Tuesday, July 26, 2011

True Friendship

I wrote this post in pieces during the time we were in the hospital. I never had enough time to finish it. Words cannot adequately express all of the love that has been surrounding us the entire time James was sick. These words are still true today, and I am so sorry that I have taken so long to put this up!


I have been scouring the internet, searching for a quote that would define the absolute true friendship that we have experienced over the last 3 weeks (EDITED: LAST 5, 6 WEEKS NOW). I have to be honest, none of the ones I have found have come close to explaining the blessing of friendship that has been bestowed upon us. I wish I had words to describe it. Although I really don't, I want to express to you all how incredibly, incredibly meaningful our family and friends have been.

For those of you who are always wondering how to help out someone in a similar situation- as I always am, because I typically have no clue- I thought that my friend's actions could serve as a sort of how to. A how-to lift up, encourage, bless, comfort, refresh and console a family in their greatest struggle primer.

When James was sick at home, and we thought it was only a bug, my friends from a playgroup continually stopped by bringing coffee, pedialyte, balloons, offering to get prescriptions, and just generally being the most caring human beings you could ever see. I am so lucky to count these 3 wonderful ladies as my friends. I know you guys will hate this- but Jean E., Toya, and Katie I am so grateful that you are my friends! We typically get together every week with our combined 5 kids and do something together. No matter what we do- we seem to have 2 requirements. We have a great time, and whatever we do, we do it for free!

Before we were admitted to the hospital, both Matthew and I's mothers were on their way to Dallas. They both had been trying to come earlier to help take care of James, but I had told them I could handle a sick baby. Clearly in retrospect I could have used the help! But they both made it to Dallas within hours of being admitted and slept in the PICU waiting room the first night just in case we needed something immediately.

Within 20 hours of being admitted to the hospital, several of my friends had made snack and care baskets for us. What a huge blessing they were! They put everything imaginable in these baskets. Everything from snacks and gatorades, magazines, shampoo, conditioner, toiletries (even hair ties!), fresh fruit, flip flops to wear in the shower, and other great products that I can't even remember now.

My friends went to my house to take care of my dogs. One of them, sweet Toya, took Winston and Maggie to her house for an extended week-long playdate so that our families could focus on being with us at the hospital. I think that she would still have the dogs if I hadn't insisted that she bring them back! My dogs are just plain rotten!

They also went to the house and got us clothes, including all the essential items. You become super close to someone when you explain to them which underwear you prefer! They coordinated outfits and even thought of the varying degree of coolness that exists in the hospital.

Our Sunday School rallied for us, and my dear friend Jean E. has been coordinating the troops ever since. She has been everything from my personal secretary to chef to chief listening agent. She is the personal liaison to our life! Our church, First United Methodist Dallas, has been our backbone. They are seriously the only reason why we are able to stand at this point. They have brought us dinner up to the hospital at least every other night. They would bring it every night if we would let them! I am so incredibly thankful to them. Sometimes when they come to bring dinner we get to sit and talk. Sometimes 8 million people are in the room and they understand we can't visit. I am so incredibly thankful for friends who are understanding! I can't imagine how frustrating it would be to drive all the way across town, bring dinner to some people, and then not even be able to visit.

More friends stocked our refrigerator and freezer when we thought we were going to be home for a week. They didn't want us to waste precious time at home with James, so they got everything we would need to be at home.

My sweet friends from college came and sat with me during James' craniotomy. They played with my hair and read People magazine to me. We looked up maxi dresses and debated which ones didn't look like mu-mu's. My friend Shelly, who lives in OKC, took off 2 days to work just to come sit with me at the hospital.

We've been sent flowers, gift cards, giant giraffes, little giraffes. There are stacks of cards and boxes at home that I haven't even touched yet.

And then more friends spent time knitting with me, bringing us dinner. They sat and held my hand in silence when I needed silence. They sat and held my hand and cried when I needed to cry.

(Written today below)
When you go through something like this you can either see the overwhelming despair that a death brings. Or you can see the hope, light, and goodness of people. And I have been shown just how incredibly kind the world is. I know there are some of you who might be cynical and sarcastic- and I can definitely be that. But the truth is that I have never felt so very loved in my entire life. Although I have been through the worst month of my life- I have been incredibly blessed by friends and family. I think I said this in the beginning, but I don't know how I got so lucky to be Jamesie's mom. And I really don't know how I got so lucky to have such an amazing support system, to be blessed to be around the most wonderful people I have ever met.

Thank you all for loving me- those who know me in real life, and those of you who only know me through this blog. Thank you for continuing to lift me up in prayer. Thank you for showing me what it means to be a true friend. Thank you for showing me what it means to be the Body of Christ at work. Because you all have truly been an inspiration to me about what selfless, loving friendship is.

Wednesday, July 20, 2011

Kara's words of remembrance

Because I couldn't post it right on my iPad and don't have a computer handy. Hers deserve their own post anyway.

A few weeks before James got sick, our Sunday school class talked about the parable of the paralyzed man. Do you all remember the paralyzed man whose friends lifted the man through the roof in order to see jesus? Mark 2 says that when Jesus saw their faith, meaning that of the paralytics friends, he was healed.

Dear friends, you have truly been the ones to lift and sustain us during this time. Our Sunday school class, foundations, has been a stunning example of the body of Christ. I can't tell you how you have not only fulfilled every material need for us, but you have provided spiritual support in ways that we couldn't even have asked for.

Because if you, we have been able to raise our eyes to Christ, but-only because you are holding us up.

Words cannot express our thanks and love for you. We are so grateful for every one of our prayers, thoughts, phone calls, emails, Facebook messages, blog comments, and visits.

Thank you for showing us how to truly love- it is through you that we have become better parents and show christs love to James.

Day Twenty Eight

Twenty eight days ago, James was alive and well, suffering a persistent summer bug. 4 weeks, less than one month. Today we buried him and celebrated his life in memorial. In that period, I have learned the word rhabdoid, brushed up on anatomy, and taken a crash course in neurosurgery. All in less than the time that it once took to get through half a quarter of law school. Holidays came and went, days of the week, once so important, faded into inconsequential 24 hour cycles as everything, everything became regulated by James' health. We ceased to note the passing of the weeks, even the season came as a surprise. I suppose today was meant to end that, that we gather before a hole in the ground and in a church with friends and family to say goodbye. The process is not nearly so neat however.

Today felt surreal. Early to the funeral home, a brief visitation with a body that was a poor imitation of my son but which nevertheless moved me to tears. We buried him with his Sophie giraffe, his giraffe blanket taking the place of the lining of the coffin. His giraffe rattle and pacifier, and finally the first and last book we read him- "On the Night You Were Born" with the simple message that was always so true for James, that you are the one and only ever special you. We read it to him in the hospital the night we met him, and we read it to him the morning of the day we said goodbye. The cemetery service was intimate and dignified, our family sharing freely about James and his enduring legacy in each of us while the minister ably returned him to the soil. Dust to dust, ashes to ashes.

The time between the burial service and the memorial service passed quickly and in a daze, as though we still could not quite believe the first had happened and that the second would follow. I wrote something to say at the service, and Kara slept. I wrote it out longhand, which forced transcription onto the ipad. My handwriting remains atrocious, no matter what the circumstance. I don't think either of us quite came to believe it was real until we were standing there, in a sanctuary filled with people gathered to mourn James, canvas pictures of him a few feet away from us.

The service itself captured what we wanted it to- a positive, affirming testament to James life and a celebration of the time we had with
him rather than a mourning the time we will not have. The ministers ably coached our words from this blog and the scripture into a coherent whole, a task complicated by the complete randomness with which we chose that scripture, verses and chapters drifting into our minds while we sat with the minister. Like so many other things, we committed quickly and without thinking- we had no time for anything else. Kara and I both spoke, Kara thanked everyone for their support, and I mumbled a few things about James, the only subject it seems I'm fit to speak on recently.

Afterwards, the foundations class hosted a terrific reception complete with no less than 100 dozen cookies, brownies, and treats I ate whose names I simply do not know. We were overwhelmed by the number of people who attended, and by the outpouring of love and support for us and for James. Thank all of you, though we'd never admit it, I think both of us worried we'd have an empty room. It was deeply gratifying to see so many people there, all of whom had lives that had not been operating at stop for four weeks, celebrate our son. We cannot thank the church and the class enough for putting all of this together for us. We are deeply humbled.

Afterwards we returned home. I have no idea what happens next.

Thank all of you for your continued prayers and support, and thank all of you who took the time to come. I keep expecting a punctuation mark on this journey, some signal that a chapter is closed and we should move in to the next. I have yet to find it. Below are the words Kara
and I spoke today.

My part:
We knew a lot about James. We knew his smile and the easy, always welcome sound of his
laughter. We knew of his preference for pears though never before mommy milk. We knew how effortlessly and continually joyful he was. Always eager to play, and eager to make new a acquaintances.

When taking his last photo shoot the photographer asked us if he had any favorite toys that might make him smile. We didn't really know what to say. He wasn't big on toys, he was big on you, big on interaction and play. No thing or object in particular moved him- he just wanted people. If they wanted to play with toys, fine. James just wanted to play with them. He liked to experience the unexpected from them- a silly face or the swish of a ponytail. Even in the hospital the surest way to calm him down was to take a walk with him in the stroller or on your shoulder.

With so many new things to take in he couldn't remember to be mad- and he wasn't really good at staying Mad anyway, it just wasn't his gift. He definitely didn't get that from me. There are many things though we will never know about James. We will never know his favorite movies, cars, pizza, color, if he was right handed, left handed, or simply ambidextrous. We lost James before he could tell us all of that- and I believe he would have let us know very loudly. He was anything but subtle.

Even though we will never know so much, even though so many hopes and dreams will never translate into memory, We can still know a lot about James. We can know the perfect love that surrounded him always. We can know how desperately we wanted him. We can know how blessed we were by him, our once and future angel. We can live each day with the same joy and the same boundless, eager love. We will miss James horribly and constantly. But we will not ever have to forget him. We can always know him, and visit from time to time that warm space he occupies in our hearts. We can wait in eager anticipation of the day when we will see him again and bask in the warmth of his smile. And we will, we always will.

Goodbye son, we love you. Always. We will see you soon.

Kara:

Tuesday, July 19, 2011

Day Twenty Seven

When I picked out a picture to pair with this post tonight, it occurred to me that eventually I will run out of pictures. Eventually I will have seen every picture of James, have used every image in one way or another. Because James is gone, a finite number of pictures exists. The supply is limited, and it cannot be replenished. I wonder what happens when we run out. I wonder what he would have looked like in a month. The shock of dark brown hair he was born with was slowly being replaced with new, blond hair, a concession to me as in every other way he was identical to his mother. His mother's nose, his mother's lips, and cheeks. Even his eyes were closer to her shade of blue than mine. He had my short, stubby legs though. Poor boy. I was always pleased he looked like Kara. The hope was he inherited her personality as well.

We took different paths today. I went passive and Kara went aggressive. I went asleep last night and slept for nearly eleven hours, and did not want to wake up. Kara slept not at all and attacked the day early and often, calling and setting up James' fund, attending to flowers (we're only doing flowers for the casket spray- no others), and dropping off James' clothes at the funeral home. We decided to bury him in a polo shirt, shorts, and puppy shoes. We didn't want somber clothes. James was never somber. Kara bought the polo last summer, when she was pregnant with James. It matches one of mine she also bought. We matched a lot- even on one of his last days, he wore a seersucker set of overalls that matched my seersucker shorts. We'll send him on his way with a few giraffes as well.

We met with the minister and finalized plans for the service. We're hoping it will be upbeat, a tribute to a boy who hated naps and loved people. Kara will wear a giraffe print dress, while I will wear a jungle themed tie with giraffes and an orange shirt. Although we mourn James, we feel overwhelmingly that his life was joyful in every way, and should be celebrated as such. To mourn seems inappropriate. Even with three IV and a brain tumor, James wasn't big on mourning. Too boring.

To prove humor still exists, Ferragamo actually makes a giraffe print tie. I called or had someone call everywhere in Texas that would have this tie. I could not find it. The closest thing was a jungle print tie that includes giraffes at Neiman's. The tie was $170. This will instantly make it the nicest tie I own. I've bought whole suits for less than that. Without thinking, we also bought an orange shirt there. We just picked a random one. It looked nice, but you know, a shirt is a shirt. When we checked out, we got a little sticker shock. The shirt was $500. Brioni. Chastened, we purchased a similar, cheaper Ralph Lauren shirt at Dillard's and returned the Brioni shirt. Which just goes to show you that my father and I really have no business shopping off the rack at Neiman's. We laughed.

Often, Kara and I pass each other in our grief process. She'll be mad when I'm barely speaking, and vice versa. The process lacks any kind of structure. It's more a free form disaster. The stages feel more like moods. That is not to say we do not believe James is healed- that he beat the tumor. We do. But we miss his presence, just his being there. We miss his smile and his silliness- how much he loved to fly, he was a bit of a thrill seeker. Throw him up in the air and he'd cackle all the way down. He got that from me. I always expected one day I'd try to take him skydiving and Kara would arrange to have the plane destroyed the night before. We miss the future we never knew.

Very early tomorrow, we will bury James with our family, in a place I'd never been before Sunday and where Kara hadn't been in years. We will put him to rest and say goodbye. That afternoon, we celebrate his life. After that, I have nothing more to "do." We'll see what happens then.

Your continued support and prayers are deeply gratifying. If you can, please consider making a donation to James' fund. We certainly are. I think we'd rather do that than buy a few Brioni shirts. Rhabdoid tumors are a relatively new type of tumor- until recently they were misdiagnosed as another type of brain tumor, and Doctors were simply confused why some patients diagnosed with the other type of tumor did so poorly in comparison to others. In the words of our oncologist, they are "orphans" when it comes to research funding. Gains are being made. We hope to contribute to that.

James Camden Sikes Fund




Kara and I are establishing a fund in James' name to direct resources towards research of rhabdoid tumors. In order to give to this fund, please click here. We would like to thank the Communities Foundation of Texas for helping us facilitate this goal. Donations are tax deductible. For those of you who would prefer to write checks, checks can be sent to:

Communities Foundation of Texas
James Camden Sikes Fund
5500 Caruth Haven Lane
Dallas, TX 75225.

Make checks payable to Communities Foundation of Texas, with James Camden Sikes in the designation line or memo line. We would appreciate gifts to this fund in lieu of flowers. James never cared much for flowers, but I do think he'd like to do something about rhabdoid tumors.

Thank all of you.

Monday, July 18, 2011

Grief


I physically cannot cry. I cried for about 5 minutes today, but that was all. And it does not make sense to me at all. How can I not cry? My baby is gone. How am I not sobbing?

I have a masters degree. I first learned about the 5 stages of grief in my high school sociology class with our basketball coach, coach Padek. We read Tuesdays with Morrie. I don't really remember discussing the book in class, but I do remember that grief has stages. (It was also in that class that we learned about the terrorist attacks on 9-11. I was a senior in high school. You can do the math). I then went to Baylor and learned more about the 5 stages of grief. And then I went to grad school at Baylor and learned that Kubler-Ross coined this model while working with terminally-ill patients in the late 1960's. The stages are fluid, and not every person experiences every stage. And just because you move from one stage, like denial, does not mean that you won't circle back to it again.

So yesterday I was in denial. Like Matthew said, we spent the whole day looking at cemeteries. Every time I looked in the back seat, I pretended like the car seat was still there. I rationalized it to myself that maybe James was with a relative and they needed the carseat. Why else would it not be in my car anymore? Which that doesn't even make sense. The only nights I ever spent away from James were the two nights that I was forced to go home when he was in the hospital. I had back surgery when James was 6 weeks old. I was supposed to spend the night in the hospital that night, but I just couldn't bring myself to be gone from him that long. I thought about it, and the largest chunk of time I ever spent away from him was 10 hours. And that was torture.

So now I have spent 55 hours away from my dear boy. (Edited: I lost an entire day when I first posted this. I seriously forgot it was Monday.) Nothing makes sense anymore. It doesn't make sense that he would be spending time with anyone else- I would have never let him! Those of you that know me in real life know how desperately I love James. He was my everything. Wherever I went, James went. If James couldn't go, I didn't go. Which is probably so incredibly unhealthy.

Then it hit me. The anger. It rushed in, all at once last night. And man, was I angry. I'm still angry tonight. How utterly unfair it all is. Why my sweet James? Out of all the babies in the world, why him? I'm angry he didn't have a chance to fight. I'm angry that the chemo wouldn't have worked. I'm angry that we only got 2 days at home. I'm angry that there is really only one place doing research on his type of tumor. I'm angry I have a hand mold kit sitting on my dining room table that I didn't even have a chance to do. I'm angry that the funeral home asked me his educational level today. I'm angry that he will never say "Momma". I'm angry he will never walk, talk, sing.

But the truth is, I'm angry because of all the things that I wanted to experience with him. It's so incredibly selfish. Because Jamesie didn't need any of those things. James only needed my love. He needed to feel safe and secure, which he did. The anger is from a selfish place. And not that I'm not justified in being angry- I think any good counselor will tell me that it's ok to be angry. And I own my anger.

And the Guilt sets in. I feel so guilty for being angry. I grieve for James. But I also grieve for those of you who have emailed me that have lost your sweet children. For those of you who lost babies in the middle of the night, without a chance to say one last "I love you". I grieve for those of you who lost children after long, hard battles with terrible diseases. I grieve for you who lost children who never took a breathe in this world. I grieve for those of you who desperately want your child and are unable to have them. Those of you with empty arms and no baby to hold.

So I feel guilty that I am complaining that I only had 8 beautiful months with James, when I know full well that there are so many of you who feel like 8 months is double, triple a lifetime.

Thank you all for your comments. I read them all. One of you sent me (emailed me? I can't remember) a quote that you had heard. It has meant so much to me today.

"Dear Lord, I would have loved to have held my baby on my lap and tell him about You,
but since I didn't get the chance,
would You please hold Him on your lap and tell him about me."

And I am so lucky that I got to hold James in my lap for 8 months. I always thought that at some point, I would be like that mother who made tapes for her daughter when she was dying. I would record every piece of advice, every subject, that I wanted James to know if I were to go before him. I never thought that he would go first. I wish I could have gone first. It must have been so scary for him to go first. And although I know he was not alone, I so very much wish he didn't have to go.

So we will celebrate James on Wednesday. We will celebrate his life, his legacy. We will celebrate the person that he was. I'm planning on wearing a giraffe print dress. I don't want people to wear black- I never dressed James in black one day in his life!

We are working on a charity to donate to in honor of James. I know we are so behind on this. In lieu of flowers, we would really prefer that people donate to a charity to honor James. (Which if you feel led to donate in honor of James somewhere, please do! I really feel like James' legacy is one of love. And if you feel like to honor James means volunteering your time or money at your local children's hospital, we would love for you to do that.)

Thank you all for letting this blog be an outlet for me. I hope that by being honest about my feelings, it will let someone else who is going through this that it's ok to feel all sorts of emotions. There is no one "right" way to grieve. And even though we take comfort that James is with Jesus, we still miss him so and grieve our loss. We miss him so very much.

Day Twenty Six




When Kara was pregnant with James, I wrote him everyday. Most days I curled up at the end of the day and wrote to him in a gmail document, snippets of of the day and of him. Some days I just jotted off notes on pieces of paper and added them in later. I told him what size fruit he was every week, what we were learning about him. I told him about all the fun things we were going to do together. We called him the bean before we knew him as James. We got the idea from his first ultrasound, when his beating heart surprised our Doctor. He was ahead of schedule- the boy was always precocious. I thought he was a girl. Kara knew better. When I wrote that, I wanted to give it to him one day, on a birthday or some other milestone. I wanted him to take it with him and know how we loved him totally from the time we first knew him, before we gave him a name or even knew what kind of name to give him. That I thought of him everyday.

Sometimes, I feel like I'm still writing that letter to him here, pausing each day to write. We just won't get a chance to talk about it, James and I. What I hope and pray is that I'll find another way to get that letter to him.

We are still doing. Doing this, doing that, doing anything but. We sprang awake this morning- late but eager- and began the day with a barrage of phone calls. Schedule time with the funeral home. Schedule a time at the cemetery. Call charities to explore options. We were in the car for the funeral home within an hour of waking up.

I wish I could say our funeral home experience went well. It did not. We arrived were handed off to a director in a back room. He fumbled immediately by spelling my name wrong on the death certificate, then following up by asking us what education level our eight month old son had attained. Why "less than eighth grade" wasn't simply checked is beyond me. We were not pleased. We couldn't look at caskets. They didn't have the baby ones there. We looked at a brochure, full of gingham monstrosities and designs which should never exist. He suggested a plastic one for $600. We were not amused. The whole catalog shouldn't exist. We selected the least offensive, poplar wood and not very baby. In our minds, James never seemed like just a baby. He was a whole person, with a personality and an identity apart from merely being an infant. He was James Camden Sikes, our son. He was not just our baby. After we selected, we were told we couldn't get it in until Thursday- after we'd scheduled James' service. The details were sketchy, we scrambled looking elsewhere, pitched a fit, I pulled the lawyer card and lo and behold, problem solved. We received a discount for our trouble. As if it mattered.

We then ventured out to the cemetery- the one in Denton where Kara has family. We'd liked it the most yesterday, and we felt good about it. The environment was totally different, in a much better way. No corporate offices (as one cemetery salesman told us, "This is the very best of our 600 cemeteries") just an old country woman behind a desk, with a map of spots. A fraction of the cost. We were shown a few spaces and finally chose a block of three by a newly planted tree where we could put a bench. We bought all three. James will take the middle spot. We'll follow. Once upon a time, we asked each other but never answered "Where would you want to be buried?" Now the answer is obvious and simple. "With James."

We went home and our families were over. We burned time sorting through decisions. Pallbearers. Clothes. Songs. Pictures. We did all of that and we managed not to deal with a lot. We ate. And here we are again, another day spent. We'll run out of decisions, plots to buy, and things to plan eventually. We'll have to deal with emptiness, with the lack of James. But not yet. Florist in the morning. Always something.

Thank all of you for your e-mails, comments and prayers. We are horrible at responding, but we read each one. We are truly grateful for the impact James has had on the world.

Sunday, July 17, 2011

Day Twenty Five

At some point, I have to stop calling these daily updates. At some point, daily is not my situation with James. I do not see him everyday. I do not hear him everyday. I do not play with him everyday. Right now, he's at a funeral home somewhere. I don't even know where. The hospice people suggested a funeral home and I took it. I didn't have time to comparison shop. I thought we'd had the upcoming week to plan, to mobilize, and to prepare. But as with everything on this journey, things simply happened much more quickly than we ever anticipated. The oncologist were ok with starting chemo on Monday. We didn't even make it through the weekend. I suppose I'll write this day as I did the first day. In many ways, the day James got sick and today each mark the beginning of new chapters in my life.

8:30 A.M.: I wake up. Somehow, I'm surprised. Part of me always expected God to take me up on my offer to trade places with James. I lay in the bed staring at the ceiling for an hour. The patterns are more intricate than I remembered. I wonder about James' view from his crib- always lying flat on his back. At least he always started that way.

9:30 AM: I shower. I cannot get the smell of yesterday off of me, no matter how hard I scrub. It's in the pores.

10:00 AM: I make my way out to the living room. One of James' toys, his singing puppy, randomly goes off. We always called it the zombie puppy. Part of me wants to throw it against the wall. The other part wants to fall on the floor and cry.

10:30 AM: Kara and I form a vague plan to go and look at cemeteries. Neither of our families are from Dallas, and we need a place to bury our son. More importantly, we need something to do other than sit in the house and wait.

11:00 AM: We visit the first cemetery. It is surrounded by strip clubs and warehouses. They haven't mowed, and the artificial pond in the front is dry and sad. I am not burying my son here.

11:20 AM: The second cemetery. No fence, and I have to drive past a schoolyard filled with children playing soccer to get there. It shouldn't make a bad first impression but it does. It's more quaint, but too random. Not here, either.

11:50: The third cemetery. Still no fence or shrubs, placed in the middle of a subdivision in the suburbs- two cemeteries actually, one an outgrowth from the original. There is a baby's grave we pass. She was two years old. That seems like lifetime to me.

12:20: The fourth cemetery. Kara's cousin, who drowned at two and a half, is buried there. Her aunt, uncle, and grandparents will be. It is in the country, near Denton. The road to it reminds us of the roads we lived on in Waco- winding and country, horses and imposing houses squatted on two acre tracts surrounding it. It is quiet and calm, peaceful. It is, unlike so many others, a possibility. There is a babyland, just for babies. It's full. I cry just looking at the tiny monuments. We decide we want three plots, wherever we go. One for each of us.

1:45: We visit the Fifth Cemetery. The director/salesman wants to sell us a family plot for 200,000. At the very least, will we consider a flat, not upright, space for 9,950? There is a special on a 6-seater for 79,000. I want to throw him out of then back up over him on the tour.

2:30: Lunch with the family. Campisi's Dallas. I wonder if James would have liked Sicilian, Roman, or Neapolitan pizza. I have so many questions like that. I have no answers.

3:00: We meet with the minister to discuss James' service. They are immensely accommodating, as they have been throughout. We are truly blessed by their support- both during James illness and now. We discuss his service. I find it hard to participate meaningfully, trying to interject what I feel is appropriate, though I have no idea what that means.

4:00: The minister gave us the names of more cemeteries. We're off.

4:30: Cemetery six looks more like a park than anything else. A few benches here and there and garden signs- they all insist on calling them gardens, not graves- indicate that the dead reside here. I suppose it's an option.

5:00: A cemetery in uptown, old and mildly gothic. The kindly old man locking the gates informs us that plots will be given only to those with family already there, or those who can find two plot owners to vouch for them. What does it mean to vouch for a cemetery plot? I feel like I'm interviewing at some sort of bizarre coop board. The kindly old man feels bad for us. He gives us the name of someone to make it happen.

5:45: Cemetery number eight. It's like the combination of all of them- it's weird. Somewhere in the middle of them all. Which makes it not quite right for anything. The tour is a Buick LeSabre, just like the one my grandmother once drove. I wonder how she James, and my grandfather James are getting along.

6:30: Home again. I go to James' room and sit there for a long time. I have no idea what I am going to do here.

8:30: Dinner from Keller's. I should stop eating. I just need something to do.

And now I'm writing. I'm missing parts. I'm missing everything. I know James is fine now. He's healed, better, tossing balls at unsuspecting passerby and laughing when he gets a hit. I just miss the boy.

Thank all of you for your support. It has been tremendously affirming to see how James has touched the world. Your prayers are with us.

Saturday, July 16, 2011

Empty

Today was the absolute worst day of my life. Those of you who know me well know that I have have been through my share of bad days. But watching sweet James breathe his last breathe was the worst of the worst. I honestly believed until the very end that we were going to get our miracle for him.

I really hadn't considered that James might die until the MRI on Tuesday. When we found out that he had a rhabdoid tumor, I knew the percentages weren't on our side. But I knew that the odds were increasing, and that we had a very successful resection surgery. As Terrible as this was, I asked the doctors how many cases likes James' they treated a year. They said typically 2. I also asked how many they were currently treating. They said 0. In my head, i did the math. It wAs June. I Assumed that they had one other case this year and that child had not lived. I somehow in my head determined that James would be the 1 of 2 that made it. I know it's terrible to think that way, but I'm trying to be honest here.

We knew when we woke up this morning that today would be James' last day on earth. I don't want to dwell on the details- today was long and very different than what we were told would happen. Sweet baby was a fighter until the end, doing things on his own time. Just like he did coming into the world. He wouldn't have had it any other way.

So precious James met Jesus in my arms, while being told how very loved he is by his daddy and I. We told him that we were so sorry he had to be brave and go before us- even though we so desperately wish that we could show him the way. He was so very brave. We told him about all the people who were so excited to meet him there. We told him it was ok to go and join his angel friends. We told him how proud we were to be his parents, and how much we are going to miss him. Oh how I miss him. I know it's only been hours, but I miss him so much.

I want my baby back. My arms are empty. I'm a mommy without a baby. And what does that even mean? I know it's so selfish to want him here, but I would give anything to have him back. Just for a day. Just for a minute.

I take comfort in the fact that James is completely healed. Last night, the tumor was literally pressing out of our baby boys head. I know we haven't talked a lot about that, but it was making his head swell so much. It was literally trying to come out of the incisions that were left after his biopsy, craniotomy, ventriculostomy, and external drain site. Right after James went to be with Jesus, somehow the rumors were gone, the swelling had subsided, and James was made perfect again. I truly believe that God healed his physical body so that we would know his heavenly body had been healed as well.

I held him for a long time after. I knew that it would be the last time I got to hold my angel. And he is at peace now. For that I am so grateful. Matthew and I prayed and thanked God for blessing us with Jamesie for the last 8 months. Although we wanted him to stay, James had a calling so much higher than this earth.

That's not to say I'm not devastated. I feel like I don't even know what to do. And that's ok. I physically cannot even cry anymore tonight. I'm just numb. It's like I'm functioning on autopilot. But the whole world keeps spinning and my world stopped at 3:50 this afternoon.

I'm so thankful to you all for confirming to me that James' spirit lives on. His legacy is so widespread I cannot even fathom its depth. Thank you for walking beside us. Thank you for carrying us.

This poem speaks to me now, and to me, sums up how I remember my sweet Jamesie.

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

E. E. Cummings

Day Twenty Four




I am not ok. I don't even know what ok looks like anymore. I don't remember what that even means. I'm just here. The world keeps moving but I do not. I keep breathing but everything is wrong. Everything is lacking. I keep expecting him to roll back into view, or crawl out from around the cabinet. The house seems too empty, too still.

I know he's better now. I know he finally beat the tumor, finally found peace. I am thankful it did not last long, that he did not have to endure months of treatment doomed to failure, that his illness struck him so quickly it took him before it could dampen his spirit. That he died at peace and in comfort. I am glad he died in our arms, surrounded by our love. I am glad I had the chance to tell him that over and over and over again before the end. We told him it was ok to go. I believe it was ok for him to go. I believe he heard us. I believe he knew how completely he was loved. I am not worried about James. James is fine, fine in a way I've never been. My little boy doesn't need grief, he doesn't need anything. He had all the love he could get.

So James is fine but we are not. We are left here with empty arms and damaged hearts, shadows of the people we were a month ago. There is much to take comfort in, and I do and will take comfort in many things- the profound impact James had on so many people among them. His happiness. How glad I am we were at home. But they cannot replace the part of my soul the rests with him. They cannot smile, laugh, and play peek a boo. They cannot be James.

There is much to do and we will do it. But for now it all seems impossible, even the smallest tasks feel that way. Everything is colored all wrong, everything is off center. The axis around which it all revolves is broken, ruined. I am trying, trying to keep moving. I suppose I will find a way. James did.

Thank all of you for everything, please keep us in your thoughts and prayers. Many of you have expressed a desire to give to charity on James' behalf, a desire we share. We will distribute information as soon as possible.

Jamesie Beat the Tumor

At 3:50 P.M. Jamesie beat the tumor. We had our angel for eight months. That's a long time to spend with an angel.

Friday, July 15, 2011

Day Twenty Three





Today James had his birthday party. He is 37 weeks old. As you can see the theme is appropriately giraffe. Jamesie the Giraffe demanded it. The party came together quickly. Long ago, i'd thought as James' birthday would fall on a Saturday, I'd do a tailgate themed party and watch the game. I wanted to show him all the different positions he could play, and encourage his athleticism. He gets that from his mother- I am aggressively uncoordinated. James never suffered from that, even as a two week old baby he rolled over, refusing to sleep on his back. We were so scared of SIDS and him somehow suffocating. That seems so silly now.

We had a cake from society bakery- a vanilla on vanilla cake with his name and a wonderful giraffe on it. Every time before now when I've called there to get a cake I've been told to wait a week. Today I got one the next day- sometimes, things do break James' way. The cake came out better than I expected, and was delicious on top of that.


Giraffe everything. Even a five and a half foot tall giraffe in the corner. His Uncle Tony cooked up squash and asparagus, while his Papa Jim and Uncle Patrick grilled steaks and chicken. Uncle Matt supervised and nursed a beer. James even tried some of his cake, washing it down with some mommy milk. He can barely swallow now, but he managed to get the icing down. Like so many things I once made a priority as a parent, offering vegetables before sweets is simply no longer on my radar.

When the day started, I did not believe we would have a party. James woke us up at 3:00 AM seizing, thrashing in his Moses basket in the slow, rhythmic writhing we've come to associate with his seizures. We waited five minutes as instructed and gave him Ativan. No effect. We waited another five minutes and gave another dose. Nothing. We called the hospice and gave another. The triage nurse returned our call and said the on-call nurse was on the way, and told us to give another dose of Ativan. We did. Nothing changed. The on-call nurse said she was 30 minutes away 30 minutes after we first called.

Panic ensued. We called Kara's Dad, a doctor, and started giving James phenobarbitol, his other seizure medication. He kept seizing, legs bicycling slowly- he barely has the energy to even seize properly anymore. Finally, the hospice nurse arrived. I'll be honest, if I didn't think my son was dying I would have throttled the woman. Used to working with adult patients, she seemed to have no idea what to do with us. Wide-eyed and confused, she kept saying over and over "I'm so sorry your son has a brain tumor." "If there's one thing I do not need from my medical professionals, it's cancer eyes. Especially when they think he's dying. If you can't help, get the hell out of my way. She literally asked "Do you think he's seizing because of the tumor?" Why yes, yes I do. She fumbled with the name of our oncologist. She couldn't get the spelling right to call. She finally managed to get a hold of the on-call oncology doctor. By this time I'd ordered her out of the room and we'd told Kara's Dad to do the actual talking with the doctors.

If she displayed mere incompetence, our third year resident friend actually managed to make things worse. When we told him what we'd given James, he informed us that he would rush James to the PICU immediately because that much ativan and phenobarb would cause respiratory arrest. When informed that James' head was literally swelling because of the tumor, he said "Oh Jesus." So that didn't help much. Convinced we were losing him, we cradled him in our arms while he was still seizing, sang to him, and told him it was ok to go and that we loved him very much. I called my family and told them it was time and to come. I used the word respiratory arrest because it somehow sounded cleaner than dying. By this time, Kara's Dad had our usual pediatrician on the phone and she told us that James was not dying, and we could give him more phenobarb. So we did. It didn't all at once- but James breathed fine. Exhausted, we fell asleep. When we woke up, James was still alive. So were we. Concerned phone calls from our oncologist (who I think have probably given that poor resident quite a tongue-lashing) led to a new plan for James' seizures and pain medication, as it's very possible at this point his movement is a pain response, and as he can no longer cry, something we need to address in a different way. Together, the changes- the medications delivered to our home by our new friends from hospice- appear to have worked. James is at peace once more. The experience shook me. Having an academic understanding of the fact that your son is at home to be at peace is one thing. It is quite another to hold him in your arms and believe he will be leaving you soon.

After napping throughout the day after our adventure overnight, our families reconvened at our house and we hosted James' party. Everything fell into place naturally, with all the people that love him surrounding him. We'd never planned to do this today, we just did it. Kara mentioned it a few hours before it happened, and in those hours we put it all together. We sang him happy birthday- the boy deserves to hear it at least once, and sat around and talked. People took turns laying next to James and holding his hand. I believe that he knows how much we love him, and that he enjoyed his party. Jamesie always liked a good party. The most important thing now is that James know how much we love him. When we first learned of his diagnosis, we committed to being positive about this experience. Although our plans have changed drastically since that day, we remain committed to that. I do not think James is well-served by a gathering of friends and family on death watch, mourning him even while he lays next to them, breathing and looking as beautiful as every. I think celebrating his life, celebrating the joy he brings into our life, is the better choice. And so I choose that.

That's not to say we don't break down- we do, often and about the strangest things. His firetruck in the corner- he used to love to honk the horn, he got a kick out of making it go over and over again. Reminiscing on a walk about when mommy was pregnant with him and could barely make it around the block last summer. A thousand small things, as our very identity is tied up in him. But we can't help him by doing that. We can only love him. And so we do.

I continue to be overwhelmed by the outpouring of support and love for James. Hearing about how his story has impacted people positively warms my heart. Please continue to pray for James, that he continue to be comfortable and at peace.

Thursday, July 14, 2011

Day Twenty Two


James is resting peacefully. The alarms complaining of his irregular heartbeat, his low pulse, and his respiratory rate are no more. He sleeps with Mommy and Daddy in the middle of the bed, our perfect little angel. He's upside down and on his side here- just the way he likes it.

Our first day home confirmed how absolutely right our decision was. James is visibly more at peace released from the shackles of his monitors and his IVs. The only IV that remains is the TPN drip which feeds him through his port, pumped discretely from a bag the size of a small purse. Kara and I change the batteries and reset it everyday. At the hospital before we got home, I worried so much about where we'd plug it in- I envisioned an IV pole with a three hole plug and just knew our fifty year old home with its two hole outlets would never work. It seems silly, but all of these little details hit me because I was so scared we wouldn't be able to take him home. The reality is much more manageable, a tiny pump and a single line. The hospice nurse said she's had some kids put it in their back pack or their purse. It still gives me chills when she uses the plural.

I wish I could say I knew peace. But the truth is much harder. The truth is I have no idea how to deal with what I am faced with, that I simply act because the circumstances demand it and no choice remains. Someone told me the other day they admired my courage. I am not courageous, I am terrified and stumbling through the motions of my life. I am listening to a hospice nurse explain how to provide my son with doses of ativan to break a seizure- but only if that seizure lasts more than five minutes. Otherwise we save the ativan. I am taking delivery of an oxygen machine to provide him with help breathing- he will need the help. I sign and date, placing the machine in the corner by a toy he'll never use again- and it's still singing at me. I still feel in complete shock about my reality- the dreamlike quality of everyday has not abated. To me courage requires a choice, a decision to overcome and move forward. I never made any choice- I never had a choice. James is the one with courage.

Yesterday Kara, James and I had to get our blood drawn as part of genetic testing to determine the cause of James' tumor, which may but probably is not inheritable. I cannot tolerate needles. I literally faint. As a boy during my various hospital admissions, I regularly required either general anesthesia or a team of seven nurses holding me down to get an IV. Mortified as ever, I very nearly did pass out. James took his blood draw with no complaint. He never complains, and when he could, he only stopped smiling for a few minutes. As always, I am humbled by him. It is a tremendous blessing to be his father.

This morning, our hospice nurse came again to provide guidance through our first full round of giving James his medications. She's from LA, and when she told me that it made perfect sense. She has a very calming, industrious earth mother presence. She appears as comfortable in our home as anywhere else, placing her laptop on the dresser while watching us give James his medicines on our bed, using the same tone she used in James' ICU room when she first met us. She's worked with babies with ATRT before. I envisioned a much grimmer scene somehow.

James himself appears much the same. He is not very responsive- as his brain continues to swell, he will become even less so. Yet my boy still loves the same things- though he cannot feed anymore, his highest level of activity comes when we syringe feed him Kara's milk. It soothing power remains. He hates laying on his back, insisting on wiggling until he finds his way to the side. And even now in his long rest he sleeps the same way, legs akimbo and his back arched, a gymnastic display that is comfortable only to him.

Our pediatrician told us yesterday that the oncologists had told her they had never seen in all of their practice a tumor as aggressive as James'. As the physician's assistant told me yesterday, even if we'd begun chemo the day after James' big surgery, the result would always have been the same. I take comfort in that.

Tonight we took James for a walk, pointing out all the things along the way we thought he'd like and talking about what a beautiful boy he is. I believe he can hear us, and I believe he knows how loved he is. Love was our first gift to him, and the only one that matters. None of the toys, the furniture, or the rest ever mattered. Only love. And that is the gift we will leave him with.

Thank all of you for the overwhelming support we have received from all of you. It means so much to us to know how much people love James and care for him. Knowing that he is working in the world means so much to us- we have always believed James is very special, and we are glad you all agree. Please keep us in your prayers, and pray that James continues to be at peace.

Home at Last

Home.

I don't think I have ever been so glad to be home, but at the same time, so incredibly sad. We got home last night around 7:00. One of my sweet friends picked up the dogs so that the house would be quiet. (You know you have amazing friends when one of them drops everything, picks up your 2 dogs to add to her one, has the most adorable 1-year old baby, and brings you dinner. Seriously, amazing.)

On the way home from the hospital, Matthew and I realized that it will be our last car ride with James. He had to come home in the Moses basket due to the way his car seat would put pressure on his neck/brain. In what world do I let my son ride in car without a car seat? I think Matthew actually drove slower home from Children's than he did the day we came home from Baylor with James. I said that we were driving home precious cargo- just like we were 8 months ago. I can't tell you how many times I have said that phrase now. Too many to count. Because we truly are carrying with us precious cargo.

We sang songs to him the whole way. I am so sure that he would have rather had silence or the radio because I'm pretty sure we sound like dying cows when we sing! Poor baby. But nonetheless, James didn't fuss a single bit. We took extra time to drive around the neighborhood a few times, reminiscing about walks we had been on and what we had seen on some of the streets.

When we arrived home, we had dinner waiting from sweet Toya and Terry, and Sprinkles cupcakes from Uncle Patrick and Aunt Vanessa that said "Sweet Baby James". It's funny what things you think about first when you realize the milestones you are going to miss. I realized sometime yesterday that we will never have a birthday party for James. Just a few weeks ago I was pinning on pinterest my inspiration for his first birthday party. Giraffes of course. My, how life changes in an instant. And so my Mother in law ordered James a Giraffe cake and we will celebrate James tomorrow instead.

And so James had a great night. The hospice nurse met us and went over all the pertinent details of James' care with us. He has a port that was put in while we were in the hospital- 2 weeks ago? I can't even remember at this point. All of his medicines will be given through his port and we have a portable pump that is constantly giving him TPN (nutrition). James nursed one time yesterday before we left the hospital. James had not nursed since Saturday. I think he must have had a seizure or something else, because as of Sunday he has acted like he didn't know how to nurse. I had been sobbing yesterday morning, thinking that he had given it up for good. Maybe James did it one last time for me. Or maybe he will surprise me and do it again! But either way I cherish the time yesterday to nurse him. Some of you may not understand that bond that is created when you breastfeed your baby. But can I please tell you that for me, it was the most special experience. (I know for various reasons people cannot breastfeed or choose not to. It's a personal decision and you have no judgment here. For me, it was a wonderful experience and I would encourage you if you are on the fence to try it.)

So James came home with 6 medications to be given in various intervals and that can/cannot be given together. I've learned about flushing the tube in order to make sure that no interactions exist. I learned how to give doses over a slow push. I know how many pushes of ativan to give him in case he has a seizure over what intervals of time.

James did have another seizure this afternoon. His seizures look different than a typical epileptic seizure that most people think of, so they are hard to classify. I was so scared. As the tumor grows, the possibility of more seizures increases. The sodium balance should keep most of them away, but it is a most likely fact that he will continue to have them.

We spent the day with family and friends. Most of the time James preferred to be lying on his side on the floor, so we laid on the floor next to him. We read books, sang songs, and even played with one of his balls. Matthew and I took him on a walk tonight (once it finally cooled down to like 90 degrees). James seemed to enjoy it, and we absolutely loved being able to do something normal with our sweet boy.

We are at peace with our decision to bring him home. When we talked to the doctors some more yesterday, they said the chemo would have only granted us 3-4 weeks more with James and he would have been in constant pain due to the drugs administered. It truly would have been selfish of us to ask him to do that for us. So we chose quality over quantity time.

Today has been a great day with James. That doesn't mean we don't cry- we definitely have our fair share of crying. We weep. We grieve the things that will never be. But we enjoy the time we have with our precious baby.

I think when you become a parent, you hope for two things for your children. The first is that your children know that they are loved. And James is so desperately loved. Not just by his family, but by so many people around the world. Our other hope is that James would find his calling in the world and live it out. My word, has he found his calling. James' impact on the world is far greater than mine.

So, what else can I ask for? I spent the day with the light of my life, and God gave me one more day with him. Glory to God, who blesses me beyond belief.

Thank you all for your heartfelt comments, emails, and texts. We are so grateful for your love of sweet James.

Jamesie's Photo Shoot

Today we received a link to the pictures from Jamesie's photo shoot last Thursday. As Thursday and Friday were some of the last days when James could still smile, we are incredibly grateful to Katie and her team for these pictures. They were worth the haircut and shave on my part, and we are so glad we had the chance to show off our boy again. James is beautiful and wonderful.

Wednesday, July 13, 2011

Day Twenty One

I am taking my son home today. I am taking him away from the wires, the needle pricks, and the constant pain he lives in. I am taking him home to the place he lived in and was loved in. Where Kara and I told our families we were expecting on Easter Day last year. I stood in front of the fireplace and told them, we gave each one a framed picture of his sonogram with a verse from Jeremiah printed on it "Before you were formed in the womb I knew you, before you were born I set you apart." And so it was.

Where James learned to crawl across the kitchen, always aiming for the dog bowls, eager to give their food a try. The entryway where his pack and play displaced completely our console table, becoming a new, more fashionable piece of furniture. The walls he tossed sweet potatoes onto while he still struggled with whether or not he liked solid foods. The chair in the corner I spent hours rocking him in, positioned just so you had good angle at the remote. I only ever used my fingers to change the channel- use the whole arm and James wakes up.

I am taking him home to his room, with its stencil/stickers ordered from Etsy, which apparently means Malaysia. It took us a good hour to figure out the directions. The T-shirt knit rug Kara and I bought at Buy Buy Baby, neutral so we could use it in his brothers and sisters rooms too. The rocker, also cream. We doubled up on coupons for that. The crib James sleeps in upside down, so he's never under the mobile- though that's the part of the crib where his piano sits, mounted on the side. He loves his piano. He always wanted to be moving, and before he could crawl he could flail, and he cackled when his feet made contact. The little boy's rocking chair that belonged to me and to my father before James, a frequent photo shoot accessory.

Home to thousands of memories, even in the short eight months he's called it that. James colonized the place within a week, and now it belongs more completely to him than it ever did Kara and I. His toys, his dogs- a constant source of play fighting entertainment, even his table, where he lords over us in his high chair. We call him Master Jamesie, for he is master of all that he surveys.

Above all I am taking him home to be with the people who love him. Kara and I have often asked how we could have been so lucky to call him our son. I have often felt he was more of a gift than I deserved. This is our chance to show him precisely how much we love him, to envelop him completely in that love and to repay the gift of his easy smile to us for so many months to him.

If I thought any chance whatsoever existed for my son, I would ask him to fight. He is a brave boy, and he has endured all that he was asked to bear with no complaint and a sublimity that defies reason and speaks to God's grace in him. If we asked him to, I believe he would fight. He would struggle, do battle against his tumor and all that was requested of him. But I will not put him through that struggle simply to watch him strive valiantly and ultimately to have us, medicine, and his body fail him. To watch him whither away in pain before he is taken from us. In the words of our neuro-oncologist today, this cannot be cured. Her voice is not alone. Tumors like James' do not have survivors, only sufferers. I do not want my boy to suffer more. I want him to know the perfect love that surrounds him.

And so I am taking him home to know that. As our oncologist speculates, the time left to James is measured in days and weeks, not months. We have come this far, and James has carried us. We will have to carry him the rest of the way.

Please respect our decision and support us. We are entering a new phase of our journey, and we will need still more support. Pray for us and James in the weeks to come, that we find peace, and do not know pain.

Tuesday, July 12, 2011

Sweet, Sweet James

As I write this, I'm sitting here weeping. My heart aches. I feel like my world is collapsing, and no matter what I do, nothing can stop it.


I was not prepared to hear that the tumor had spread. We have had a rough few days. James has been progressively worse. I knew that neurologically something had to be going on because of the large seizure. They even told us this morning that brain swelling was a possibility, and it was a cause that could not be treated. I knew that the swelling was an option, but I hoped that maybe something like some tumor regrowth in the pineal region (where his original tumor was) was the cause. Some regrowth we could take care of with chemo. Never did I imagine that the tumor would so aggressive in 2 weeks. No one else did either.


My sweet, sweet angel is lying in the ICU crib, heavily sedated. He has a tube down his throat. His eyes are unresponsive. He has a feeding tube and 4 different IVs are going into his port. His heart rate fluctuates any where between 80 and 200 bpm. He's not stable. The only thing that has finally leveled off is his sodium level, which is now in the normal range. Nothing has changed though, so it seems certain that the sodium level was actually an effect of the tumor, and not the underlying cause of the seizures and swelling.

I am broken. I can't imagine my world without James in it. I realized that I might actually spend more time with James in my womb than outside in the world. 40 weeks, 6 days in my belly. 36 weeks, 4 days on earth as of today. James has always been my miracle baby. For as long as I can remember, I would say to him, "How did Mommy get sooooo lucky that she got a James Camden?!" Jamesie would laugh and I would laugh, and we would "talk" about how the other babies couldn't possibly be as good as a Jamesie. I truly am the luckiest person in the world. Out of all the babies God could have given me, he gave me the most perfect baby in the world. He is the most precious gift, and more than I could have ever prayed for. I have said for the last 8 months that I had to have been doing something right to be so blessed to have James. And I am truly blessed.

Matthew and I were talking tonight, and I told him that I think that James must just be one of God's angels on loan to us. As you can see by the pictures, isn't he the most perfect angel? He came out of the womb so incredibly perfect, and has remained so ever since.


I am so, so blessed to be his Mommy. Even if he was only on loan to me for a little bit. But we do believe that God works miracles, and if He chooses to let us have James for just a bit longer, we will be forever grateful.


I don't know what we are going to decide in the morning. I am hoping that at some point tonight we have peace about the situation. I do know that I want peace for James. I want James to be able to have pain-free days and to be surrounded by those who love him more than anything. I wish so desperately that I could take his place. I would give anything to do so. But if I can't, then all I can ask for is peace for his body.


Please keep us in your prayers tonight and the days going forward. Please pray for a miracle. But I know that sometimes the miracle is in that God just couldn't stand to be away from precious James any longer. I know the feeling of longing he must have to be reunited with sweet James. Thank you so much for your continued thoughts and prayers. We cherish you.

Day Twenty

We spent most of the day angry. Yelling at doctors. Trying to impart our sense of urgency in them. Begging for tests, for answers. We yelled. We cried. We pulled all the strings we knew. And none of it matters.

The only thing that matters is the news. We got the MRI. James' tumor is back. All the way back. It's filled the space left from when we removed it, and spread like tendrils from a wildfire through his brain, coating the top of his brain, clustering around his brain stem. The images are vivid and terrifying. And it all happened in two weeks. Two weeks ago, James had a successful surgery. Today we learned in the time between that surgery and the date scheduled to begin his chemo, his tumor has not only returned to full strength but actually become worse.

Rhabdoids are extremely aggressive tumors. James' tumor exists in the most aggressive category of rhabdoid tumors. Our oncologist was genuinely surprised by how quickly this happened. You could see it in his eyes. This changes our landscape, and our world. We now have two options. The first is to take James home, to make him as comfortable as possible, and try to show him just how much we love him in the time we have left. For that, the timetable the doctors are talking about is expressed in days and weeks. Eventually the tumor will damage his brain stem sufficiently that he will simply stop breathing. The other option is to immediately begin chemotherapy- another surgery to remove the tumor would be pointless, as during James' recovery time the tumor would revive itself completely as it just has. Our oncologist expressed extreme skepticism about the usefulness of chemotherapy at this point- given the aggressiveness of the tumor, any gains would likely eventually be erased. Of the children he has treated with tumors similar to James', none have survived.

They asked us for a decision. We couldn't make one. We asked for the night to decide. It's the longest we can wait to begin chemo if we are going to do that- every hour, every day matters. On one hand, for James in his current condition chemo means chemo in the PICU, remaining on the ventilator, and getting sicker. Possibly sick enough to where when it becomes clear that the chemo isn't even buying us time- the most it could do- we won't be able to take him home. We'll lose him here. Home means we'll watch our son die in the room we decorated for him less than a year ago, in the convertible crib that never made it to the a toddler bed stage. There is no right decision. There is no wrong decision. We're beyond that duality.

We don't know what we're going to do. We feel like we're being forced to choose between making James suffer and giving up. I abhor both. We were prepared for a war, for a marathon of chemo and a devastating year of trying to make James better. But we never even got to fire the first shot. James is our perfect angel, he was born perfect in every way, and he remains perfect. Even now, with everything he's been through, his natural resilience remains. He holds on tight to your fingers. He's so far away from stable- so far away from three weeks ago or even Friday. His breathing remains in doubt. His heart rate is irregular.

Please don't tell us what to do. We don't need opinions, or second guesses. Please just pray for guidance and that we have clarity for our decision. Pray that it brings us peace, either way. Pray for James, that he not suffer, whichever course we choose. You all have walked this far with us and we thank you. We will certainly need all the support we can get moving forward.

Monday, July 11, 2011

Day Nineteen

Kara ably summed up the day. Returning to the PICU feels like we've come full circle. Our nurse is the same- we've stayed in the room next door before, and the one down the hall. Our favorite fellow is back with us- and we know the sex of the baby he's having in a few weeks. Any day now I suppose. It was three weeks two and a half weeks ago. We miss the in-room bathrooms from the floor but welcome the heated blankets (which we horde). We still have no idea what the future looks like.

James' sodium levels are improving. We finally got a chance to see his CT scan and the swelling which is concentrated in his brain stem region is obvious. This region coincides with where James had both his surgery and the location of his tumor, so we suspect that some correlation exists, though it may not be explained. Dark, empty spaces mark the ventricles on the scan. James is missing one- a sign that the brain has swelled into the space. This is likely attributed to the sodium deficiency, but the sodium deficiency itself remains unexplained. It's a common problem in brain tumor patients, but we take little comfort in that.

A direct correlation exists between the number of doctors you see and the level of concern about your case. Today we were shooting for the trifecta. Or whatever you call more than a trifecta. Quadfecta? The endocrinologist, with his merona tie (props for savings) flipped inside out our entire conversation and his hands tucked in his pockets, did resemble the neurologist. He also loved to pontificate on hormones, which must come in handy in his line of work. I'm glad, because as the day wore on, our 20 minute lecture in anti-diuretic hormone production and impact came in extremely handy. I even supplied the name for ADH for one of the oncologists at one point. He had a single groupie, the handshake and listen variety.

I am pleased that once neurology showed up they acted promptly. I am less pleased they showed up less than promptly. Although he said he'd heard of the seizure before he had not heard of James' lethargy, which concerned him much more. This is frustrating because it reinforces the feeling that you, the doctors, and the various specialties are playing a game of telephone in which your words, the residents words, and the nurses have to be filtered through several layers before they get to the specialty who needs to make the consult. When they do, key pieces, like lethargy, may be left out. The neurologist gained a fresh sense of urgency when he learned that but we had to get our intern to call him twice to tell him about it. Our intern's been very good to us, and a useful sounding board for our concerns, which have multiplied dramatically over the last 24 hours or so. She's an ally. Our neuro-oncology crash course took a detour through endocrinology, with a touch of nephrology for good measure.

James gets good care on the PICU, but he needs good care now. He's not stable enough for anything else. We're supposed to be starting chemo and James can't even stay on the floor. In addition to the complications of chemo, our move is made worse by the fact that so many of the creature comforts we acquired on the floor- from the air mattress to the less frigid thermostat, aren't options here.

James' appears to still be having seizures- little ones, lesser ones than the huge one last night. His pulse shoots up and he'll have apnea spells. It does seem to be getting better. We're hoping that it is just the sodium- because we can certainly fix that. I worry it's not. But I can't go there right now.

I am trying to stay positive. To locate the good. James grabbing my finger still. The CT scan not showing any spread of the tumor. I'm naturally a cynic- but ironically this process has made me much less cynical. I'm not sure I'd survive if I kept at that. Thank all of you for your support today- it was a long day, and we needed every bit.

SALT



Salt. Sodium. Over the last 24 hours, sodium has been an obsession in our hospital room.

Sodium controls everything right now. Because James' sodium levels are low (122 for you medical people out there), he can't get an MRI done today. In order to get an MRI, James has to be sedated. Otherwise, his head would not stay still and it would defeat the purpose of trying to get the pictures of his brain. The anesthesiologist doesn't feel comfortable giving him general anesthesia until his sodium levels are in a more normal range.

James also cannot start chemo until his sodium levels begin to be in a more normal range also. Because of the drugs he will get his first round of chemo, he will need maintenance fluids running through his port at a high rate. When fluids go through your body that quickly, they can strip your body of sodium. Therefore, his sodium needs to be higher in order to begin.

Last night before James' seizure, I was talking to my Dad about how lethargic James had been over the last 24 hours. (My dad is a dermatologist which has been extremely helpful in understanding the medical terminology that is so very confusing!). He suggested that they take some blood and do a glucose test to make sure that James wasn't having some sort of diabetic shock due to the fact that he really has not substantially eaten anything in a week. When I went to ask the nurse about doing a glucose test, we discovered that no labs (blood work) had been run on James since the day we were last admitted, which was July 4th. It was July 10th. About 30 minutes before his seizure, blood was drawn. I am so thankful that he suggested this. By the time we got the blood work back, James was mid-seizure. The blood work showed that his sodium levels were low and therefore a factor in his seizure.

Sodium is a critical part of the chemical make up of your body. I had NO idea.

As I was writing this, the Neurologist fellow finally came in to see James. Today James saw the Oncology team, the Neurosurgery team, an Endocrinology team and the Neurology team. (If you can't keep them all straight, we have added the endocrinology team. The Endocrinologists are much like the Neurologists. A little bit of Asperger's perhaps, and definitely into chemistry and formulas. I asked him a question about whether what our next steps would be if a particular treatment did not work. He answered, "Of course it will work. This is the solution." I have found so many times in medicine that there is not typically one solution. So for him to say that he has the magic treatment is intriguing.)

All that aside, the Neurologist saw James and sent it to a CT scan- STAT! The CT showed that James' brain stem region is swelling, and therefore causing the seizures and his eyes to be static. For some reason his eyes bother me the most. I miss those beautiful, blue, baby eyes. Those eyes that stare at me and I know exactly what he is thinking. The past few days have been extremely difficult for me. Really, the last two weeks. Ever since his craniotomy, I have not seen my baby. And I honestly don't know if I am going to get him back. It scares the living daylights out of me to think that the James I have known and loved over the last 8 months might be gone. And although I will love whoever James is and who he becomes, I think I will always have some amount of grief if the "old" him doesn't make a return.

So we went straight from CT to our new room on D6. We were there about 10 minutes before we were told we were moving up to the PICU. James also has been having what we are calling "mini seizures" now. We, along with the doctors, aren't exactly sure what they are. Sometimes his heart will begin to jump (around 150-160 bpm) and then his face will turn bright red and blotchy. His arms will lock and he will stop breathing for about 30 seconds. He has been doing it all day. The first few times no one believed us. This afternoon, he did it when the charge nurse was in the room. She tried to describe it to the doctors also, but honestly, it's hard to explain. Then while we were on D6, James did it twice more with the entire 10-person oncology team in the room. They finally understood what we meant. We have been told that as soon as his sodium levels reach a more normal level, those will stop. I hope so.



So we are officially in the PICU again. Simon, our nurse from our last stay in the PICU, is back. He agrees that James looks far worse than the last time he saw him. I feel so bad for Simon- I have had a really rough day and he definitely got to hear my temper tonight. It wasn't directed at him, and he told me he understood, but I am really, really frustrated tonight.

I am ticked. I'm just going to say it. Today I am ticked. I would say I am something worse, but my friends at Baylor read this blog and the server's on campus will block my blog if I say anything controversial. Matthew and I have been telling the doctors for a WEEK that we thought that James was having seizures. When we did the EEG on Wednesday, it was only because Matthew and I insisted upon it. It only lasted an hour, and James was asleep during it. James also has some spinal fluid (CSF) on the back of his head. If I had to describe it, the back of his head feels like a jelly pack. We have been worried about this as well, and no one seems to be interested in our concerns. In the PICU they are finally somewhat concerned about this fluid collection.

I am also ticked that it took neurology until 4:30 to finally come and see James today after he had a seizure 18 hours before. I just absolutely think that is ridiculous. I know that they are busy, but the fact that as soon as the neurologist saw James he immediately thought we needed to be in the PICU. We probably needed to be in the PICU as soon as his seizure ended last night.

We also have been saying all weekend that James has been lethargic and not himself. Even at a new baseline of normal, this is not James. I am so mad that it took until Monday for something to finally happen. Nothing seems to happen in the hospital on the weekend. People do get sick on the weekend though. And I am mad that we have been in the hospital for a week and no one has been managing James' case to have caught this.

So now, if they thought they saw the Mama Bear come out a week ago, they were wrong. The Mama Bear is coming out in full force. It's not my normal disposition to be assertive. I'm pretty much past the point of being assertive. I'm even tempted to Med-Evac James in a helicopter to Philadelphia Children's hospital or Dana-Farber in Boston to ensure that James gets the best care. If I thought that it would make the slightest difference, I would. And that option is definitely still on the table, especially after today.



On a much better note- I have the sweetest friends. I'm in a MOMs group at church (much like MOPS if any of you do that). We get together once a month and visit and we have been starting to learn to knit. A whole host of them came up to the hospital tonight and delivered a labor of love- it's a prayer blanket that they have all been working on. It's the most beautiful blanket! They poured their hearts into it. They lifted my spirits, and I definitely needed them here tonight. Isn't it funny how people are put into your life at exactly the right time?? They are such sweet, encouraging women, and I don't know how I got so lucky to meet them.

I'm so sorry about all the medical talk. We know that several people read our blog now whose children are being with rhabdoid tumors, so we want to make sure that we have the medical information in case it helps someone else. There isn't a lot of research about this, so we really want to be able to document what is going on so that maybe in the future it will help another family.

What's in a name?


I thought I'd take a minute to provide a brief history of James Camden Sikes, in the most literal way possible, by explaining how he got his name, the same one we've seen on what seem like a hundred consents and forms at this point.

As last names go, Sikes is undistinguished. The most famous Sikes I can think of are Bill Sikes, the fictional pickpocket abuser and murderer of Dickens' Oliver Twist, Mark Sykes, author of the Sykes-Picot agreement by which England and France divided the middle East into arbitrary regions we're still untangling today, and Wanda Sykes, middling comedienne. It's not exactly what anyone would call a prestigious name. There is no distinction between Sykes and Sikes other than the vowel preference of the first member of that family to write it down. The name is similarly nondescript. It's Yorkish in origin, Sike or Syke means "small stream" or "gutter" so basically any ditch with a current. Adding an s to old English words makes them genitive, so Sikes means "of the stream/ditch/gutter." How very fortunate. James is not more English than anything else either, nor am I. James, like Kara and I, is a mutt. An English-Scotch Irish-Irish-Norwegian-German-Sicilian-Croatian-Mexican-Cherokee American.

Though no one knew it at the time, James and I were both named around 1685, when the first James Sikes came into the world in Norfolk County, Virginia. The details are a bit sketchy, but this James appears to be the very first on record we're likely descended from. A third generation American, he descended from a Sikes who emigrated to Virginia from England around 1635. The earliest Sikes on record who we're likely descended from is a "male" Sikes born around 1590 in England. James had no middle name, as those did not become fashionable outside of the nobility until a century or so later. James, like the rest of his family, farmed nondescript tracts of land on the Virginia/North Carolina border, with members of the family moving indiscriminately between the two colonies. Nothing really set these Sikes, or James, apart. They farmed. They died, and for some strange reason, they named their sons James. Over and over again. One James fought in the Revolutionary War. The family took a break from Jamesing. shortly thereafter Jacob Sikes- probably the son of a James (Jacob is earliest ancestor we can get to with direct evidence- the others are circumstantial) named his son Redden (possible James Redden). Redden moved the family to the Alabama/Georgia border and then disappeared from history, lost to alcohol or some other vice. He also revived the name James.

His son, my great-great-great-great grandfather, James Franklin Sikes, emigrated to Winn Parish, Louisiana around 1850. Until my grandfather's death in 2003, there was always a James Sikes in Winn Parish. James Franklin fought for the Confederacy in the Civil War and when he came home he farmed and assumed the role of post master for the small community he lived in. When the post office demanded a name for the community, the citizens offered the name of Crain- a prominent citizen and the father-in law of James Franklin's son, James Warren Sikes- only to be told that a Crain, Louisiana already existed. Stumped, they agreed to call the town Sikes, as that's who the mail went to. Sikes and Winn Parish have more in common with East Texas than the deep south. There are no plantations, just miles and miles of rolling hills, timber, and fine red clay soil. Winn Parish voted against secession in the Civil War because they just didn't see anything in it for them. The town prospered until the turn of the last century, when a fire decimated it and drove most of the residents, including the Sikes family, to the Parish seat, Winnfield. My grandfather, who went by James, was James Edward Sikes. My father is James Edward "Jim" Sikes Jr. and I am James Matthew Sikes. There is no legacy, no inheritance, no illustrious history, just the name.

James is the seventh James Sikes since James Franklin, and likely the tenth or so overall. I was born to name my son James. Growing up, I hated my first name. I never understood why I went by my middle name, and I hated correcting teachers on the first day of school-especially when teachers shortened it Jim in an attempt to be familiar. I always said I'd never name my son James, and end the tradition with me. I wanted to be the last James. If not for my grandfather, I would have done it. A quiet man, my grandfather had a very reassuring presence, a certain formidable spirit that I always respected and loved. We spent hours fishing without saying a word. Family history meant the world to him, he's the one who put together the extensive history I outlined above. More than that, he was someone I always admired and wanted to be- and one I never had the patience to be. And so I decided to call my son James, not for James Franklin, James Warren, or any of the others, but for him. If James George didn't sound ridiculous, I'd have named him after both my grandfathers. I wanted to call him James too, to avoid the middle-first name annoyance. And so I did.

Camden is a much more recent name. Kara summered in England during our college years twice, once in 2004 and once in 2005. For the second trip, she came with me. I'd planned on going most of the year, and when we started dating, Kara decided to go too. We did the Baylor in Oxford program, staying at Christ Church college beneath Christopher Wren's fabulous spire and exploring the country- in many cases with Kara as my guide, as she'd been the year before. We loved it, I for the history and the country, she for the shopping, the shows, and the Tube. When we talked baby names, English names were favorites, particularly place names as we'd loved our time there. For a girl, we liked Kensington, Kensi for short- the neighborhood in London where Kara stayed. For a boy, names were less certain. Camden is a market neighborhood, a bit eclectic, countercultural. I've never actually been, though Kara has. She's more of a shopper. I told Kara she could have the middle name, as I was already taking 2/3 of the naming. We talked about Owen, Noah, Aiden, Caden, Colin, Oliver, Michael even Baylor, our alma mater. James' due date came and went with no decision.

Finally, Kara went into labor a little after midnight on October 29, six days late. The labor did not progress as it was supposed to- James had the cord wrapped around his neck and was sunny side up. We'd planned a natural, epidural free delivery. Kara refused to even listen to the C-section portion of the birthing class. In the end, we were rushed to a C-Section after a quickie epidural. As you can see, from the beginning James has cared little for our plans. James was a beautiful baby with thick, brown hair and beautiful blue eyes. After the delivery in the recovery room, I held the baby up for Kara before I went out to give our family the details and asked Kara "What's his name?" Drugged and bleary eyed, she blinked once and said "James Noah" "Ok" I said "James Noah" She blinked again and looked perplexed. "No, no. James Camden." "All right" I said, "James Camden." And so Jamesie got his name.

I'm not sure what, if anything, to make of those disparate parts. James has no idea and probably could care less about the history of his name or his family. In a strange way though, it gives me comfort as it makes me think of James as part of something larger, part of our family and our past. A glimmer in Kara and I's eyes before we were married or even engaged, and part of a greater history. I have to think that he was born to us, in our family, for a reason. That all of that history, his name, and the rest of it has some greater purpose to help him through this. That he inherits my grandfather's strength and Kara's spontaneity. He'll need both in the future. I hope that he knows his place in all of this, and that he is perfectly loved. No other combination of factors would have or could have produced a James Camden Sikes, and he is our perfect blessing. I look forward to telling him that, and all of this when he is older. I look forward to watching him try to decide what to name his own children, and welcoming them into our family. Above all, I look forward to James writing his own chapter of the story, one his own children and grandchildren can tell.

Sunday, July 10, 2011

Day Eighteen

James used to love his swing. Faster and higher, always. It's made for nine month old babies and above but we started him around three months because it's just the kind of thing he'd like. I remember the first time I pushed him in it- he just smiled the whole time. I pretended that he was hitting me on his way down, falling backwards and making "boom" noises. He loved that, laughed and laughed. He always got a kick out of physical comedy. Especially if he thought he was winning the fight.

I miss that baby. We saw him for a little bit yesterday, after James got his morphine. As I said, James was wiggling and playing, making noises and talking. Sometime overnight, he went into hibernation again. Overnight he wouldn't eat. This is strange for James, who loves to eat- even when he's not hungry. It comforts him. Still, we attributed it to the morphine. Kara and I are both very sensitive to morphine, so we cut down his dose and hoped he'd get better. He woke up a little and ate around 1:30. We hoped all was well.

We actually took the opportunity of him apparently feeling better to get out and go to a Rangers game. My firm gave us tickets (we were hoping to take James to a baseball game) and we decided to go even though James couldn't to take a break from the hospital. We went with some friends. The topics of conversation were pleasantly free of cancer. The summer heat felt surprisingly real- somehow it never occurred to me an afternoon game would be hot- and the game was pretty decent.

While I was writing this, James had a seizure. At first when he started moving, we were glad. He was moving again- look, we said, he's up! No more lethargy. He'd been out for hours, even without morphine. Eyes gazing off into space. We joked that his Papa Jim on the phone was helping him. But something wasn't right. The gaze was still there- unfocused, unfixed, dead. We got the nurse. She got another. His pulse lept to 205. The doctor came. He started smacking his lips. More nurses. Ativan. His blood saturation dropped. And I stood helpless in the corner, watching him writhe. Completely unable to do even the smallest thing for my son. I felt like an extra in the worst episode of ER ever. I just watched him, and prayed they'd make it stop.

After about 30 minutes of intermittent seizing, they did. We stood vigil at his bedside for an hour, just to be safe, five nurses, a doctor, Kara and I. We traded hospital gossip, because anything is better than talking about what just happened. James resumed his zombie state. And I still have no idea what happened to the boy in the swing. I have no idea how to get him back. I don't know what to do. In the last few weeks I've wondered a thousand times why this couldn't have happened to me instead of James. I've lived a life. Made my mistakes, sure. More than I care to remember. But I've had normal, good life experiences too. Traveled. Gone to school. Learned to drive. Married Kara. James has never even walked. He can't even sit up anymore.

We'll see neurology tomorrow. I bet we get that 24 hour EEG they were on the fence about before now. I'm frustrated, because I feel like we've been saying seizure for a week and no one listened to me or Kara until our son's pulse hit 200 and he started flailing. I'm angry. More than anything, I'm helpless. I can't do a thing to make him better myself. That makes me much angrier than the rest of it. The most likely cause of the seizures is the tumor, which worries me more than any seizure could. They're talking about moving up his chemo start date. It frightens me that anyone thinks that 4 days could actually make a difference. I feel guilty we went to the game, because I wonder if I missed something- even though I know my mother in law watched James while we were gone. Needless to say, Kara and I are both sleeping at the hospital tonight.

I apologize for ranting. Good things did happen today. But the ledger is just not as even as I'd like. Thank all of you for your support. Knowing that so many people are for James is very comforting. I have to believe that all of this is happening to James for a reason, and the effect he has on other people is a big part of that for me.