Adam Tumor Wrap-up

I started posting Adam's status to this blog because I needed a way to communicate with family and friends, and I abandoned it when his situation didn't really require it. But, having dropped it mid-situation, I left an uncertain status for anyone who came across the blog without knowing the family. Sorry about that!

Adam is doing great. He came home for visits starting at Christmas, and we had a great Christmas. A few weeks later, he started sleeping at home, and commuting into the hospital for therapy every day, which we continued through the spring, then took the summer off. In the fall, we moved to outpatient therapy a couple of times a week, which we did for the 2011-2012 school year, then took another summer off. This year, he's in preschool 5 days a week, and doing great.

We've had some complications, but they're pretty minor, all things considered.

Back at Rusk

Just like Lindsay Lohan, we're back in rehab.

Rusk is the top facility for rehab in NYC and one of the best in the country, and it’s absolutely the right place for Adam to be right now. In fact, I made a bit of a problem on Friday night and over the weekend when the administrators at NewYork-Presbyterian and Rusk failed to get him down here on Friday. The climax of that fuss was when they told me that they’d like me to put down a deposit to cover three weeks of care because Blue Shield is closed on the weekend. But I think they were just putting me off—when I asked them where I could bring the check, or if they insisted on cash, they stopped returning my calls.

That said, compared to the newly-built magnificence that is the NYP Greenberg pavilion, the physical plant here does seem a little dated & dowdy. But the care here is right, the staff are excellent, and the food is much better than at NYP (seriously, it’s like making NYP one of the best hospitals in the country required that they have the worst food I've experienced outside of an airplane).

On the subject of insurance: besides being closed on the weekend, the Google health insurance (through Blue Shield of California) has been awesome. We haven't had any problem at all with approvals, and Google's in-house Blue Shield rep has been super-helpful, including calling me Saturday evening to try to work through our problems. While it’s hard sometimes to know how much benefit our kids get from the material rewards of our work lives, I know Adam and the rest of our family are thankful for the support that has enabled his excellent medical care.

We’re hoping to get Adam out of here and home before Christmas. Wish him good luck.

Successful Head-shrinking

Here's two photos of Adam this morning, showing his now un-swollen noggin.

Back and Forth

On Tuesday, Adam came back to NewYork-Presbyterian to have an MRI and to have a shunt put in to drain the bubble under his scalp. It’s done wonders for his looks (sorry, I don't have a picture right now).

The MRI looked fine; the doctors say he’s doing great and they expect him to have a really strong recovery.

He had the shunt put in Thursday afternoon. It is a bit of tubing (with an anti-siphon valve) that runs from under his scalp (but outside of his skull) down to his abdomen, running just under his skin the whole way. It drains excess fluid, but it’s my understanding that when his surgical wounds fully heal, it will then be idle, as its source is outside of the skull. Putting it in was just a 20 minute operation.

As of Friday morning, he was cleared to leave NYP to return to the Rusk Institute and get his therapy restarted, but we ran into a bureaucratic foul-up; NYP & Rusk wasted the whole day not getting their act together, so we’re still in NYP’s pediatric wing as of Friday night. Last time we went to Rusk, we wasted two days on admitting and insurance paperwork and on actually getting over there. Right now, I fear we’ll repeat that experience, and not get therapy restarted until Wednesday; however, we’re trying to do all we can (with the help of some friends) to get down there over the weekend and get him going on Monday.

Adam is doing well; he seems more comfortable and he’s smiling a lot more. He apparently spent the day asking for pizza; it’s great to have him that engaged & expressive. His doctors all seem to be very happy with his recovery, and we’re hopeful as well.

Rehab (no, no, no)

It’s three weeks since Adam’s surgery, and he’s in the hospital for the 27th day.

Last Tuesday, Adam went from the hospital (NewYork Presbyterian) to the Rusk Institute, a hospital devoted to rehabilitation. We’ve gone from having a view of the East River to having a view of the Empire State Building. He’s an inpatient there, and he’s in various therapies each day: physical therapy, occupational therapy, speech therapy, etc.

Thus far, it’s hard to tell how much difference the therapy is making. Adam is improving, although that improvement has, for me, to some extent been balanced by a growing awareness of how far he has to go.

I’ve read a number of books about the brain, including books that investigate oddities, such as Oliver Sacks’ works. In those books, you frequently have people who can do one thing well, but can’t do something else: they can sing but not speak, or some other similar mix of capability and inability. But I’d never seen this in practice, and it’s surprising and unintuitive: since the surgery, Adam has always seemed quite functional: he speaks, and he has always successfully navigated the standard neurologist quiz: “Touch your nose. Now touch the doll’s nose.”, and so on. That capability, combined with his general crankiness, made it hard for me to recognize how many things he couldn’t do, or perhaps didn’t do, anymore. For many days, he didn’t smile, didn’t converse (although he could speak and communicate, he wasn’t very responsive and rarely said anything novel).

He is improving: he’s smiling now. And we have faith in the ability of the brain to adapt and heal, particularly in young kids. So we’re confident that he’ll be OK, but it may be a while.

As you can see, he has a big lump on his head where the sutures from his surgery are (also, I gave him a haircut, so it’s more visible). The bubble is cerebrospinal fluid communicating through the surgical opening in his skull. It’s been growing a little bit, and he’s due for another MRI to evaluate whether things are OK inside. He may well end up with a drain installed to let excess fluid drain off and relieve pressure on the brain; if they do that, we’ll be back at NYP for a few days.

Laura and I are swapping off spending nights at the hospital. A month in, this is all starting to stretch us a little thin. I’m back at work, at least mostly, and the kids are in school. Grandparents have come and gone, and my mom is here now. But the stress, the disruption, and the logistical complexity of the back and forth is wearing on us and on the kids. Our friends and neighbors have been great, with food, play dates, errand-running, etc.; thanks, all.

18 Days in Hospital

By my calculus, it’s our 18th day here, but hopefully Adam will leave in the next day or two.

Since my last update, it’s been a stretch of recovery for Adam: general progress, but with a number of smaller challenges or setbacks. He moved to the general pediatric ward last week. For a period of time, he was quite weak on his left side, and couldn’t look to that side; later, he had some small seizures. Most recently, he went through a day or so where he said little if anything original: instead, his speech was a continuous, inconsolable, series of phrases that had little connection to the situation or his desires (e.g. “Mommy lie down with me”). He also has a big bubble of cerebrospinal fluid (CSF) under the sutured area of his scalp.

However, his physical tests (MRI & EEG) look good and his surgeons don’t think that he needs a shunt implanted to keep his pressure under control. He’s doing pretty well; neurology & neurosurgery are ready to discharge him. He’s eating well. He’s using both sides of his body (for example, he will eat with a fork using his left hand). He’s a lot less uncomfortable than he was a few days ago, although he’s still apparently pretty tired of being in the hospital.

The final pathology on his tumor came back, and it confirmed the good news that it’s not malignant; they’ll have another doctor give a second opinion as a triple-check, but we’re confident that it was a “benign” tumor, which is great news.

Before	After
(yes, that cauliflower blob is the tumor)

If life wasn’t complex enough, our au pair, Tabata, woke us at 3:30 last Sunday morning with bad abdominal pains; Laura took her to the emergency room, and that evening, she had her gallbladder removed. Thankfully, it’s a pretty straightforward operation (laparoscopic), she came home the next night, and she’s up & around now, although still regaining her energy. Also, a virus has swept through the family; it had me in bed for 24 hours and slowed me down for a few days; now, Laura is recuperating from her bout with it.

The current plan is that he’ll go from here in the hospital to an inpatient rehab facility, so he can get intensive physical therapy. We don’t yet know where (we’re hoping to go to one here in Manhattan associated with NYU, the Rusk Institute, but we’re not sure if we’re going to get a bed there), nor do we have any good idea how long he might be there (an offhand guess from a doctor here was 2-6 weeks).

So, it’s pretty challenging, but Adam’s improving. We have much to be thankful for.

Recovery: Two Days In

Adam is doing well. Of course, brain surgery is a Big Deal, and one doesn’t bounce out of bed the next morning. He’s feeling pretty crummy, but he’s recovering.

The surgery involved cutting a hole in the top-right of his skull, and they had to go past the right side of his brain, so his left side has been worse than his right, but it’s improving: on Tuesday, he couldn’t look left at all and his left hand was limp: now, he can look all over and he has some grip in his right hand.

Thursday was actually a little worse than Wednesday: Adam wasn’t communicating as well, just seemed a little less active, and had a couple incidents where his eyes rolled all the way back and to the right. The doctors here don’t think these were seizures, but we’re keeping a close watch on it.

He had his compression dressing taken off yesterday, and the drain in his skull removed. I think this will be a big help: the giant turban of a bandage was not only bulky and making it hard for him to lie comfortably, it was also squeezing his head, which couldn’t have been any fun. Plus, it means we now get to see his stitches.

He seems a little more aware this morning (asking for his stuffed doggy), but he slept turned to his right last night (I was sleeping next to him) and fluid puffed up the right side of his face. Again, looks ugly but apparently not very concerning to the staff here.

I don’t have a good idea of how much longer we’ll be in the ICU, or thereafter in the general pediatric ward. Here’s hoping we’ll be home by Thanksgiving.

After Adam’s Surgery

Adam was in surgery for about 6 hours yesterday. Afterwards, his surgeon said that it went very well: he was able to remove all the tumor very cleanly, and there was very little bleeding: in fact, Adam didn’t need a transfusion, either during the operation or afterwards—the surgeon said that it’s the first time he’s done such an operation without the patient needing any blood at all.

The initial indication (based on the test they did during the surgery) is that the tumor was benign, but they’ll do the determinative test over the next week.

He had an MRI this morning to confirm the results and take a look at how he’s doing, and everything looks great. The tumor is gone, there’s no bleeding, and no visible brain damage. It’s all good news; his surgeon described him as “a showoff”. They plan to take his drain out soon, as there’s no sign of problematic inter-cranial pressure.

He is still pretty under the weather from the operation: they had to push the right side of his brain out of the way, and he has weakness and sensory issues on his left side as a result, but that was expected, and he’s improving.

So, the kid’s luck holds.

An Update on Adam

Yesterday, Adam had a procedure where they did an angiogram and embolization of the tumor. They threaded a catheter through his arteries up to his brain and used x-rays and injected dye to map the blood supply of the tumor, then they injected a polymer which closed off the selected blood vessels and blocked about half of the blood supply to the tumor.

The procedure lasted about an hour and a half; it went well and he came through it fine. When he woke up, he was aware & fairly happy (although somewhat uncomfortable and annoyed with being trapped in the hospital and in his bed). This morning, he was a little tired and cranky, but generally in good shape.

Today, he’s having surgery to actually remove the tumor. (He’s in the operating room as I write this). The tumor is about the size of a golf ball; his surgeon describes it as large. I’m not sure of the precise procedure, but apparently they can get access via a relatively small incision; they’re going to get to the tumor by pushing past the left side of his brain, which will give him some temporary physical weakness on his right side. They’ll then cut the tumor out; the primary risk in this operation is the bleeding from cutting the tumor away. The surgery is scheduled for four hours, but it may take longer (which doesn’t imply a serious problem). There’s some possibility that they won’t be able to get all the tumor out in this operation and they’ll have to do another one; this also doesn’t imply a worse outcome; it’s just possible that they won’t be able to get it all from this direction.

After removing the tumor, they’ll test it to determine if it’s malignant or not; that test should take close to a week. (They also, as a matter of procedure, get a second opinion on that diagnosis).

He’ll continue to be in the pediatric ICU for at least a couple or three days after the surgery, and then remain in the hospital for a couple days more, so we expect to possibly be here for another week (plus or minus). The staff here have all been great with Adam and with us; informative, supportive, and helpful.

Henry and Lucy are doing well. It's all a little above Henry’s head, but Lucy’s been concerned for Adam. My father, Peter, arrived Sunday and has been helping out with the kids. Laura's mom, Barbara, came in on Friday and has also been very helpful, more here at the hospital; she's a nurse, so she knows her way around a hospital bed.

Adam's Tumor

Some bad news: we found out on Thursday that Adam has a serious brain tumor. He’s in the hospital now and is going to have at least two operations in the next few days.

Some background: when we adopted Adam in Ethiopia last June, he was somewhat delayed, due to being in orphanages for about a year. At the time, he could barely crawl. After bringing him home, he advanced quite quickly, and was walking by the end of the year. He’s always been a little unsteady, and never learned to run or jump, but we chalked this up to his delayed development.

However, a few months ago, while he was going up & down stairs well, we became more concerned that he wasn’t making as much progress as we hoped; he was also noticeably shaky (wobbly, having trouble standing still), particularly right after waking in the morning or after his nap. However, other than that, he was doing well; in particular, his speech has continued to develop.

A few weeks ago, we took him to his pediatrician, who agreed that his symptoms called for him to be seen by a neurologist; when we saw the neurologist, she recommended some tests, including an EEG and an MRI. When he had the MRI on Thursday, it was clear that he has a large tumor in his brain’s ventricles; the tumor is causing overproduction of cerebrospinal fluid, which is causing hydrocephalus.

Thankfully, he thus far hasn’t had any acute symptoms (no seizures or other obvious neurological issues). However, out of fear that acute symptoms could develop, he’s been admitted to the hospital (Weill Cornell / NewYork-Presbyterian in Manhattan).

On Monday, he’ll have a procedure where they will thread a catheter up to his brain and inject a dye to take detailed images of the tumor (an angiogram); they may also close off some of the blood vessels serving it (embolization), and I believe they’ll install a drain to allow taking off some of the fluid pressure.

On Tuesday, he’ll have surgery to remove the tumor. Then they’ll biopsy the tumor to determine if it’s benign or malignant; that will tell us more about what the future will hold for him.

He’s in the hospital as a precautionary measure, not because he’s noticably ill: he’s the same happy, active kid he was a few days ago, although a little tired of being stuck in bed all day and hooked up to monitors. (Not to mention the hospital food.)

While this is tragic, let’s remember that Adam’s a very lucky kid: I think that if you’re going to have a brain tumor, New York City is as good a place as any to have it, at least presuming you have good insurance (certainly better than Addis Ababa). His surgeon is a world-class pediatric neurosurgeon, a specialist in removal of intraventricular tumors. (He’s also got a room with a beautiful view of the East River.)

Lucy & Henry are dealing with it well so far; they’re sending their love and their drawings.

Thanks for all your offers of help & support. We’ll be happy to take you up on your offers of play dates, etc.; right now, we have two grandparents in town, so we have enough pairs of hands for watching kids, etc.