Sunday, February 02, 2014

Harsh Realities

A lot of the time, we forget that we're on the oncology ward. Shabbat, in particular, we have our meals, we talk and laugh with other parents and kids, and we forget the terrible reality of what goes on in these rooms, the wars waged on these tiny bodies. But then, something happens, and we crash back into the grim fact that our children are fighting for their lives.

Right now, in the room at the very end of the hall, is a 19-year-old boy named Max. He is dying.

We used to see Max coming into the outpatient clinic for treatments. In fact, I remember one morning, a nurse asked him how he was feeling, and he answered. "Ok. Great, actually," as he walked past, almost more to himself than to the nurse. And I smiled as I pushed Adi in his wheelchair, because Max sounded a little bit surprised and a lot happy to realize that he felt great, actually.

A few weeks ago, they admitted Max onto the bone marrow transplant ward, but a few days later, he was in a room on the regular ward, which didn't seem to be a good sign. Worse, they had removed the second bed from that room, making it into a single. Max slept all day. His mother -- he had never brought his parents to the outpatient center -- sat by his side all day and all night. I never saw her sleep. I never saw her cry. She would push him in his wheelchair so that he could smoke a cigarette outside every few hours.

A few days ago, they moved Max into the room at the very end of the hall.

In the middle of the night, Adi's IVAC started beeping. I left the room to find a nurse, but both the night nurses were in Max's room. I waited -- 5, 10, 15 minutes -- until they came out of the room, one nurse with her arm around the other's shoulders. They reset Adi's IVAC and the beeping stopped. The silence kept me awake, and on one of my outings to the hallway, I saw Max's mother leaning against the wall, the slightest shake to her shoulders.

"It's a matter of days," one of the student nurses told me the other day. "Today, tomorrow, the next day."

I see his mother every day. Every time, I think I should say something, but what? I'm so sorry your son is dying. I'm so scared when I see you. Can I get you a cup of tea? There is nothing I can say, so I say nothing. I do nothing. But I see her, and I think of her son, of Max, and I feel something catch in my chest, and I remember where we are.




Sunday, January 19, 2014

Poison

If I live forever, I will never forget the terror I felt today when I witnessed two of Adi's three seizures.

Less than a week ago, Adi was actually enjoying himself in the hospital. And his intrathecal went smoothly, and we officially kicked off the second block of HR treatments, which includes high-dose methotrexate (HDMTX).

Now, methotrexate -- like all chemotherapy -- is poison. And in these high-risk treatments, they kick off with a 30-minute dose of poison infused quickly, followed by 23.5 hours of poison at a much slower rate, given together with lots of fluids, and followed by a recuse course of leucovorin to get the poison out of the body as quickly as possible. Because it's, you know, POISON.

Now, in our first HR treatment, Adi's body struggled to get rid of the methotrexate. They were still drawing levels at 108 hours post-infusion, whereas most kids have cleared the drug from their system by 48 hours, or 72 at most.

Thursday evening, shortly after Adi's 24-hour MTX levels had been checked, the on-call doc -- who is not actually from the oncology ward -- made his rounds. He looked at Adi's chart and spoke with the nurse outside the room. Eventually, they shared the news that Adi's sugar levels were high.

"Well, duh," I said. "He's taking steroids, and he's been eating a regular diet instead of a low sugar diet." They debated this for a few minutes, and ultimately consulted with one of the senior docs on the ward, who explained to them to replace Adi's fluids with low-sugar fluids (DIET IV BAGS) to immediately resolve the issue.

"I'm more concerned about why you're not checking Adi's 36-hour MTX levels," I said to the on-call doc, pointing at Adi's chart, where "NOT NEEDED" was written next to the 36 hour check order.

"Oh, his 24-hour level was fine, so we don't need to check it at 36," he said.

"Last time, he had enormous trouble getting rid of the MTX," I said, the the guy brushed me off.

A little bit later, I saw Adi's actual oncologist and raised my concerns. He checked things out and increased Adi's fluid rate and put the order for the 36-hour check back on. He told me that Adi had also only received 80% of the MTX dose because of his previous reaction. And I went to sleep.

On Friday, Guy came to switch me, and I went home to shower and get ready for Shabbat. Guy got Adi showered and changed, and they were planning on taking a short wheelchair trip around the hospital when suddenly Adi said he was tired. And within seconds, he was in terrible pain, and then his MTX levels came back elevated enough that within moments, we were told that Adi had suffered methotrexate poisoning. He would need a special drug (see the 4th page, Glucarpidase) that had to be delivered from a single location in Israel, and they were working on securing the proper signatures and so on.

In the late afternoon, the drug was delivered by courier and immediately administered. And then it was Shabbat, and our primary concern was that Adi's kidneys were suffering from impaired function. The 7 litres of fluids he was getting each 24 hours would help with that, they assured us. It would take a few days, but kidney function should return to normal.

And then came Sunday morning.

Adi seemed off this morning. He was hard to wake, and puffy, despite peeing insane amounts. His blood pressure was high. He didn't seem like himself, and the nurse and I talked about what we wanted to ask the doctors on rounds. She left the room for a few minutes, and suddenly Adi was seizing, his head jerking back and forth, his eyes glazed. I shouted for his nurse and then raced to the door. I shouted for the nurse I saw and she came running. Within seconds, our nurse joined her, and someone yelled for the doctor, STAT, and I backed away from the bed, shaking.

Even as the doctor was checking Adi, she spoke. "This is a side effect of the MTX," she said. "We knew this could happen," and part of me wanted to scream, "I DIDN'T KNOW THIS COULD HAPPEN," but I couldn't remember how to stand and speak at the same time. Somebody sat me down in the chair next to Adi's bed, and I kept trying to find my phone. I called Guy and told him, "You have to come, Adi had a seizure," and he said, "I'm coming," and I tried to breathe and listen to the doctors and someone gave me some water, and I kept my hands on Adi and told him I was right there and that he was okay, and he was snoring and they told me he would sleep now and then he was awake and fighting and then he was asleep and then Guy called and the doctor talked to him and then he was there and Adi was sleeping, and I was so, so tired.

Even though they had treated Adi for MTX toxicity, they explained, some of the drug had already been absorbed into his system, and this had caused the seizure. It might happen again, the doctor cautioned, and Guy and I sat with Adi and watched him until Guy sent me out of the room to get some air.

I was outside the hospital, walking in circles, crying, breathing, when Guy texted and immediately called, telling me to come back. People kept piling into the elevator, and it took us forever to reach the seventh floor. I raced to oncology to find them moving Adi into the room right in front of the nurse's station. "He had another seizure," Guy said, and they had to give him something to stop it, and he was sleeping again, and there were so many people in the room, and Adi's face was so slack and empty and I could feel the terror that threatened to just swallow me, and it was so tempting to just give into it, to let it swallow me whole, but then Guy was there, talking to Adi, and so I came back over to the bed and talked to Adi, and we watched the numbers on the monitor and we stayed with him and the hours went by, and then I said to Guy, "Is this what his eyes did before?" And he said, "Yes, call them!" And I yelled for the nurses and they yelled for the doctor and then Adi was snoring again, and now it is 4:55 am on Monday, and this is my shift to be awake and watch the monitor and watch Adi, and part of me feels like it will never fully relax ever again.

I can tell you that just a few hours ago, when we changed Adi (he had wet the bed because he is sleeping so soundly and getting insane amounts of fluid), he told me, "You're not going home, Mommy," and they were the most beautiful words I have ever heard.

And I hate cancer.

Tuesday, January 14, 2014

It All Depends on Your Point of View

So, the last few days have either been fantastic or not, depending on your point of view.

Yesterday, Adi started off the day fasting, because he was supposed to have an intrathecal. They had postponed the Vincristine he was supposed to get at night because his counts were trending downwards, but the IT was still a maybe.

When I arrived, Adi was playing happily -- he'd taken Concerta, which kept him calm, and hunger-free -- and all was well. He had his garbage trucks and his trash, and he worked with one of the teachers in the playroom on a couple of different activities. Everything was going smoothly.


Just after morning rounds, Adi's CBC came back, and his oncologist came in. In Hebrew, she told me that there was no blood in his eye, and I stared at her for a minute, until I understood that she meant there was no blood visible to the eye in his urine. OK. But, she continued, his counts were still trending downwards, so no IT. Maybe you want to take him home? But you have to promise that he'll drink constantly.

"I can't really promise that," I said, and we agreed that he'd stay in the hospital hooked up to fluids, but that we'd get an afternoon break to go to the mall.


With fasting no longer an issue, Adi went to help prepare (and eat) Belgian waffles.



After that, we hung out in the room for a while, and just as I fell asleep, my father-in-law arrived. He had cookies and other treats with him, which Adi was happy to help him eat, and then Saba stayed with Adi while I went home and met up with Guy. We got the other kids together and came back to take Adi to the mall with everybody.



We got Adi unhooked and headed over to the mall for dinner, and the requisite garbage truck purchase, natch. And then Adi and Guy went back to the hospital, and I took the other kids home.

Today, I came a little late because there was laundry to be done at home. So Guy hung out with Adi -- who was fasting because of a scheduled abdominal ultrasound. Once again, when I arrived, Adi was in the playroom, his trucks and trash cans around him.



He was friendly, sociable, and in a great mood. He was already post-US when I got there, so he didn't need to be fasting, but the Concerta kept him from feeling hunger (and totally chilled, probably because the dose is too high now that he's lost weight...), although he did agree to eat a piece of pizza that we made with the chef who comes on Tuesdays.



So, if you're coming at this from the perspective of someone who wants Adi to be happy, it's been a great couple of days. But on the leukemia-fighting front, it's been a little slow. We are back on the schedule to get Vincristine this evening, and we are set to have an IT tomorrow. Of course, that means we'll be fasting tomorrow... again. But hey, we'll also be starting a low-salt, low-sugar diet, so what's the difference?




Sunday, January 12, 2014

Why Bother Planning?

So, Friday was going just fine. I cooked. I took food to the hospital for Rony and Gaya, and came home with enough time to drink coffee and finish posting. I had time to fight with Guy over the COLOR OF THE TABLECLOTH. The table was set, the floor was washed (not by me, don't be silly), and we were READY.

And then Adi peed, and Guy told me that there were little tiny blood clots in the pee.

We called the on-call doc -- and that was its own story, because no one answered and it took forever -- but the upshot was, if it happens again, you'll need to come in. And OF COURSE it happened again, literally moments before candle lighting.

We called the on-call doc again and got permission to first take Adi to shul for a little bit, then bring him in. So Guy and Adi went to shul to hear Yedid Nefesh and Lecha Dodi, and then they left for the hospital.

I can't even tell you how depressing it was.

Because he loves me, Guy texted to tell me that they got a room in the onco ward, that everything seemed fine, and that Adi was being flushed with fluids.

Saturday night, I went to the hospital to take over, and Adi was feeling pretty good. He's been great all day, stuffing himself (two yogurts, two jellos, pizza, edamame, schnitzel, potatoes, choco, a milkshake, and maybe a few more things I've forgotten -- and it's only 2pm), peeing nicely (and without visible blood clots), and being a funny, funny kid.

Of course, we start the second HR block tonight. We'll kick it off with a little Vincristine, then jazz it up tomorrow with an intrathecal and some methotrexate, because WHY NOT.

So you see, people, this is why I tell you that I have no idea when you ask if I'm free tomorrow at noon. Ask me tomorrow at 11:45, and I might be able to tell you. Planning ahead? HAHAHAHAHA.


Friday, January 10, 2014

Moments

Wednesday Evening

We go to the bar mitzvah of the son of good friends. It's in Petach Tikva, just moments away from the hospital. Two volunteers sit with Adi at Schneider so that Guy and I can both go to the party. I gorge on sushi and hug friends I haven't seen in months. And then Ram, the bar mitzvah boy, gets up to speak. At the end of his speech, he wishes a full and speedy recovery to his grandfather, who suffers from ALS, and to his "good friend, Adi Perets, the big hero we all love," and I burst into tears. I hug Ram and his mother, my good friend, Gazit, and feel grateful to have friends like these.

Late Wednesday Night

I return to the hospital to sleep, but Adi is awake, and talks all night about the garbage truck he wants me to buy. It's white and orange and it has a lifting arm. I close my eyes, and Adi leans over and strokes my forehead. "It's okay, Mommy," he says. "You can buy the garbage truck soon."

Thursday Afternoon

I get home early after not sleeping at the hospital. I get Yoni and Amit through their baths and into pajamas, and I convince them to come to bed with me... at 7pm. We sleep.

Friday Afternoon

One of the nurses, Hadas, who has become a friend, brings us cake just before Shabbat. I am delighted, and it's really not about the cake.

Friday Evening

Adi and the little girl he is rooming with, Gaya, are sleeping. Gaya's mother, Rony, a kibbutznikit from the northern part of Israel, joins us for Shabbat dinner. We sit and talk and laugh, and it's almost like a normal Friday night meal. For a few minutes, we forget where we are and what brought us together, we're just three people talking and laughing. There is a LOT of laughing, and it does us all good.

Saturday Morning

Thanks to the blood gushing from his mouth and nose, Adi looks like a vampire after a meal, as one of the other parents so aptly termed it. This becomes my new favorite phrase, and I use it no less than 20 times in the next 24 hours.

Saturday Night

Guy and the girls go to a bat mitzvah in Beit Shemesh, and I stay with Adi in the hospital. I watch approximately 7 episodes of The Mindy Project and literally laugh out loud. Which feels strange, but also nice.

Sunday Morning 

We learn that one possible cause of Adi's fever is herpes simplex. Rony tells me that I can keep the bottle of wheat germ oil we've been sharing -- we spray it on gauze pads and dab it on our kids' lips to help get rid of their mouth sores. I can't stop laughing when I realize why she's giving it to me.

Sunday Afternoon

I start getting emails from people who are concerned that I have not posted in several days. I make a mental note to post to my blog later on.

Monday Morning

We go to see the ENT because Adi had another nosebleed. The doctor asks me, "So, before the leukemia, was he... normal?" I can't formulate a good response on the spot, but when I retell the story later, I have some great comebacks. I am GREAT in the replays of my life. I answer more concerned emails and promise to update the blog.

Tuesday Morning

They tell us we can go home later in the day -- how unexpected! But they tell us we'll be back in the outpatient clinic on Thursday for treatment, and checking in again Saturday night. We spend the rest of the day planning to leave. I tell Rony to make sure to save us our spot. (It's taken just hours after we leave.) I think about blogging when I get home, but I get balloons for Yoni's birthday and go to sleep instead.

Wednesday

We sleep, Adi and I. We sleep a lot. And yet I am still tired. (My father told me, "When Adi is better, you'll be better.") Adi's madricha Lilach stops by and wins a huge smile. I can't remember where my laptop is, so I don't blog.

Thursday

We go to the outpatient clinic for treatment. The treatment is an hour, with two and a half hours of blood pressure monitoring afterwards. We arrive shortly after 8 in the morning and do not leave until 6pm. I thought about taking my laptop with me, but instead I watched Downton Abbey.

Friday Morning

Adi is lying on the sofa, and I can hear his pre-vomit sounds. "Mommy, can I please have a little Zofran?" he asks. I give him some, cook for Shabbat, run food over to the hospital to Rony, come back, and sit down to finish this post.

Sunday, January 05, 2014

Alternate Realities

Time works differently in the hospital.

In the morning, I wake up when the night nurses transfer their patients to the day nurses. I fold up my bed into a chair and change from pajamas into clothes. I help Adi to pee. I brush his teeth. The breakfast tray comes, and Adi refuses to eat. Blood is drawn and sent off to the labs. I return the breakfast tray and try to find a few minutes to buy a cup of coffee from the cart downstairs. I sit next to Adi when the doctors come in on rounds. I answer questions.

The lunch tray comes, and I try to convince Adi to eat. I return the lunch tray and remind the nurse that Adi's Vanco needs to run over two hours so he doesn't have an allergic reaction. I sit next to Adi and put the bar on his bed up or down, according to his requests. I listen while the morning nurses hand over the patients to the afternoon shift. I try to find time to get another cup of coffee from the cart. I doze. I wake with a start to tell the nurse that Adi's IVAC is beeping because there is an air occlusion or because he has finished his Vanco after two hours or because the machine is old and finicky. I notice the dinner tray is waiting for us.

I return the dinner tray. I unfold the chair into a bed and put the sheets on it. I change into my pajamas and try to sleep between the beeps.

When I sleep at home, I wake up in the morning and take a shower, lingering a few extra minutes because it's the only time that's truly mine anymore, these few moments before I wake up Yoni and Amit and start the day. I put them in the tub, get them dressed, have coffee, serve breakfast, take Amit to gan, and drive to the hospital.

I park on the sidewalk in front of the main entrance, along with everyone else lucky enough to have a handicapped parking sticker. I show my bag to the security guard -- or he sees that it's me and waves me through with a nod to show he remembers me from all the yesterdays.

I stop by the coffee cart. "I can't remember, do you like foam?" the man asks as he makes my cappuccino, and I'm a little bit grateful that he can't remember, because maybe it means I'm not here as often as I think I am.

In the elevator, I press 7, and I imagine that everyone steals glances at me, silently grateful they can get out on the other floors. In reality, few of them notice me, and most of them probably have no idea that 7 is oncology. I didn't know that before September 13.

I swipe my card -- we oncology parents have cards -- to open the doors to the ward and take my seat next to Adi. By the time I arrive from home, it's just about time to return the breakfast tray. Guy packs up his things and leaves for work. I watch the hours pass if I have visitors and drag if I don't. I listen to Adi snore when he sleeps. I check to make sure he's breathing when he doesn't snore.

When I walk into the hospital, I see familiar faces. The coffee cart staff, the nurses, the other parents, the secretaries. I know where to find a wheelchair when we need one. I know where the nurses hide to smoke. I know where to sit to get the best wifi connection.

In my other life -- the one where my kid doesn't have leukemia -- I was supposed to be returning from a 10-day vacation in China. Instead, we've just spent our third consecutive shabbat in the hospital, where time is a fluid concept.

Wednesday, January 01, 2014

Third Verse, Same as the First...

OK. So after his crazy anaphylaxis, Adi stayed an extra day in the hospital and came home last Wednesday night. By Thursday evening, he had a fever, and that meant a trip to the ER. And then they told us that there was no room in oncology, so we'd have to be on a regular pediatric ward.

By the time we got to bed, it was around 1am. The on-call doc on the ward came and asked a lot of questions, including: "What medications is he currently taking and at what doses?" Um, really? He's a patient IN THIS HOSPITAL. Can't you access his records? What if I get something wrong? They also couldn't figure out where to get some of his meds.

"Um, maybe down the hall, in oncology?" I suggested. Clearly, the distance was too far for them, so in the end, Guy went and got a couple of things by himself, and for our entire stay on the peds ward, we administered Adi's Zyprexa ourselves.

"Why does he take Resprim?"

"Because he has leukemia."

"Why do you keep the door to your room closed?"

"Because he has leukemia."

"Why does he have a port?"

"Because he has leukemia."

Every day, we went to the onco ward and asked if they had found any room for us. Every day, they really did try, but there were a couple of kids who had to be in isolation, which reduced the number of available rooms.

Over on the peds ward, the department head's rule was that once a port was deemed infected, it could not be used, and it would be washed with an alcohol lock daily for 72 hours. Our oncologist disagreed ("It's a minor infection, and he's on antibiotics. There's no reason to stop using the port."), but the other doctor had seniority, so my kid suffered the indignity of being stuck -- and I WISH I were making this up -- about 27 times until they got a working peripheral line in.

The onco ward is fairly quiet. I mean, there are a couple of people who have loud voices, but you can shut the door and shut out the noise. On the peds ward, there is CONSTANT noise. They use a loudspeaker to call patients to the treatment room, to ask if anyone has a charger for an iPhone 5, to remind the parents to return the breakfast, lunch, and dinner trays -- it is noisy. And EVERY day is grand rounds, with TONS of students and doctors who think their stories are more important than my kid's rest, and MORONIC IDIOTS who use tongue depressors to check my kid's throat when his mouth is FULL OF BLEEDING SORES. (I refused to help that guy. Pretty sure Adi gave him a black eye.) (Just kidding.) (Sort of.)

On Sunday, Adi was supposed to get platelets, but they waited until the platelets were delivered to try to put in a peripheral line, and then things didn't go well, and then they finally got a line in, but it wasn't a good line, and so the platelets were going in veeeeeeerrrrrrrry slowly, so they tried to use this doohickey that puts pressure on a syringe, and in the end -- and it causes me actual physical pain to write this -- the platelets expired and they THREW THEM IN THE TRASH.

On Monday morning, Adi's platelets were still very low. "He needs platelets," I told them. No one even listened. On Monday evening, I told them to take a new CBC. They didn't. On Tuesday morning, when Adi woke up, his nose gushed blood -- it looked as if someone had been murdered in his bed. He coughed up huge chunks of mucousy blood (they look horrible, but the oncologist assured me that it wasn't anything to worry about) and bled and bled and bled. They got him hooked up to platelets at my insistence, and when his CBC came back, they discovered that his platelets had dropped to 5000. Hence the gushing blood.

That afternoon, when the oncologist came by and I related our adventures, she agreed that she would also push for Adi's swift transfer back to onco. And lo, the transfer order came, so the peds ward dosed Adi with his morphine and sent us on our way, which INFURIATED the onco ward nurses. "WHO TRANSFERS A KID WHILE HE'S GETTING MORPHINE?" they shrieked. "ALSO, WHAT ANIMAL PUT THIS SET IN, IT'S A MESS." Within the hour, they had us sorted, though, and all was well.

Today, Adi still has a fever, but his abdominal CT, echo-cardiogram, and eye exam were all normal. "So, why do you think he has a fever?" I asked the oncologist on the ward. He shrugged. "Eh, fever." he said. "So I shouldn't worry?" I asked. "You're his mother," he said. "It's your job to worry."

I EXCEL at my task.



Meanwhile, Adi has been playing quietly with his garbage cans for the past 4 or so hours. I watched two episodes of Homeland (GREAT FOR RELAXATION). And he's sucking down the first of two units of blood right now. Not a bad day.