at NIH. Over the past few weeks, we've noticed that he's become VERY wobbly on his feet. His legs will buckle under him, and he's lost some sensations in his fingertips. These issues grew much worse this past weekend, to the point where he could barely walk without the help of someone else to support him. So, NIH is evaluating him there 24/7, as he receives his chemo. It's sad to have him checked-in to the hospital again, especially since he's been doing SO well, and since his tumor is gone, but I also feel relieved that he won't be falling at the house, or squashing his chemo bag if he were to stumble. His oncologist is working with his neurologist to determine what exactly is going on. They are fairly certain that it is one of his chemo drugs that is causing some sort of neuropathy (Google that one if you're bored/curious!), as there is apparent nerve damage at his extremities (his hands and feet), and thus he doesn't feel his feet hitting the floor, or his hand grasping at something, etc. Apparently this can be a side effect to some of his chemo, but they're not sure which drug is causing it. They've reduced or eliminated some of his chemo this round, hoping that these strange side effects will diminish, but of course this is done at the risk of hampering with the battle against cancer, going on in his body. The doctors are fairly confident that his mobility will return completely, but it could take some time and therapy.
Please pray that the correct drug will be isolated and identified, and that Patrick's doctors will have wisdom to know what to do next. Please also pray that his coordination will return completely (and soon!) It's so hard to see him so gimpy, when he's mentally and emotionally so strong and alert these days. :(

VERY good news!

We are waiting in the pharmacy's waiting room at NIH, stocking up on the trunkload of meds that will accompany Patrick's 4th (out of 6) chemo cycle. (We're half-way done, folks...yay!) I wanted to send out a quick note to update you all on some good news we just received: Patrick had a PETscan and an MRI today, and BOTH showed NO tumor, NO unusual "enhancements"...and NO cancer! Patrick's oncologist was overjoyed at how Patrick has responded to the treatment, and confident that he would not have to undergo radiation at the end of the chemotherapy. We are relieved, to say the least, and thankful to God and the amazing medical team at NIH for his healing! (And thanks to you for your continual prayers, concern and emotional support!)

We still have three more rounds (9 weeks total) to go, so we're not out of the (chemo) woods yet, but we're so glad that his cancer is gone, and that these final rounds of treatment are mostly for preventative reasons.

So, overall, we have much to be thankful for!

(Long live the fanny pack!)

Round Three

Time flies when chemo is behind the wheel! Patrick finished his third chemo round on Tuesday of this week. We now have two weeks of potential ups and downs [read: fatigue, neutropenia (where his immune system is compromised, and he can easily catch all sorts of bugs), fatigue, digestion issues, some nausea, daily injections, have I mentioned fatigue??] before he begins again on November 11th. For anyone out there who may imagine that chemo is a walk in the park, show me the soft, freshly cut grass of Park Chemo. Seriously. Our two weeks "off" after our one week "on" (with chemo treatments) are filled with daily visits to NIH for blood-work, scans, or appointments at other physicians' offices. He's unable to drive for at least 6 months (due to the seizures he had following his brain biopsy), so we are "enjoying" quality, 24/7-togetherness time, as Ceci and I shuttle him around town.  After spending most of my days in the car circling the beltway, fanagling Ceci through NIH security, and handling her oh-so-pleasant 2 year old moments, I'm exhausted by 4pm, and still have to stare down bath time, bedtime and our own dinner time. (Let's just say 4pm has now been dubbed "Julie's Vodka Tonic Break").

Overall, Patrick continues to handle the treatment remarkably well. He's much better at self-care than I am, so he embraces the frequent urge to nap or drink green tea whenever his body beckons. We continue to rejoice (with you!) over the good news of his recent scans. His doctors have decided to proceed with the remaining chemo cycles, in order to ensure that they get every last lingering cancer cell. So, he should have 3 more 3-week rounds following our current cycle. I believe we are slated to be through with this sometime in early January. (Happy New Year to us!) NIH will run scans throughout to check on the tumor's progress, but his doctors remain cautiously hopeful that the little bugger is gone. We feel very relieved that his tumor responded so quickly to the protocol, and thankful that radiation is mostly likely off the table.

His primary oncologist, Dr. Wilson, is adding some additional drugs to the protocol, in order to specifically cater the treatment to Patrick's unusual CNS Lymphoma. Besides adding a few new chemo meds to the ongoing "cocktails" (a cheeky name for something so toxic, eh?), he's added (rather ground-breaking) modulators, which are supposed to further breakdown the cancer cells so that they will better respond to the chemo. One of these drugs was used in the 40s or 50s to help pregnant women deal with their morning sickness, I believe. Apparently, it produced scores of disfigured children, and was then quickly taken off of the market. It is only just now being reintroduced alongside chemo treatments. The potential of severe birth defects remains, so Patrick has to sign a pile of papers each week, acknowledging that we understand the dangerous side-effects, and commit to actively using birth control. Before we were visited by the friendly Cancer Committee, we were hoping to get pregnant, and grow our little family. Baby #2 has now been put on the backburner, (as have many of our former dreams and plans) so that we can focus solely on Patrick's health. This is (understandably) hard for me/us, and yet I continue to trust that God has a good plan for us through and after all of this.

Just as the leaves change outside of our windows, I am reminded that life is made up of changing seasons, where the death of something leads to the new life of something else. We die to dreams and expectations of success, and await the rebirth of new, good (hopefully better) things.  In the midst of our challenges, Ceci is growing up and blossoming before our eyes. She's (SO!) tall now, and full of words, expressions, new realizations and emotions. Some of these are annoying/exhausting. Most of them are delightful. As a newly-minted two year old, she's able to tell you that "we take Dada to the ho(s)pital to get some hair". I know, it's not the greatest teaching moment of my life, but it's too funny to correct at this point. (If she's afraid of receiving medical care in the future, for fear of losing her hair, you know who to blame....) If she believes that dinner isn't made, but rather appears magically on one's front doorstep, we have many of you to blame! I haven't cooked a meal in two months, and somehow our fridge remains stocked full of meals ready to be enjoyed. I owe hundreds of thank-you notes, but want to (for now) say THANK YOU here to all of you who've driven 30 minutes out of DC to feed us. THANK YOU to those who have generously donated to Take-Out Taxi so that our cravings for Indian and Thai deliciousness can be fulfilled at the last minute. THANK YOU to those who have mailed us restaurant or grocery store gift cards. THANK YOU to those who have offered/provided us play-dates, "mansits" and rides to NIH.  I really hope that someday I can give back to each of you with at least a measure of the kindness you have shown us. We are daily amazed at and grateful for your prayers, love and generosity for us in this time. We are blessed beyond measure to have you in our life, and thank God for your abiding friendship and love.

Well, Patrick and Ceci just stepped outside to go on a "bear hunt" of sorts. (They're guaranteed to find some deer in the gorgeous woods of Great Falls, but hopefully we'll be spared a trip to the ER, due to nasty bear claw encounters.) I suppose it's time for me to make dinner. Oh wait, it's already made. (Thanks to one of you.) 

Well, then, bonsoir, for now.

Good News!

We just heard from Patrick's oncologist, who was able to read his MRI scans from last Thursday, that, according to the scans, the "area of enhancement" (ie: the cancer) no longer shows up on his scans! We're kind of in shock, not wanting to get our hopes up too quickly, but according to the scan, the cancer is gone. Yay! (Okay, let's be honest, it's a BIG YAY!)

He is going to go through one more round of chemo, beginning this Friday, and then there will be another round of tests (a Petscan and MRI) on Thursday, November 10th. At that point, his medical team will assess what to do next. They may say he's "good to go" and that no more treatment is necessary, or they'll have him do a couple more rounds of chemo to make sure the cancer cells are all gone. We don't think radiation is still on the table, but we'll know for sure on the 10th.

Thank you for your continual prayers and support! The large multitude of prayers from around the world on Patrick's behalf are (obviously) being heard and answered!

Please continue to pray that this 3-week chemo cycle will annihilate any remaining cancer cells and that the scans on 11/10 will clearly indicate that he is cancer free!

Feeling (a bit more) hopeful,
Julie

A very quick update & request for prayer

Patrick is scheduled to get an MRI tomorrow (Thursday the 13th) at 12:15pm. His NIH medical team is re-thinking his treatment plan, and hoping to avoid radiation if at all possible. If the MRI reveals that his tumor is either a) gone, b) shrinking or c) responding well to the chemo protocol, they may adjust the plan by either avoiding radiation altogether, limiting the rounds of chemo or adding additional chemos to the mix. If it's not shrinking, or if it's getting bigger, they'd likely stick with the current plan (4 more 3-week rounds of chemo and five weeks of radiation).

Please pray that the tumor is shrinking, and that he can avoid getting his brain radiated! Apparently, once it's been radiated, it can't be repeated. So, if his cancer were to return, once he's received radiation, there would be nothing that could be done to help/heal it. If we don't do radiation this time, it would always be there as a treatment option, should his cancer return a 3rd time.

Sorry for all of the technicalities.....but we wanted to send on this bit of news, for those checking in regularly. We'll post as soon as we have the results!

Round Deux

I'm not feeling very reflective or verbose today, but I wanted to send along a quick update, for those of you keeping up with our blog. We've had (much to our surprise) over 4,300 hits in the past month (!), so thanks for reading and following along with us! Knowing we are surrounded and supported by such a "great cloud of witnesses" makes this journey feel far less lonesome...

We're just about to begin Operation Fight Brain Cancer: Chemo Round 2. Patrick's at NIH getting his pic line inserted this morning, and will begin his week of chemo tomorrow. Since I last wrote, we "successfully" moved out of our house in Del Ray, and into our new place in Great Falls, VA. It's strangely a wee bit freeing to not have to worry about 3/4 of our belongings that are now hiding out in Pod Land. With less stuff to manage or clean, I can hopefully better concentrate on getting Patrick healthy and keeping Cecilia happy. We're feeling much more settled now, and ready to begin Round 2.

Patrick's hair fell out this week. He was pretty devastated, but is looking pretty fine (if you ask me) with his new buzz cut and collection of hats. I'll work on posting some recent photos, including MRI scans of his tumor (past and present), for those that are interested.

Also, Ali Winter has put together a care calendar, which has been a great way for folks to sign up/learn about tangible needs we may have (whether or not we're aware of them!), without having to interface with me about them. (I'm having a hard time keeping track of details or responding in a timely way to emails/fb messages offering help). So, if you want to bring a meal, or hang out with an adorable (almost!) 2 year old, or drive PK to NIH for a chemo appointment, sign up there. (Hopefully I can figure out how to create a tab for it on the blog, if not, I'll post a link to the website.)

We have no cell phone reception at our new place in Great Falls, so email or call us at the below land line number, should you need to reach us. We're working on getting our own land line put in, and I will send that number along, once I have that info. Others have asked for our new mailing address, so I'm including that below as well.

Blessings and peace to each of you this day,
Julie

Patrick, Julie and Cecilia Kelly
c/o Steve and Nancy Skancke
833 Nethercliffe Hall Road
Great Falls, VA 22066
703.759.4927 (temporary landline)
919.402.7264 (patrick's cell)
919.402.7244 (julie's cell)

"Best Wishes"

We've been told all along that the second week of Patrick's 3-week treatment cycle would be the hardest of them all. And it seems that the proverbial "they" weren't lying. It's a doozy, I tell you. Patrick's steroid-induced energy, optimism, border-line mania of last week crested and crashed into waves of fatigue, mood-swings, irritation, indigestion, constipation, flu-like aches, and just about any other potential harrowing "side-effect" one might read about on a prescription label. The poor guy is a trooper, though, and we're holding our breath that the 3rd and final week will be a wee bit more "normal", before he begins the chemo cycle yet again. 

Somewhat foolishly, we made this hard week even harder by deciding it was the "best" time to move. So, our house is officially no longer a home. Labeled boxes are stacked where framed pictures once hung. Piles of bubble wrap are hanging out in my empty fruit bowl. Moving is always hard. Moving with a chatty toddler is doubly hard. Moving with a chatty toddler and a husband with brain cancer is especially hard. (And moving three times in one year is just plain insane.) We moved Patrick over to our new place in Great Falls this week, since the ensuing chaos was getting too much for him. I'll join him later this week, once everything is packed up in our Alexandria house. The Pod arrives Thursday night, and the movers come Friday morning. So long cherished belongings - I'll see you in a few/many (?) months, when I unpack you into a house, somewhere tbd. By then, Patrick will be done with his treatments. By then I hope he'll have a clean bill of health. By then, I hope our life will make sense again: because right now, frankly, it makes no sense at all.

Friends from near and far have been absolutely amazing through all of this. Kristin Lane Mack flew in from Chicago for 24 hours to listen to me cry and ramble, and to cheer me up in the special way only she can. Dear "old" DC friends took me out to dinner, former colleagues of Patrick's wrapped up all of our art last night, while others took a few loads of our stuff over to the new place. Kate Berman packed up my spices and seminary books. Others brought meals, cut our grass, played with Ceci, and sent tear-inducing reminders on facebook that we.are.not.alone. We feel overwhelmingly blessed and grateful for all of your prayers, generosity and support. I hate hate hate that Patrick has brain cancer. But in the midst of that hate, I am seeing God's love poured out a-fresh from each of you. So, thank you.

During my seminary CPE training (Clinical Pastoral Education - i.e. hospital chaplaincy training) at Duke Univ. Hospital, we talked and read and thought a lot about how to craft a thoughtful, empathetic response to the dying patient in a hospital bed, and their mourning/fearful family members surrounding them. I often longed to offer promising hope that they would surely be fine in just a day or two (and some were). But more often than not, they wouldn't be, and we all knew it. Probably the most authentic answer to the problem of pain and the question of theodicy is something like "I know, this really stinks, I don't know why a loving, merciful God would allow something as awful as this to happen." And yet God still allows it to happen, and for some reason is allowing it to happen to us. I don't think God created cancer. I don't believe God would wish it on anyone. I do believe God grieves with us when we have cancer. I trust that God hates Patrick's brain cancer as much as I do. And I'm trying to trust in God to heal him from it, or at least give us a few more happy cancer-free years together....

I've had to recall the painful reality of Patrick's illness and the painful reality that is now our life to so many friends and strangers this week. (I'd really rather pretend that I'm packing up and moving us onward and upward into some new, fabulously cute home of our own.) Instead, when I call our utility companies, and request a stop of service at the end of the month...they always inquire as to why we're moving, and why they're losing my patronage. (I want to say: Does it really matter!?) There's really not an easy or gentile way of saying "My husband has brain cancer", even to a stranger. But I've had to say it, over and over and over again...and each time it becomes more real to me. "Best wishes" they seem to all flatly say. When potential renters walk through our house, and ask why we're moving out, and brain cancer is my answer, I'm greeted with the (now) redundant "....oh, best wishes". Best wishes on your new job or new orchid plant, but not on our "new" life! (But, thanks for the thought.)

(How should one respond to such sudden, sad news? How should I respond to the daily reminder of that news? How does Patrick respond to the tumor hanging out in his brain? How will Cecilia respond when she remembers her early years in DC?)  Perhaps I'll learn to respond with a grateful heart and steadfast faith in a merciful, loving, grieving God, who hates this cancer as much as I do, and who promises never to glibly say "best wishes", before moving into the next room.

pk stylin': fanny pack edition

From Ali Winter:

Here is a picture of Patrick, our super-strong, superman, cancer-fighting hero, out for a stroll with his fanny pack, ensuring there is civility and harmony in the neighborhood. And what is in that fanny pack, you ask? Why, it is full of a special form of life-saving, yet still toxic, kryptonite chemo.

We love you SuperPatrick!!

1st week of chemo...

Patrick began his first week of chemo on Saturday. It's a five day treatment, so he'll finish on Wednesday. We take him up to NIH for a rather short period of time each day to change his chemo bag, which he wears oh-so-stylishly on him at all time in a fanny-pack. (It takes a real man to wear one.) So far he is tolerating the chemo fairly well. He has to take a high dose of steroids (I believe to shrink the tumor and it's surrounding inflammation (?)), so he's all hyped up (literally) and feeling great. According to the protocol's time-line, he's expected to crash on Wednesday, so we're looking forward to that. For the first time in our relationship he functions on less sleep than I do, and talks my ear off (and the ears of anyone he runs into!) It's so strange to see him so strong and vibrant, while knowing there's a tumor in his brain, poison in his fanny-pack, and many hard days and nights ahead.

Thank you for praying, leaving various messages of encouragement, and offering your generous help. We're completely overwhelmed with the love of so many, and very thankful that we're not in this alone. So many wonderful things are happening, in the midst of this awful beast called cancer, and with each blessing, we are reminded that God is indeed good, even when cancer is so intrinsically evil.

Steve and Nancy Skancke, friends of ours from our days at The Falls Church, have invited us (and our two cats!) to live with them in their lovely Great Falls home. They have a roomy 2 bedroom basement apartment that will be just perfect for us. It's much closer to NIH, so our daily commute there and back will be cut at least in half. We're selling Patrick's car to his mom (since she needs one, and he's not allowed to drive for at least 6 mos with his recent seizures), packing our stuff into a Pod (thanks to friends who have offered to pay for our move and storage fees!), and downsizing our life for a bit, as we concentrate on Patrick's care. Others are providing meals, care for Cecilia, rides to NIH, help with packing, cleaning, and advice with all of the required (and rather confusing) HR paperwork. Our landlord is allowing us to move out of our house without any hassle, so we are thankful and very relieved at the ease of all of this, despite the internal complexity going on in Patrick's body!

So, thank you, thank you, thank you, for your generous care. We're learning to see God's love for us and protection over us each day through your prayers, gifts and love.

With hope, (and a new appreciation for fanny-packers),
Julie

Blogging about this "Adventure"

I've always wanted to blog. I love to write, but I REALLY enjoy my privacy, so writing my personal thoughts and feelings for the "whole" world to read, feels a tad uncomfortable, to say the least. But because you care, and because you like us, because you're faithfully praying for us, and, frankly, because Patrick has cancer, I've decided to blog about this. It seems a fitting way to share with you updates, photos, and prayer requests, while not overloading my email inbox. Thanks to one of JoAnn (Patrick's sister)'s bridesmaids, Gayleen, who is ultra-fabulous and ultra-with-it, we have a blog all set up for this. (Thanks Gayleen!) She's inserted the emails that have led up to this point, and share with you our initial news and updates about Patrick's diagnosis. And from here on out, one of us will try to keep you informed of what's ahead, how he's feeling, etc.

She also thought folks might like to learn of tangible ways to help us, and prayer is our #1 need right now, so we'll periodically update things to pray for, if you're the praying kind. Others have indicated that they'd like to contribute to our various needs, so she's set-up a paypal account to make that easy for you. Please, please, please don't feel obligated to do this at all. I'm mortified that it's even an option! But, I also realize that with his 50% cut in salary (he'll be on disability), and the fact that I'm at home caring for Cecilia and now him, it's going to be REALLY tough to stay a-float in DC. We're trusting that God will provide for all our needs, while at the same time figuring out ways to change our lifestyle (which will likely include moving into a smaller place) in order to make this feasible. Other fabulous friends are setting up some sort of calendar where you can sign up to bring meals, etc. Once that's established, I should be able to link it to this blog, should you want to do that. But, seriously, it's your prayers, friendship, and words of encouragement that we really need, so don't feel pressured to do give anything else!

Several folks have made mention to this journey ahead as an "adventure". I personally tend to look forward to adventures, but can't say I'm looking forward to this one (at all.) But, I hope and trust and pray that we'll not only survive it, but also thrive (somehow) through it. Thanks for being a part of it!

Patrick had his pic line inserted today, and will begin his first chemo treatment tomorrow morning at 8am. He's on his way back home, as we "speak"/write, and will spend the night here, before heading back up to NIH at the crack of dawn. He hasn't seen Cecilia in almost 2 weeks (!), so I'm really excited for them to reconnect before his treatments begin.

With much love and gratitude (and fear and trembling!),
Julie

Diagnosis for Patrick

Hello again -

I just wanted to send you all a (not-so) quick update on Patrick's situation. Thank you to all who have called or emailed to check-in on us. Hopefully this will answer some of your questions, but I also hope to get back to each of you personally soon! Thanks also for your prayers, words of encouragement and helping hands. It's been overwhelming how much love and support we've seen and felt over the past two (very full!) weeks.

So, the results have come back that Patrick does in fact have a return of CNS Lymphoma. The doctors are not sure if there was a remaining cell from his first cancer treatment that lingered and then recently grew and became a new tumor, or if this is something new altogether. We may or may not find that out over the next few weeks, as further cytology reports come in. But it is cancer, and NIH has agreed to treat him. That is a BIG deal, as we will have the continuity of care with his former oncologists and their staff. Since NIH uses his treatment plan for their own research, we won't have to use insurance or pay a penny for any of it. Hopefully whatever they find as they study and treat Patrick's case will help heal many more cancer patients in the future!

We received the outlined protocol today and as looming and difficult as it seems, it appears to be a bit more manageable than his last round of chemo. He will receive outpatient care this time, which is very different from his regiment 7 years ago, where he practically lived at the hospital. He'll be home every night with Cecilia and me, which will be a great help as we try to maintain some sort of balance and continuity in our family for her sake (and ours!). He'll begin this Friday, and will have treatment for 5 days straight (we go in each day for a few hours of chemo) and then he'll have 15 days "off". This will cycle 6 times and last about 18 weeks. After that, he'll have 5 weeks of radiation. Radiation is new altogether for him, and although we realize it's part of the best solution for his total healing, it may offer a harder/longer road to recovery.

For those of you who pray, please pray for the following:
--that radiation will not be damaging to his cognitive abilities.
--that cancer will not return a third time (it would then likely be untreatable)
--that the chemo would be effective (and not as nausea-inducing as last time!)
--that we'd be able to survive in DC on his reduced disability salary. (We're expecting we'll have to move into someplace smaller/less expensive, until he's able to bounce back up to his full salary after treatment. This will be our 3rd move in one year!)
--that our family will weather this storm, and draw closer to one another and God through it!

If you don't have our phone numbers, message me, and I'll be sure to get them to you. I know Patrick would love to hear from you!

For those who are local, and who want to visit, please do! It seems to really rally Patrick's spirits, and keeps him feeling connected to the rest of the world. Just check-in with me to see where he's at that day/week. We're not sure how he'll feel through the various cycles of treatment, so please don't be offended if we say it's not the best time to visit!

Also, feel free to forward this to anyone who may be interested in learning more or praying for Patrick.

Thanks again!
Julie

E-mail from Julie

Hello all,

 

Thanks for the many kind messages, prayers and offers of help. They encourage us, and bring forth lots of tears as we face this new challenge in our life! We're certainly thankful we're not in it alone! (If this does turn out to be what we assume it will be...we'll start some sort of blog or caringbridge website to communicate news/updates. For now, I'll try to keep you up-to-date via email or facebook postings.) For those who have called, we'll work on getting back to you, when we have for info or strength to chat. (But thanks for calling!)

 

So, there's a bit of news to share, but we're still waiting to hear more news re: the diagnosis, which will likely come Tuesday or Wednesday of next week. But, for now, this is what I know:

 

Patrick's biopsy went well this morning...there were, thankfully, no complications. He's having some headaches and dizziness now, when he moves his head, but that is to be expected after having had a drill enter one's brain, no? The neurosurgeon, who performed the surgery, said from first glance, the cells extracted from the "enhanced area" appear (to him) to be lymphocytes (cancerous). We're waiting for final confirmation of that, which will also tell whether it is the same cancer that he had before, or something different. The right protocol would then be matched to his needs accordingly. We're not 100% sure it is cancer, although they are fairly certain that is.

 

We'll receive word from them next week (hopefully), along with whether or not they'll be able to take on Patrick's care here. So far they are proceeding as if they will, but that decision will need to be made by them before chemo and radiation begin.

 

So that's the news so far. I'll let you know when there's a clear diagnosis and plan/place for his care. Patrick's sister, JoAnn, is getting married this weekend in Seattle, but unfortunately PK won't be able to join us for that, given the risks of flying, being in a new place w/o known medical care, etc. So that's an equally hard blow for the family in the midst of this.

 

Thanks, again, for all of your love and prayers!

 

Gratefully,

Patrick, Julie and Ceci (who is completely oblivious to all of this, and immensely enjoying time with her Marmie, my mom!)

First E-mail from Patrick

Hello friends and family, near and far:

It’s so hard to write this email, but I’m desperate for your prayers… Many of you may have already heard of this via Julie's facebook postings, but for those who haven't, I wanted to write you myself. So, unfortunately it looks like I may be facing another bout of brain cancer. As many of you know, I battled Primary Central Nervous System Lymphoma (PCNSL) in 2004-5, and was treated with an experiential chemo protocol at the National Institutes of Health (NIH), in Bethesda, MD. I return every year to NIH for blood work and an MRI. For the last seven years, all of my scans have been clear. We were surprised last Thursday to hear that there was an abnormality on this year’s scan, and have proceeded with a variety of tests and further scans to get more info as to what this is, and what sort of treatment will work best.  So far, I am being treated at NIH, however, they have had budget cuts, and may not be able to take me on as a research patient again. We really hope they will, as I am accustomed to the doctors, staff and procedures here…plus its top-notch care (and free!). 

We will find out more tomorrow, after my 7am brain biopsy. Currently, my doctors assume that I will need both chemo and radiation, which is not what I wanted to hear, as it is an even more rigorous treatment plan! I am trying to rally strength for this fight, and believe that I am up for the task (sometimes), if this is a challenge God will have me face. I am hopeful that He will, again, carry me through the darkest of times, along with the support of my friends and family.  I am so glad that this time around I’m not single: I have a beautiful and loving wife and delightful (almost 2 year old!) daughter: this will of course raise the stakes dramatically. 

Will you join us in praying? This could be a long, hard journey… Once again I will hold on to this encouraging passage – Isaiah 40:27-31.

Things that you can pray for:

·         That I tolerate the treatment

·         That no lasting harm is done to my brain (during the biopsy or treatment)

·         That we don’t suffer financially from being on disability

·         That my wife and daughter are supported through this time

·         That NIH will take us on again!

Things that you can do:

·         Pray for me and my family

·         Come visit!!

·         Call (for now, you can reach me on Julie’s cell)

With love,

Patrick, Julie and Cecilia