Thursday, July 17, 2014
Posted by Abbi Perets at 10:48 AM
Sunday, June 22, 2014
We were home, and it was great. And I got a little cocky. I mean, we went to the outpatient clinic, and I did a quick pass-through on the inpatient ward, and there were all these people I didn't know, including a new doctor.
So I was feeling good, and Adi was feeling great, and I was thinking ahead and planning -- and you know where this is going, right? I invited our next door neighbors over for Friday night dinner. "Bring nothing!" I chirped.
We went to this great even on Wednesday and had a blast and then on Wednesday night, Adi had stomach pain and started vomiting. No big deal, right? I mean, vomiting is sometimes a side effect of 6MP.
Except that the stomach pain made Guy and me look at each other and say, "Crap." And in the morning, I called the clinic and they said if he threw up again I should come in, and OF COURSE Adi threw up again RIGHT AFTER I HUNG UP, so we went in, and then we were admitted and the surgeon came and asked, "WHAT DID YOU LET HIM EAT?" And Guy told him that Adi had part of a bagel, and the doctor was livid and implied that had we given Adi knives to juggle it would have been less dangerous, EVEN THOUGH I CHECKED AND BAGELS ARE FINE.
I called my neighbor to rescind my invitation. "God, you and your excuses," she muttered. (SHE WAS KIDDING.) (I THINK.)
The surgeon sent Adi for x-rays every two hours on Thursday night. On Friday, the onco doc paged the on-call surgeon in the morning. Repeatedly. All day long. The on-call surgeon showed up at 6:30pm. And her decision was to continue waiting, doing nothing.
On Saturday morning, a new on-call surgeon came up first thing and immediately began attempting to flush the blockage out. When that didn't work, he send us for an x-ray and then put Adi on a contrast agent which can help unclog blockages. Adi threw up. He reduced the flow of the agent. Adi threw up. He sent us for a CT, to which he accompanied us. As we came out of the CT, he was already on the phone, ordering an OR, and within an hour, Adi was in surgery.
Fortunately, Adi's surgery was very straightforward this time. There were tons of adhesions (none of which, by the way, were caused by bagels), and Adi's small intestine had rotated 360 degrees, effectively shutting it completely. They did not have to resect any of the bowel, thank goodness, and Adi was sent to the surgical ward, and not the ICU.
Today he's doped up pretty well, which is good because he's got a catheter and an NG tube, both of which he hates. I'm hoping that tomorrow they'll remove the catheter, because then we can get him up and walking, which will help move things along.
So, this is why we NEVER PLAN ANYTHING EVER. Please remind me of this next time I am feeling like it's okay to PLAN SOMETHING.
Posted by Abbi Perets at 11:18 AM
Monday, June 09, 2014
So. I stopped writing for a while. And people noticed and send me email and tweets and messages via Facebook, and I sometimes responded, but I mostly didn't. Because it was so hard. It was so hard, and so exhausting, and when I look back at my last entry, Max was dying, and I remember all over again what came after that.
He died while we were away from the hospital for a day, so it was a terrible kick in the face when we came back.
And almost immediately afterwards, we were faced with another imminent death, a four-year-old who had been battling cancer for three years. The day I met this boy, we were on the outpatient ward, and he was building with Legos.
"Hey, is that R2D2?" I asked him, and he looked at me with something bordering on respect. "How did you know that?"
"I know everything," I told him, and he nodded. His mother and grandmother smiled.
A few weeks later, when we were both inpatient, someone gave Adi a gift he couldn't possible play with -- some sort of complicated building kit. We asked one of the nurses who on the ward might like it, and she immediately suggested this four year old. We took it to his room, and his parents were thrilled.
And suddenly, they were in the room at the end of the hall, and the nurses lingered and whispered, and his family came in droves.
And in the meantime, we had a port infection that eventually cleared up and we were discharged and readmitted and discharged again.
And then he had this weird pain in his stomach, and he wasn't allowed to eat for a few days, but then it cleared up and things went back to normal, and it was Purim and Adi was feeling so good that we even took him to see his school friends for an hour.
And then I went on this trip to Italy for cancer moms, and that was AMAZING and I made a new friend and that was AWESOME, and then I came home.
And then Adi went in for outpatient chemo, but he was in terrible stomach pain again, and within 24 hours he was having emergency surgery and it was FIVE HOURS LONG and the surgeon came out and told us that he had a perforated bowel and his stomach cavity was full of fecal matter and it took them half an hour just to wash it all out, and they had to perform an ileostomy. "You need to pray that there's no infection," he told us. "We've done what we can, but if there's an infection..."
When we went in to see Adi in the ICU, he was intubated and sedated, splayed out like a frog in a high school biology class. He stayed that way for several days. And then, thankfully, they let him wake up and he was extubated, and after a few days we were transferred to the surgical ward, where we stayed for a week.
We had to learn how to care for Adi's stoma -- it was horrifying at first, but now it's mostly just annoying. It's a little like having a newborn -- I can never be away from him for more than an hour and a half.
Finally, we were readmitted to the oncology ward. In the meantime, two more children had died there, and another three died in the two weeks that followed.
Adi was inpatient for 6 and a half weeks. After 30 days -- THIRTY DAYS -- we were discharged on a Thursday afternoon, to come back Friday, Saturday, and Sunday for chemo. But on Saturday night the hospital called to let us know that new cultures had come back, and Adi needed to be readmitted. So, six and a half weeks inpatient, culminating in the removal of his port, because it was infected.
We have been at home for almost three weeks now, which is fairly unbelievable to me, because we haven't been home for this long since we started this whole sick adventure.
I am slowly, so slowly returning to something resembling normal. I sometimes remember to return phone calls and emails. I make breakfast and eat it. I take walks at night. I check on my sleeping children. I wake up in my own bed.
And I can think about writing again.
Posted by Abbi Perets at 10:41 AM
Sunday, February 02, 2014
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.
Posted by Abbi Perets at 3:39 AM
Sunday, January 19, 2014
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.
Posted by Abbi Perets at 8:58 PM
Tuesday, January 14, 2014
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?
Posted by Abbi Perets at 6:47 AM
Sunday, January 12, 2014
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.
Posted by Abbi Perets at 6:04 AM