Memorials

Bahama Blue. Blue Pearl. Dakota Red. North American Mahogany. Finland Red.

They're the names of tombstones. Types of granite to be precise. Bahama Blue is wavy and a bit less lustrous. The others are dappled in a variety of colors from dark blue to pinkish red. They look a bit like the granite you might have in your kitchen, gleaming slabs of rock straight and upright, with a six inch base and an eighteen inch pedestal by rule. If you take the samples, you can wander the cemetery and look for matches. You'll find some. Flat grey is far and away the most popular, a faint shimmer distinguishing it from concrete. The lighter pink comes next, scattered amongst the grey. Less common are the darker reddish colors, dappled with more gray. Not quite red, more maroon. Perhaps one in twenty. Rarer still are the blues, perhaps one in one hundred. The waves of the Bahama Blue are particularly uncommon, we didn't see any. It's an odd sort of shopping experience, walking samples from monument to monument, trying to find a match. One group of four headstones in North American Mahogany contains an entire family, two boys and their parents. Only one has passed, a young boy about a year old. It seems odd that they wanted to bury his brother there as well, until you realize they were twins.

I never gave much thought to what my headstone would look like. I assumed my children would pick it out, along with my grave, sometime after I died. I never thought of picking colors, or had time to parse out the differences between ordering domestic granite or international granite. I figured I'd be past caring by then. I am 27 years old and until recently felt comfortable allowing a few decades before the question entered my decision making.

I never thought that Kara and I would ever have to make this decision for James. Even after James died, the reality of decisions like that always lacked context. You simply have no knowledge of the process. After walking around the cemetery for a bit before dusk, we settled in on one of the blues. It will take a while to get in. We have time to wait.

The reality of course is that all of these decisions become necessary. Despite my best efforts to protect it, the flimsy sheet in a plastic sheath providing James' name and dates to the public has faded completely, burned out by the sun and latent moisture. I took it apart and put in a new placard, his name and dates in my almost illegible scrawl. It won't last very long either. Ants made a home around the concrete base of the vase the cemetery provided for flowers. I killed them all, but they'll come back. The grass grows every week. Three weeks ago the runners were just beginning to reach across the bare ground. I thought about stopping them. I didn't want to believe it had been that long, I didn't want people to think of James' grave as an old one, something in the past. The wound less fresh than those of graves with freshly tilled soil. I decided against it ultimately, at least in part because I couldn't think of how I'd explain it to the groundskeepers. Now the grass is criss-crossing it, threatening to erase entirely the bare earth. James needs a permanent memorial, one that can withstand the sun and the rain, one the ants can't bury and the grass can't cover. I just realized I wrote "son" instead of "sun" every time in this paragraph. Go figure.

Part of the reason why is the same reason the grass growing bothered me. I'm worried that without something there, without something permanent, people will forget. That without some carved chunk of stone with his name and age etched into its side people won't remember that James Camden Sikes was there. That they'll forget about him entirely. That after I die, Kara dies, and everyone who knew him dies it will be as though he never was, and never mattered. I want people to know, even if the only people to see it will be people like me, shopping stone samples in the cemetery. I want them to see his name and age and wonder about him, think about him. I want them to wonder.

I remember as a boy going to visit an old family cemetery in Sikes. In a neat little row at the front were James Franklin (my great x4 grandfather), his wife Susan, James Warren Sr. (my great x3 grandfather) and his wife Sarah. Between them is Clarence Lester Sikes, a nine year old boy who died over a century ago. I remember wondering what happened to him, how he found himself there between his father and grandfather. A century from now, I'd like someone to wonder what happened to James Camden and James Matthew. I don't want them to forget him, I don't want the world to forget, no matter how infrequent the thoughts might be over the years. James was too important to forget.

On one hand I know that these thoughts are silly. No one is going to judge James' legacy by the color or the quality of the granite on his headstone. At the same time I find them very comforting. This is yet again something we can control, after so many things that we could not. Still, whatever words, inscriptions, or carvings I think to put on the stone won't be enough. They won't capture James' personality or his delightful smile. They won't carry the sound of his laughter. For memorials like that we must depend on other sources, on the people that knew and loved him. The people whose lives he touched. The stone is just a marker. It will never be a legacy.

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.

The Roller coaster ride

(James in early March)

I know that Matthew posted about yesterday, but it's 4:00 in the morning and I can't sleep because my thoughts are taking over. I think I am still in shock. At some point I keep thinking that the shock is either going to wear off, or this whole thing is going to be just a nightmare and I'm going to wake up. Neither one of those have happened yet.

Yesterday started out being a good day. Dr. Sacco and his groupies came in early and told me that they were going to take the EVD out in the morning. He had about 10 groupies with him instead of his usual 2-3. They all follow him along like he's the Mother Duck and they are his ducklings, following him in a row wherever he goes. The other day I heard him pass our room in the hallway. He was saying to them, "Now let's go to the office and talk about what you have learned today." For some reason it cracks me up. Probably because he said it very kindly to them all while wearing one of his infamous suits. I call them Pimp suits. Because seriously, no one else could pull off these suits.

My friends Cathryn and Kristin stopped by to see Jamesie. They got to see him without all of his tubes and wiring for the first time! The nurse even said that he might even be able to put clothes on later in the day. I was so excited that I started looking through all the baby clothes that I had brought.

I thought that once the EVD was out, James would begin feeling so much better. That still hasn't happened. He starting throwing up, much like he did before he was diagnosed. Honestly, I panicked. After 3 brain surgeries, I thought that the vomiting had been taken care of. And then I got mad. I mean, could the poor kid just catch a break? Could he just have one day where he felt well?

They are watching the fluid around his brain. If it doesn't go down, they will have to put another drain in (I'm not sure whether it will be internal or external. I didn't even ask.).

When Dr. Klesse walked in, I was just expecting her to talk about the surgery. But when I saw her, I knew that it had to be a rhabdoid. I had started preparing myself that this was the most likely option. I thought that even if it wasn't one, it would be much better to be relieved that it wasn't. I do really like Dr. Klesse though. By the end of our almost hour long discussion, she was crying with us.

Like we've said along, we are going to be positive about this for James. But today it was hard to be positive. Today was a minute-by-minute kind of day. We had to sit and brainstorm what the positive was. Fortunately Matthew's dad, Jim, was still in town and came up with some good positives. I am so grateful that he was still in town. He is a calming presence, and we desperately needed him today.

When Dr. Klesse told us that his prognosis was 50-50, it was actually better than I had been thinking. If you google the prognosis on a rhabdoid, she said that most percentages will show you much lower. But that takes into account that there was no treatment 5 years ago, and we are going to be doing a very aggressive and progressive treatment. I am SO thankful that it is 2011 and we have a hope and a treatment plan. I can't imagine what families must have been going through several years ago. To be told that there is absolutely no treatment plan would be devastating.

It's going to be a long year. I think we will go through the stages of grief and sometimes we will cycle back through those stages. I think today I have been through all 5 stages and have ended up back at stage 1. I spent several hours today begging God to give the tumor to me instead. James doesn't deserve to have to go through this. But the truth is that no one does. No one gets cancer because they "deserve" to, no matter what they have done in their life.

Random things have upset me today. I know that he is going to lose his hair. I have known that for days now. I think I'm ok with that. Tonight I got to hold him on the couch for the first time in a long time. He snuggled up on my chest and laid his head in the little space that his head so perfectly fits. It's the spot where he normally naps (I know, bad parenting 101- I've never made him take naps in his crib. I almost always let him sleep on my chest. I don't regret that decision for one minute.). Parts of his head are shaved right now from the various incisions throughout his head. He has so many at this point, including a large, hook-shaped one in the back from his last surgery. The thing that made me start to bawl is that his head doesn't smell "normal" to me right now. We haven't been able to wash his hair in over a week. It's had several washes of anti-bacterial solution and iodine, but no baby shampoo. Oh how I miss that smell of freshly-washed Jamesie hair! I miss being able to wash his hair and comb it afterwards. I miss being able to give him a bath.

I miss that our typical songs and dances don't make him smile. James is such a happy, happy baby. I have this song that I sing to him when we do diaper changes. It's called "Baby legs" and its sung to the tune of "Baby love". It came about during the winter when the only time I got to see those adorable baby legs was when I would take off his tiny pants for a diaper change. He has this one tiny roll on each thigh- they are the only rolls on his whole body! Normally I sing the song and wiggle his legs in the air and Jamesie laughs and laughs about his baby legs. I so desperately want the baby legs laugh to come back.

I know we are in the best possible place for James, and under the care of terrific doctors. I know that God is the Great Healer, and I know that he can work a miracle through James. I believe that God is 100% in control of James' life, and he knows how all the puzzle pieces fit. I am thankful that on a day like today I don't have to be in control. I am thankful there is a treatment available. I am thankful that we live in Dallas, and therefore James will get to be at home in between his treatments and in his room that he loves. I am so thankful for my church family. I need to write an entire blog about how amazing they have been. I could probably fill an entire book at this point actually. I am thankful for friends that give me faith when I doubt. I am thankful for family that turn upside down their lives to support us.

I know a lot of you keep telling me how strong I am- let me tell you that God has put amazing people in my life to journey with me. I am only strong because I have thousands of you lifting me up. There is nothing in this strength that comes from me. All glory belongs to God because he has truly blessed me with everything that I need. Everytime I needed to hear something one of you, sweet friends, has sent me an email, text, shown up at the hospital, phone call and said exactly what I needed to hear. I don't believe that it is a coincidence.

So I am preparing for the roller coaster ride of a journey we are about to embark on. I know we will have highs and lows. I will rejoice in the highs and the lows, because I am thankful that we have a treatment plan and that we have been given the opportunity to fight. That tumor just better watch out because he was one angry Momma coming after him!

Love you all.