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.

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.