Today I watched another family watch their baby die.
Wednesday, August 13, 2014
Posted by Abbi Perets at 10:25 AM
Sunday, July 27, 2014
This morning, I set out with Adi for Schneider. Again.
This time, though, I was more prepared.
“Adi, if we hear a siren, what do we do?”
“We get out of the car.”
“Lie down on the ground.”
We drove. According to Waze, my regular route was backed up, so I got off at an earlier exit and took surface streets. And then, just a few minutes from the hospital, just like last time, the sirens started up.
I got Adi out quickly -- or as quickly as possible with Adi -- and got him onto the sidewalk. It’s very, very hard for Adi to get down to the ground, but he did it, and then I shielded as much of him as I could with my body.
The boom was very close, and very loud -- it turns out that a rocket fell in an open area in Petach Tikva. Adi told me how brave he was, and I agreed. And then I helped him get back up, and we got back in the car and drove the rest of the way.
I wonder when I’ll be able to drive without waiting for the sirens. I wonder when I’ll stop feeling so tense all the time.
Posted by Abbi Perets at 12:11 PM
Saturday, July 26, 2014
Friday night. Shul had just ended, and we were all outside. Kids were running around, circling around their parents, running ahead, shouting to their friends. People stopped to chat, walked a few steps, stopped again. Guy and I were with Adi, Amit was somewhere ahead. Yoni was out of sight -- not at all unusual.
And then -- the siren. For an instant, everyone froze. And then -- panic, immediately followed by doing what we’ve been taught. Guy grabbed Adi and propelled him across the street. “We have 90 seconds, people,” he shouted. “No need to panic.”
Amit was suddenly there with us, and we moved with a group of people towards the closest house.
One woman, Yoni’s friend’s mother, was crouched with her two youngest children, covering their heads. “Come into the house,” I told her. “Into the safe room.” She was frozen, not quite sure, so I took one of the children from her arms and we moved quickly into the house, into the safe room with the others.
“Everything is okay, I said to Amit and Adi, and to the little girl I was now holding. “Everything is fine.”
“Hashem will protect us,” said one of the other mothers. Some of the kids were crying, and the moms were close. We’re not used to this here. We haven’t had years of rocket fire to harden us, to make this another part of living here.
“I don’t know where Yoni is,” Guy said, I asked if he wanted me to go look for him. “No, I will,” he said, and he left.
We heard the booms, close by. And a few minutes later, someone came in and said we could leave.
The owners of the house -- who had been in someone else’s safe room -- came home, smiles and welcoming arms, hugs all around. The sent us home with Yemenite pitas and sauces.
Yoni, it turns out, had arrived home moments before the siren. Together with Lior, Shir, and Noam, he was in our safe room, and they were all fine.
But it hardens you, little by little. It makes you angry that you have to live in fear. It changes you.
Posted by Abbi Perets at 1:12 PM
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