In the Name of God the Subtle, the Loving
June 7 will forever be burned in my memory. June 7 will always cause me the deepest pain anyone can ever feel. June 7 will always be the darkest day on the calendar, even if the sun is warm, bright, and plentiful.
June 7 was the day my wife and I lost our daughter to lymphoma.
She was diagnosed with lymphoma back in January, and it was a shock to all of us. Yet, we were determined to beat this terrible disease with the same ferocity it attacked our beautiful little Angel. So we started the cycles of chemotherapy.
It was a relatively short treatment protocol – six months – but it was quite intense. Our daughter has an underlying disorder, Ataxia-Telangiectasia, which renders her more sensitive to chemotherapy than normal children. Therefore, the protocol was modified in dose for kids with A-T.
But, intense the protocol was. With each cycle, there were complications. After the first cycle, she came back almost a day later with high fevers and low blood cell counts. She stayed a week in the hospital. But, she recovered.
Then came round two: same problem – complications, fevers, and low blood counts. But, she recovered. Rounds three and four and five were similarly difficult. Throughout the rounds, she would get nausea, fevers, diarrhea, and the like. She even had bloody, quite bloody, diarrhea, and it caused us and her much distress. But, she recovered.
Furthermore, in the middle of all of this was repeated visits to the clinic by my wife and daughter. Whenever something would go wrong, we would call the doctors, and they would say, “Bring her in.” So, my wife would bring her in. That’s not to mention the multiple hospital stays.
Every time she would get chemo, she would stay in the hospital. In the beginning, my wife, Reem, would stay at the hospital with my daughter, and I would stay at home with my other two daughters. But, this became untenable, especially with my work schedule. So, my wife and I developed a system: she would stay during the day, and I would stay at night. When I had to work overnight, she would stay 48 hours in a row. Other times, I would not sleep at home for a week or longer. But, it was easier for me to stay with her at night at the hospital, especially if I have to take call for my pulmonary practice.
But, every time she got chemo, she recovered. In fact, she survived the worst of the chemo rounds relatively intact.
Then came the last round: maintenance. And it was a piece of cake: only three days! That’s nothing compared to what she had been through in the previous four months. We expected to go in and out of the hospital with no problem at all.
Things, however, did not go as expected.
For some reason, this round was the absolute worst, and everything went wrong. The chemo levels refused to go down, unlike her previous rounds. The complications of the chemo – mouth sores, nausea, and diarrhea – were SO MUCH worse this time around. She even threw up blood on several occasions. And soon after the chemo finished, the fevers started…and they never stopped.
They were relentless. No matter how much Tylenol they gave her, the fevers never went below 100 degrees. And with the fevers came the body aches, the fast breathing, and the fast heart rate. She really got sick, but she was always stable. Her oxygen levels would sometimes go down quite significantly, but she was still stable. Her blood pressure still stayed normal.
And there was the pain. She was in so much pain. She knew the name of the pain medicine, Dilaudid, by name. She asked for it every two hours on the dot.
She was like this for almost a week, and once she told me, “Baba, I can’t stand this.” My heart twinging with terrible pain, I told her, “It’s OK habeebee (my love), soon you will get better.”
But, she did not get better.
On Friday June 5, she was still talking to me and my brother, who came to visit. She was still breathing fast, in terrible pain, had relentless fever, and had terrible diarrhea. But, she was still talking and responding. As she left late that evening, my wife expressed concern to me that our daughter was not well, but I reassured her that she would get better, that this was only a temporary rough patch.
Early on Saturday June 6, at 5 AM, however, something changed. She was much less responsive, even to me. And her breathing…her breathing was much more labored and she seemed to have more phlegm and junk in her lungs than before. It was not long before her blood pressure – heretofore the best thing about her vital signs – began to drop like a rock.
They were giving her a lot of fluids to keep her BP high and her kidneys flushed, but it was not helping. And it also seemed that her kidneys were not working as well as they had been. Because the blood pressure was still low, they started a medicine to help to keep it up: dopamine. It is always a bad sign when this medicine and others like it is started. They even gave her blood and other blood products to try to increase her blood pressure. It did not work. To help with her breathing, they put her on a machine with a mask, and it seemed to work initially, but she later had to be placed on a ventilator.
As the evening approached, the doctor told my wife and me that it is quite likely she will need dialysis, which is an artificial kidney machine. Because they did not do it at the hospital in which she currently was being treated, she had to be transferred to a tertiary medical center. Even though my wife and I watched with horror as our daughter deteriorated all day, we still had hope that she would recover. Kids are very resilient, and they can pull through the most dire of illnesses. We had hope that she, despite all her challenges, was one of those kids who can pull through.
My wife left to the other hospital before me, and when I made sure the paramedics were up to date with my daughter’s condition, I left for the other hospital myself. I was absolutely exhausted, and it was a miracle I did not crash on the way there. When I got there, my wife was already waiting downstairs in the lobby for me. Our daughter did not arrive until about an hour after I got there. When our daughter finally arrived, there was a team of about 10 people waiting to take care of her. They were absolutely wonderful, and they tirelessly worked on my daughter.
After my daughter was stabilized, my wife asked to see her. She could not bear the sight: Bayan was hooked up to so many tubes and IV lines; she had a breathing tube in her mouth connected to a ventilator helping her breathe; she was in a coma, induced by medications. It was a sight too horrible to bear, and she cried relentlessly. I tried to reassure her, once again, that this was only temporary. Once again, I tried to reassure Reem that everything will eventually be alright. It was late, so I insisted that she go home and get some much needed rest while I stayed at the hospital. I told her that I would call if anything happened. Truly, I did not think anything would happen, so I felt comfortable telling her to go home and sleep. In addition, only one parent could stay, so I wanted her to get some real rest after such a terrible day.
There was a chair, a most uncomfortable chair, in the back of the room behind my daughter’s hospital bed, and I collapsed into it. That was about 11 PM. I woke up at 1 AM, and the nurses and doctors were still valiantly working on our baby. I kept hearing words such as, “epinephrine,” and “vasopressin,” which are other medicines that help support blood pressure. I knew – as I am myself an ICU doctor – that this was not a good sign, but I put any thought that my daughter was at risk of dying out of my mind. I still had hope she would pull through.
I woke up at 6AM, and I spoke to the doctor, who did not leave the hospital, to get an update on the events overnight: she told me that her kidneys did work a little, but that was short lived, and she was really having a tough time keeping her blood pressure up. In addition, even though they did not give her any medicines to make her sleepy, she did not respond to them at all. I knew that this was a very bad sign. The doctor, however, did not give up hope, and tried to encourage me as much as possible. She told me that she had to put in another special IV line, and I signed the consent form.
But I looked at my daughter, and I was horrified at what I saw: She was gasping for air, even though she was on the ventilator. Her feet were mottled and blue, meaning that the circulation was shutting down. Her fingers were blue. She was still burning up from fever. There was very little urine in the urine collection bag. I knew it was not good. For the first time, I realized that it was quite likely that my daughter is going to die. And a sinking feeling of dread slowly came over me.
I went to the washroom to brush my teeth and get dressed: I was stalling, because I knew that I had to call my wife, wake her up, and tell her the worst news she would ever hear from me: that our daughter was dying.
I picked up the phone and dialed her cell phone number. When she answered, I said to her:
“You better come to the hospital.”
“Why? What does that mean?” she asked.
Barely able to speak, I said, “She is not doing well.”
As she was on her way, I lost it and openly sobbed. I rarely sob like that, but I could not help it: my baby was dying, and I knew it. I sat outside her hospital room waiting for my wife to show up. When she did, I waved to her so that she can see me. When she came up to me, she saw the tears in my eyes, and she knew all was not well. I told her what was going on, and then I broke down again in front of her.
As I cried into her arm and shoulder, I was apologizing. I have always tried to be strong for her; to be her rock under which she can feel sheltered and protected. But, I could not be strong for her on this day.
The doctor came and spoke to both of us and told us what was happening. I asked her point blank, “Are we fighting a losing battle?” I knew we were, but I wanted to ask her the question anyway. She said that this was a fair question, but, again, she has seen kids pull through this. In the meantime, her oncologist came and saw my daughter and said the same thing as the intensive care doctor.
No more than ten minutes passed before they both came back to my wife and me and said, with a grim look on their faces, “We need to talk.” They led us to the “Quiet Room,” where we could talk alone, and they told us that her pupils were now “fixed and dilated.” This means that she has suffered brain death, and it was only a matter of time before her heart would stop. You might as well had shot Reem and me in the heart.
At this point, they told us, we could either withdraw care or keep everything going but not escalate treatment any further. I looked at my wife and asked her what she thought we should do, and she deferred to me, her eyes blood-shot from crying. I did not want to withdraw care, fearing this would be too hard on my wife. So, we elected to keep everything the same and let God do what He wanted.
We went back to the room and sat next to our daughter – I holding her hand, and my wife holding her head and shoulders in her arms – spending our last few moments together on this earth. When the emotion became too much, I would openly sob, again apologizing to my wife for not being strong enough.
My daughter’s beautiful body was ravaged by this terrible disease – called gram negative sepsis – and it killed both Reem and me to see her suffer so much. I knew that her heart rate would slowly go down to zero and that would be it, and I was dreading having to watch that happen. Sure enough, the heart rate went down: 200, 190, 180, 170, 160, 150, 140. I wondered how long it would be. But, then suddenly, the heart rate went from 140 to zero.
As that happened, I kissed her head and said, “Go in peace, my love.”
Both my wife and I knew that one day we would have to bury our child, because kids with A-T rarely survive their teens. We just never thought it would be so soon. In fact, we were planning trips to Wisconsin Dells, Disney World, and other places after her chemo was done. I promised her I would buy her gyros with “extra white sauce.” I promised her that we would swim together in the “lazy river.” But, unfortunately, none of this will ever come to pass. And it really, really hurts.
June 7 will forever be burned in my memory. June 7 became my personal 9/11. I played the movie of her death countless times in my head. I tried to mentally prepare myself for this day for years. But, it did not make it any easier. Not by a long shot. Nothing could prepare me for such a horrific loss. There is no greater pain, no greater suffering, no greater agony than to watch your child die in front of your eyes. I would not wish it on my worst enemy.
Author’s Note: I am very sorry for such a long post, but I needed to do this to help me process the death of my daughter. There will be many more posts forthcoming about other aspects of this terrible event.
If you so desire, you can make a contribution to the A-T Children’s Project (http://www.atcp.org/), to help fund research into a cure for this terrible disease. God willing, I intend to start a non-profit charitable foundation in my daughter’s honor as soon as possible.
Pray for us, because we really need it right now. I thank you from the bottom of my heart, and God bless you all.