No Greater Pain


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.

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35 thoughts on “No Greater Pain

  1. We all come from Allah and to Him we will all return. May Allah reward you and your wife for the efforts and sacrifices you gave your daughter. May Allah give her from the abundance of His mercy. Our dua's are with you and your family. Sincerely wasalam, KD

  2. salaam Hesham, I don't know what to say, other than as the father of two daughters myself, I have some understanding of the fear. But I can't imagine the pain. I've taken the liberty of linking to your post from City of Brass. The dua of everyone is with you.

  3. Assalamu alaikum,inna Lillahi wa inna ilayhi rajioon. May Allah (swt) give her a beautiful place in paradise. My thoughts and prayers for your daughter, you and your family in this horrible time.

  4. Salams, I am a friend to your sisters, and I have met Bayan when she was a little girl, I remember her full of life MA! It was very tough to read this without tearing and having a sinking feeling in my heart:( She and your family are in my duas. May Allah give you strength, peace and guidance through this very difficult time. I have no words of wisdom, I do know she is with Allah in a much better place with peace and comfort, she will take you and your wife with her to Jannah IA.(ameen)

  5. Brother Hesham, May Allah swt have mercy on you and your family and give the assistance needed to overcome this horrific experience. Thanks for sharing this experience with us and giving hope and help to all the parents who are going through this same ordeal.

  6. Salaams-I am shaken by your loss and the words with which you've described it. May God rest your daughter's soul in ever-loving peace and light, and may He support you and your family through this heartshattering time.You are in our hearts & prayers.- Baraka

  7. Please be strong, you need to stay strong for your wife. Make dua'a. You and your family are in my dua'a inhaAllah. I can't imagine the pain you are going through. But you need to be strong and patient. May Allah reward you with his heavens inshaAllah. Let this bring you closer to Allah (swt).

  8. I know how difficult it must have been for you to write this. I am so sorry for the loss that you and your wife have experienced. I know you will forever treasure the moments you had with her.

  9. Al Raheem will inshaAllah bless you, your wife, and your daughter with a reunion in blissful Paradise. I can't imagine the pain you are living in, but I know Allah only puts on His servants what they can handle so you and your wife must be something special. You are in our duas, and all the parents who have to lose their chidlren. May Allah bring you through this time with more faith and trust in Him.

  10. Dear Hesham bhai,I've recently become a father. Last week I had the most amazing time with my 5 month year old daughter. And as I was lifting her in the air, playing with her the agonising thought did pass me, that how traumatic indeed child death must be. I too would certainly not wish it on my worst enemy. Truly, more painful for a son to lose a mother, is for the mother to lose her son. Hesham bhai, if I were beside you know, how would hug you as tightly as I could and whisper to you that Allah Swt is indeed with the patient. This difficult time too shall pass and inshallah you will find deep peace and meaning from it too.Salaams and duas,Arif

  11. Hesham,That was very open and touching and brave – thank you for sharing your experience. I am so sorry you have had to deal with such a rough series of events. Your daughter will always live on in your heart, but in the meantime I cannot imagine your sorrow. Best wishes to you and your family.Eric Robinson

  12. قررت أكتب العربي يا دكتور هشام لأنو رغم أنو صارلنا زمان منحكي انجليزي بس في أشياء منحتاج نعبر عنها بالعربي ، الله يرحم بيان يارب و يثبتكم ، أحسن دعاء يدعى في المصائب :" اللهم أجرني في مصيبتي و أخلفني خيرا منها " ، الألم اللي حكيت عنو هائل ، بس يا رب يجيزكم أنت و زوجتك بصبركم الجنة و يجعل مكان بيان جنة الفردوس ، هذا عزاء المؤمن

  13. as salamu alaikumBr. Hesham I have though many times about you and your daughter. I cannot relate to the unspeakable pain you must be suffering, and that will only go away when you join her. But I can do duas that 1) You will join her in Jannah2) That Allah will make the rest of this journey easier on you.You writing brought me to tears. And I pray that Allah makes you even a better writer, and da'ee than you already are.was salamBilal M

  14. Dear Hesham,Salaam. I am so very sorry for your loss. You and Reem and your family are in my prayers.Thank you for sharing your feelings and your experiences. I am grateful that you have the strength and the faith to share this with others.While I would never wish this pain for anyone, I must confess – your sharing it with me has made me step back a bit and re-adjust my faith and my priorities – both for the better.As a father myself I know how much you love Bayan. But I cannot begin to comprehend the anguish and pain you are feeling right now.Insh'Allah you will be reunited with her in Paradise.Me and my family are here for you and Reem.Salaam,Junaid

  15. AsSalaamu AlaikumMay God comfort you and your family as only He can at this difficult time. May He grant you healing and Peace. My prayers are with you.Rita Sutton

  16. Assalamu alaikum Br. Hesham: Thank you so much for sharing this. We can all learn from your painful experience, as other posters have already noted. I read your entry last night before going to bed and cried myself to sleep. This is truly a parent's worst nightmare and your words brought that home with depth, honesty and an openness that would be difficult for most other people to express.May God give you and your family patience and may He reunite you with your daughter in Paradise, where there is no pain, sorrow or grief. May He raise you and your family to the level of the great ones who passed before us and who endured similar trials. Prophet Muhammad, peace and blessings be upon him, lost six children in his lifetime. This was just one among many of the hardships he endured. Yet his faith and trust in God strengthened through this experience. I pray that you, too, are strengthened through this experience. May God grant you solace and patience. May He ease your sorrow and grant you and your family Paradise for your patience.

  17. Hesham,I am so sorry to hear of your loss. I cannot begin to imagine your pain and grief. Please note that you, your wife, and your daughter are in my prayers.Paul Anslow

  18. Hesham,I am so sorry to hear of your loss. I cannot begin to imagine your pain. Please know that you, your daughter, and the rest of your family will be in our prayers. May your faith offer you comfort in these painful times.Paul Anslow

  19. Hesham,I am so sorry to hear of your loss. I cannot begin to imagine your grief. May your faith offer you comfort. You, your daughter, and your family are in my prayers. Paul Anslow

  20. Salam,To God we belong and to Him is our return. My deepest and most sincere prayers for you and your family. May she be an usher at Heaven's gate for those who endure life's trials with patience.Ibrahim

  21. Assalamu alaikum Br. HeshamYour article described best what I and my wife went through 9 years ago when we lost our son Mohammad. In our case it was heart defects. We spent about three month in the Hospital next to his bed. He undergone three successful major surgeries to give up the fight during what was supposed to be a minor surgery. It is a nightmare that continue to cause us to shed tears till today whenever we recall it. It is a test unlike any other test. Now whenever I reflect on that experience I know it was the MERCY of Allah that took him. It was the MERCY of Allah that put so much love in our hearts for him and helped us survive after that loss. He SW Gives and then we think we own it and we become so resilient to give it back. This experience teaches us how to submit to Allah SW. How to Love but with balance.How to appreciate what we have. How to enjoy life but never the same way. May Allah with His Eternal Mercy help you guys. May The Almighty gather us with our beloved ones in Jennah with our beloved prophet PBUH to enjoy a pain free Paradise.3zzama Allahu AjrakumNazir Chahin

  22. Words are never enough but you and your family have my prayers. May Allah ease your pain and give you all strength.If it eases your pain, keep writing. Salams,Asiyah

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  25. Asalamu Alaykum Brother Hesham-

    Although I do not know you or your family, subhanallah I came across this article with the blessing of Allah (swt) who brings us reminders daily so that we may return to Him and thank him with gratitude we so often neglect. Your article is so poignant that it brought me to tears, and I am not one to cry easily. It was a great wake up call to really not take things for granted. It is to live life appreciating what you have and being content with what Allah has (or has not) given you and has destined for you. Because at the end of the day what God has willed for us will happen whether we like it or not, the question remains: Will we be wise enough to accept our fate AND also be rewarded for staying patient?

    Only Allah knows what you and your wife have gone through and like you’ve said it is He who at the end of the day brings everlasting comfort and ease to strengthen your heart and give your soul patience to go through life. I have heard time and time again, there is NOTHING worse for a parent than to bury their child. I have seen many parents who have had children ranging from ages of adulthood, to youth to babies, pass away….and it was never easy regardless of the situation.

    The only treasure I can give to you akhi, which our beloved Prophet (saw) taught us, are those who have lost 3, 2, or even 1 child will be honored with paradise for their tribulation if they remain patient. What great news! This life of ours is temporary and happiness is a transient state,…..its only a stepping stone to what truly lies for us…..and inshallah it is there that perhaps, bithinillah you will be reunited with your daughter in eternal bliss :)

    Keep up the great writing and don’t forget to renew your intentions every time, May Allah reward you for your contributions and make you a benefit to this ummah. May He grant you and all parents who have lost a child, the patience and steadfastness that will raise them to the highest levels in paradise. May you be blessed with more beautiful children who will be of perpetual benefit to you in this world and the next. Ameen.

    wasalamu alaykum.

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