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.

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 Eleven

The two pictures above are from our homecoming today. The first picture is of James and Kara catching a well deserved rest. One of James' favorite resting places in on someone's chest on the couch. He doesn't really care whose chest. This is after James got his first dose of at home lortab, so he's in a good place.

The second picture represents our "loot" from the hospital. When you stay in the hospital, all sorts of things accumulate in the plastic bins in the front of the room. When you leave, it's a bit like leaving a hotel room. What should you take? You ask the nurse. They say you can take anything. Kara and I had the following conversation:

Kara: So what should we take?
Me, hurriedly packing: I don't know. Everything? Just throw the bins on the cart.
Kara: Ok

As a result of this planning, we now are the proud owners of he following items:

4 Thermometers
1 Stethoscope
5 Rolls of tape
1 week supply of baby food
1 suction clamp
1 symphony breast pump hook-up.
1 intubation kit
1 blood extraction kit

We're thinking of opening a clinic. I think the home intubation kit will be especially useful. How many times have you needed to give your child a breathing tube and not had the proper equipment after all? Those are just problems we don't have anymore.

Today started out well. By the time I returned to the hospital with two venti caramel macchiatos in hand (so far we've gone through $70 in starbucks gift cards) they'd agreed to discharge us even though James still was throwing up. Whatever the problem is, they said, it's a low-line and not showing up on any scans. We're hoping it will just clear up. So they sent us home with some medicine for nausea and instructions to return if his responsiveness level changed in any way. So far so good. James is throwing up still- especially when he gets upset, but although he's fussy he seems to be all right otherwise. Still, if he gets dehydrated we'll find ourselves back at the hospital so we're praying that he keeps everything down. He's thrown up twice since we got home, which is not encouraging. We'd like to avoid a Fourth of July in the hospital.

Lately, it seem we're on edge about everything. James' sickness. His unknown complications. His vomiting. His medications, the way his eyes look. Are his pupils more dilated than they should be? is he responsive? Are his eyes looking up in the wrong way, or down? Nothing seems safe, we keep hoping that James will at least be well for this week but so far no luck. There is no sense of baseline comfort or normalcy. Case in point: While I was writing this post, something from the back of the house started beeping. For whatever reason, we assumed it was one of James' monitors somehow telling us he wasn't breathing. We rushed back to his room to check on him only to discover it was actually the phone being paged- Kara hit the button on accident while unpacking some groceries. The residual sense of safety that we once enjoyed at home is gone. Still, we try to find humor in things. Our home intubation kit. Our reaction to the phone pager.

Although James has been fussy, he still finds ways to bring us joy. You can tell that even when he's not feeling well, he wants to laugh, he wants to be having a good time. He can't resist smiling every now and then when we do something he thinks is silly. He loves it when you do unexpected things, throw the dog in the air, jump up and down, look at him upside down. We just want him to feel well enough that he can enjoy himself more.

Overall, being at home is much more relaxing than being at the hospital. The days seem longer and time passes with more purpose. It's more comfortable, the beds are real. James has all of his toys at hand. These are all good things.

One other thing being at home has given us a chance to do is to see all of the cards, gifts, and other messages of support we've received. It's overwhelming to see how many people are thinking of James and praying for his recovery. Thank all of you for walking with us.

Day Eight

Here is James preparing to make his trek home. As you can see he is freshly rinsed, finally had a hair wash and got his hair combed (the iodine mohawk was becoming extreme). Most importantly for his healthy self-esteem, James is dressed in something other than a diaper and leads. He is also notably free of wires for the first time in over a week. As an only child first child/grandson (both sides)/great-grandson of many people, James receives more clothes to wear in any given month than you or I may in a year. It is highly likely that this is the first and last time that he will wear this outfit. He is an unreformed clothes horse.

Obviously, the most important thing today was that James got to come home. The reprieve is brief. Given how many surgeries James had in the last week (four, six times under general anesthesia) his body needs time to heal before we begin his chemotherapy. The upcoming week represents the last time in the next year that James will be able to engage in many normal activities, from going to the park, baseball games, or just playing with his friends. After he begins his treatment his immune system will become severely repressed, and we will be unable to enjoy many of these activities. Kara and I have decided to spend the next week doing all the things we won't be able to do for awhile. Go to the zoo. Go to a baseball game. Go to the arboretum. The store. Family pictures before James loses his hair. All of the things that we do with James that this chapter in our lives will interrupt. Our lives are changing irrevocably, and we'd like to enjoy the things we might otherwise take for granted beforehand.

Aside from James happily being allowed to return home today, the day crept by in much the same, tedious way that our non "emergency" days in the hospital have. James was scheduled "on call" (i.e., when they have room) for a surgery today to put in a port through which he will receive his chemotherapy. As always, this meant James couldn't eat after midnight, which makes for an angry, fussy James. This will make giving him medicines and fluids simpler, in the last week James' arms and legs have become a virtual pincushion of IV sites, arterial line sites, and blood work sites. In addition, the drugs he will get for chemo are too caustic to go through an IV.

This surgery- which after multiple craniotomies seemed almost passe to Kara and I- was performed by a different set of surgeons, the general surgeons, than his previous neurosurgical procedures. The difference in the attitude and the procedures employed by each is noticeable. The neurosurgeons and anesthesiologist have much more focus, a greater sense of importance, than that associated with general surgery, tonsils and what not. Although initially things were looking up as we went back at 8:45 for the surgery, this didn't translate into any action as we spent the next two hours waiting in pre-op for the surgery to begin. We watched Regis and Kelly and had time to get a good start on the view- channel options are extremely limited.

One other frustrating fact of life in general surgery is that the staff doesn't know what's happening. They're there to perform a procedure ordered by another doctor, one routine enough that doctor does not need to perform it themselves. In our case this meant a long conversation everytime someone asked for James' "history" forcing us to explain all of his surgeries and the fact that he had a brain tumor. In one instance a nurse mistook him for a girl. This led to many examples of what Kara calls "cancer eyes" the look on someone's face when you tell them your son has a brain tumor. It's cocktail of pity, sorrow, and sympathy. It's one I can usually do without. I know my son is sick. I do not need the reminders. When they took James into the OR this time we were barely concerned- we've become so inoculated to the experience that something as pedestrian as the port, while still surgery, seems minor, not worth the worry.

The port surgery went well, James came back hungry and even more exhausted. After James got back from getting his port, things moved very quickly as we were prepped for discharge. Within a few short hours, we were driving home, James safe in the car seat he arrived in eight days before. I remember thinking that I'd thought it strange when our first nurse, all the way back in general admission, needed to confirm that we had a car seat to take James home in. I never thought we'd have to wait so long to provide proof.

Home with James feels familiar but unfamiliar, everything is colored by what happened over the last week. We cannot go back to the way we were. James is different. We are different. I am trying still to find the positive, and today Kara and I are thankful we have our boy at home again. We are thankful we can treat him to a week of normal life before we begin his arduous journey through treatment. We are grateful for a night of sleep where only James, not those attending to his needs, can interrupt us. i feel as if we were sprinting the 100 meter dash last week, and we've been given a weeks rest to prepare to run a marathon.

Thank all of you for your support as we transition into the next phase of our journey. Your thoughts and prayers are felt by us always.