My Beautiful Family

My Beautiful Family

Saturday, September 13, 2014

The Monster and the Miracle


August 28, 2011 was just like any normal Sunday. We went to church as usual, and had dinner at my parents' house. Everything seemed fine. Then, that night, after we put the kids to bed, Jad started to get stomach pain. He said he felt like knives were stabbing him. He started to throw up, and he kept wailing in pain. He was freezing cold, but sweating too. He couldn't even stand up. He just kneeled over the toilet and screamed that he needed to go to the hospital.

I was very worried. I knew Jad wouldn’t say that unless something was really wrong. I couldn't take him there because I had two children (one a young baby) asleep in their beds. I then thought of calling my brother, Aaron. He graciously accepted my plea to take Jad to the emergency room.

When Aaron arrived, I had managed to get Jad down the stairs, but he was kneeling over the steps moaning, with a bucket nearby. It would have been comical, had it not been so disconcerting. I watched, feeling helpless, as Aaron slowly led Jad to his car and off to Durham Regional Hospital. Aaron told me he drove as fast as he could, recognizing just how bad it must be… Jad was a very tough person, and he could barely talk.

I didn't sleep well that night. I keep waiting for my phone to ring with an update. The only comfort was in knowing my brother was with him.

Aaron related to me the events of that first night, and it made me even more grateful he was there. When they first got to the emergency room, nobody seemed to notice Jad could barely stand. While he was bombarded with paperwork, Aaron gingerly held up his body weight.

When Jad got to a room, he was given an IV to remove the pain. Ridiculously, though, the nurse had to stab him many times before finding a vein. She kept apologizing, saying she was new. Jad didn’t seem to notice at first, but finally grunted in displeasure.

Jad saw a doctor soon after, and after explaining his symptoms, the doctor recommended that he get a CT scan. Aaron and Jad were then told to sit tight until the doctors transferred shifts. That ended up being several hours. When the second doctor finally arrived, he confirmed the need for a CT scan. Jad had to drink a liquid in three doses to cleanse his body. A nurse was supposed to check on him to give him each dose, but she didn’t. Aaron took it upon himself to administer the liquid to Jad.

Finally, he got the CT scan. Brian McDonald, someone we didn’t know then but do now from church, gave him this scan. The doctor came in to show Jad the x-ray, which showed a large growth on his liver. He told Jad grimly that he most likely had a cancerous tumor.

At receiving this news, Jad wept. He did not want to die and leave his family alone. What would they do? He wasn’t ready to leave this earth yet.

I am so grateful Aaron was with him to comfort him during this heartbreaking time.

I came to the hospital the next morning after taking Casey to school. I asked for prayers from my friends and family, and held on to faith that all would be well. After all, they had not yet confirmed it was cancer.


                                             Rigel and I visiting Jad in the hospital.

We were so blessed and grateful to soon hear that cancer was out of the list of possible diagnoses. If that huge growth were a malignant tumor, Jad would have been dead long ago. We breathed a sigh of relief, but longed to know what was really wrong.

That whole day, we waited to know what was in his body. At one point, a whole room of doctors came in, and said they didn’t have an answer but were still working on it. All they knew was that he had something large, living, and growing inside of his liver. They said that Jad would have to have a lot of blood taken. Some of the blood would be sent to Maryland to be tested.

We were so grateful for the visitors we received during all this waiting. It made it a little easier to endure.

The following day, August 30, the doctors had a theory: Jad had a Middle-Eastern parasite that had been growing inside his body for years. They said his condition must be very rare since none of them had ever seen it before.

Once the blood tests were sent off, Jad was able to return home to await a diagnosis. He would have to return to the hospital once the blood tests came back. The doctors said if the blood tests were inconclusive, he would have to have a liver biopsy.

Exactly one week later, on September 6, Jad and I went to Duke University Hospital to get the news from Dr. Luke Chen, the Infectious Disease Specialist there. After about four hours at the hospital (most of it spent waiting), we got our answer: Jad had Echinococcus.

Dr. Chen, a Chinese man with an Australian accent, drew pictures for us of what was going on in Jad’s liver. He had never actually seen anyone with Echinococcus before, but he said Jad must have had the disease for at least 10 years, based on the size of the cystic matter. He told us how this parasite can infect many organs, and that Jad was very lucky it was the liver, because the liver is the only body part that can regenerate itself. He also expressed relief that the infection manifested itself when it did, because it could have ruptured at any time, ending Jad’s life.

A doctor in the Northeast told Dr. Chen about a patient she had had with Echinococcus. She said that if Jad needed surgery, it would be best for a cancer surgeon to operate. Dr. Chen told Jad that if he had surgery, Dr. Bryan Clary would be his surgeon. He had never operated on someone with this condition, but he was one of the best out there.

He put Jad on a pill that is supposed to cure Echinoccocus (it had to be specially ordered), in the off chance that he could be cured. More realistically, though, Dr. Chen expected the medicine to just stop the cyst from growing. Jad had to be on this pill for two months before he could have surgery

We left the office that day a little overwhelmed, but with faith all would be well. We really liked Dr. Chen, and knew Jad was in good hands. He was so interested in Jad’s case, and wanted to learn everything he could. He was also very friendly, helpful, and offered us as much information as possible. We could tell he cared about Jad’s well-being.

After that appointment, we were really curious to find out how Jad got this infectious disease.

Well, after some reflection with his mother, Salma, Jad figured it out:

In the Spring of 1999, when Jad was 17 years old, he and many members of his family went to have a barbecue near a farming community on the Dead Sea. There were people on the street selling lettuce from their farms. Jad’s family ended up buying a large box of lettuce. Jad loves lettuce, so naturally, he started to eat it. One of his mother’s cousins said that the lettuce should probably be washed before it was eaten, but the consensus of the group was that if they just shook the lettuce off, it would be fine. His whole family ate the lettuce without a problem. That evening, though, Jad started to get very itchy. He also had bumps all over his body, and swelling. Salma took Jad to an urgent care to be checked out. The doctor attributed the bumps and itching to an allergic reaction. He gave Jad a shot to help with the itching and swelling. The shot worked, so Jad went home.

This would not be the only time Jad had a reaction over the next few years.

In summer 2002, when Jad was living in Port St. Lucie, FL, he had another reaction. He had gone out to eat and eaten a tuna salad. Late that night, he got very itchy, with bumps and swelling. His uncle Hani took him to the hospital, and the doctor said he probably had food poisoning. He was treated for that, and sent on his way.

Jad's uncle Hani complained to the restaurant about the food poisoning, but the restaurant did not want to take responsibility. The hospital recommended that Jad to go to an allergist to try to find an explanation for his symptoms. After the tests, the allergist told him he had no allergies at all. The restaurant still claimed it wasn't food poisoning, but offered to pay for the allergist appointment.

The following summer, something much worse happened. Jad had eaten dinner at home with his uncles William and Hani, and his other roommate, Ihan. Hani had made chicken wraps with large amounts of onion. After dinner, Jad felt bloated. That night, while he was sleeping, Jad got a huge stabbing pain in the right side of his body. He was terrified because he couldn’t feel or move his right side at all. William and Ihan quickly took him to the same hospital as the year before. The doctor was not that concerned about Jad’s condition, and said he just had bad gas. He gave him a lot of pain medication and pills for bloating.

In late summer 2004, when Jad was in Jordan, something else happened. He got something called a Christmas Tree rash. It lasted for about 45 days. The doctor said it was very common and not dangerous – just an allergic reaction.

Following that summer, Jad did not have any serious symptoms. He would just occasionally have pain under his ribcage. He always assumed it was gas.

After we told Jad’s family that the issues he had all those years were due to Echinococcus, they started to do some research. They said that many people in Jordan over the years had gotten the same infection – many in their lungs – and there had been many deaths. Only in the past 6-7 years had Jordanian doctors finally started to get familiar with the disease.

Did it bother you that all of these doctors just made assumptions instead of finding out the issue? Did you recognize, as we did, that had any of these hospitals done a CT scan, Jad could have easily been cured, with no need for surgery? We had a little frustration over this, but mostly just held on to our hopes that the Lord would bless Jad to make it through this, and that our family would come out stronger with lessons learned.

Before surgery was scheduled, Jad had another CT scan, just to see what was going on in his liver. The cysts, as anticipated, were still there, as big as ever, but there had been no progression. Yes, Jad definitely needed surgery.

He met with Dr. Clary to get options for the surgery, and to set a date. I wasn’t there for that appointment, but Jad’s brother, Tawfeeq, accompanied him. Dr. Clary gave Jad two options: robotic surgery or invasive surgery. With robotic surgery, Jad would only have a couple small scars, but his risks of dying were higher. In contrast, invasive surgery would be less risky, but he would end up with a huge scar, and cold weather would cause him pain going forward. Dr. Clary let Jad choose, but made it clear which was the safer choice. Jad chose the invasive surgery option.

Surgery was scheduled for November 10, 2011.

You may wonder how Jad and I were feeling as the date approached. It’s interesting. Jad and I were never really that scared. We both knew everything was going to work out. We even went into it all with a positive attitude, looking for the benefits for our family. For example, here is my Facebook status post from November 4, 2011:

Ah, I love my family so much! I can't wait for Jad to come home tomorrow. Then we'll be together every day for at least a month while Jad heals from surgery, which is next Thursday. I'm sure this experience will only bring us closer.


                A picture of our happy family just a couple weeks before the surgery.

November 9 arrived, and I asked for my friends and family to pray that Jad’s surgery would go smoothly the following day. I received an outpouring of support, love and prayers. My friend, Jada, put a post on Facebook that brought me great peace. She said:

Much love to Jad and the entire Al-Bjaly family. God has an army of angels to watch over you all. I pray with all my heart that His grace and mercy will be with you and that you will have peace throughout the entire process of surgery and recovery. Much love. Let me know if you need anything.

We went to bed that night ready to face the day. We had to be at Duke Hospital really early in the morning, like around 5:30 AM. My mother was an angel to come to our home before we left, and take care of my sleeping children. She would get Casey off to school and then bring Rigel to the hospital to wait with me until the surgery was over.

I remember riding the elevator together when we got to the hospital. We were going up into the unknown. We had only been married for less than two years, and here we were, going through something so serious, something we never would have expected. After Jad was prepped for surgery, I was taken back to wish him well and give him my love. The anesthesiologist said I needed to give him his “goodnight kiss.” I did just that, and then turned to leave him in the surgeon’s hands.

It was amazing how many people were in the waiting room. They were all waiting for a loved one to come out of surgery. My mom and Rigel were with me the whole time, and we watched people. We even had a conversation here and there. I was never afraid. I was a little impatient, though, especially as the four-hour mark went by. He should have been done with his surgery by then. The minutes kept ticking, and I yearned to hear my name over the loud speaker to come get an update. At one point, I did go up and ask. The person at the desk inquired with Dr. Clary for me, and he just said the surgery was taking longer than expected.

Tick tock. Tick tock. Late in the afternoon, Jad’s mom, Salma, aunt Rania, grandmother, Nada, and uncle Hani, came from Kinston to sit in the waiting room and show their support. They brought lots of Arabic cookies. Aaron came to visit too.

After about eight hours, I got called up to the desk. The surgery was finally over. I gave a huge sigh of relief and contentment.

Dr. Clary called all of us into this office to explain what he had found during the surgery. He said that he removed a mass about the size of a football from Jad’s body. The cysts had been attached to Jad’s diaphragm and gallbladder as well. Not only was most of Jad’s liver removed, but also his gallbladder. Removing the cystic matter from the diaphragm was very intricate work, causing the surgery to last so much longer than planned. We were shocked at all this, and even more grateful Jad was alive and well.

My mom and Aaron headed home with Rigel, and I stayed behind with Jad’s family to be able to hopefully see him. After about an hour, I was the first to be able to see Jad. I was a little nervous walking down the long, cold hallway. When I approached my husband, he was moaning and could barely talk or keep his eyes open. He didn’t seem to quite know what was going on. Jad may not have realized I was there, but regardless, I held his hand, spoke sweetly to him, told him I loved him, and sweetly kissed his forehead.

When I was with him, my first feelings were that of sympathy for my poor husband…but then I felt God’s love surrounding both of us. I knew that He was with us, and that Jad’s surgery went well because of faith and prayers, and because Jad had a special mission to perform for the Lord in this life. He would recover, and he would go forward in faith.

It was hard to leave him, but I promised I would be back the next day. Jad’s family members took turns visiting him too. I saw tears as they re-entered the waiting room. We said our goodbyes, and left Jad at the hospital.
He did not remember any of us visiting him that evening. Late that night, though, after I put the kids to bed, I got a phone call. A nurse from Duke told me that Jad had woken up and was asking for his wife. My heart broke a little, and I wished I could be with him. I promised I would be there the next morning.

My cousin, Lisa, yet another angel in this story, came down from Virginia for several days to help watch my kids so that I could be with Jad as often as possible. I drove back and forth to Duke way more times than I ever thought I would in my life during the next six days. Often, Salma came with me. Other times, when Lisa wasn’t able to watch the kids, I would take Salma to the hospital, go home, and come get her later. I wanted someone with Jad as often as possible.

When I first saw Jad that first day after surgery, I was so humbled. Seeing him that way, I realized how much we take our bodies for granted. He needed help with everything – eating, drinking, adjusting pillows - moving at all. As I observed his difficulty, I started to giggle – something I do when I am nervous or unsure. I think the nurse thought I was either really crazy or really insensitive. I actually was a little alarmed. I hadn’t expected him to be so bad off.

Jad told me that the previous night he had a dream. I won’t recount the details, but it was a confirmation to him that there is life after death, and that it was not his time to go.

Throughout the next few days, Jad slept a lot, and I read more books than I had in a long time. He also had to practice walking. The first time I walked with him, both Salma and I helped him, and he literally walked as slowly as a turtle. It was hard to walk that slowly, but I always held his hand.

To quickly summarize Jad’s progress through November 16, the day he went home, here are my Facebook statuses for those days:

Saturday, Nov 12 - For those of you who want an update on Jad, here it is: He will be in the hospital until at least Tuesday. He is lucid, but is still very tired and weak. He is also still in a lot of pain. He has gotten up and walked around a couple times, but it's really hard for him. We were told this is the worst day for him, so hopefully it only goes up from here. He can have visitors any time, as long as they are 12 or older. He is in room 4115 at Duke University Hospital.

Sunday, Nov 13 - Jad was feeling much better today. He isn't hooked up to all the tubes anymore. It is still really hard to get up and walk, and he still sleeps a lot, but he is definitely getting better. Hopefully tomorrow he can get out of the hospital gown and put on some real clothes. I know he's looking forward to it. 

I believe this was the only day Jad saw Casey and Rigel during his hospital stay. My mom brought them to Duke, and we talked to Jad in the hallway. He was still in his hospital gown. The kids couldn’t go into his room, which is why he had to venture out. It was so nice to have us all together, even just for a little while.

Tuesday, Nov 15 - Jad is feeling much better today and after today, no more tubes. He should be going home tomorrow or Thursday. It's still hard to walk and move a lot because of pain, but hopefully that will get better in a couple weeks.

Wednesday, Nov 16 - I am so proud of Jad. I walked into his hospital room this morning, and he had gotten a shower, shaved, gotten dressed, and done his hair all by himself. AND, he is coming home today!!!!

It sounds kind of silly to say I was proud of him for doing normal things, but honestly, after such an intense surgery, the ability for him to do anything on his own was impressive.

Later that day, I was able to bring Jad home. I was thrilled. I had longed for our family to be together again. I remember going to get the van, and waiting by the front for him to come out. I kept looking and looking. Such joy overcame me as I saw him being wheeled out of the hospital. After being assisted into the van very slowly, we started our journey back home and to recovery. I felt bad because I know that he was in so much pain the whole way home, but he tried to be strong. When we got home, it took us several minutes to get him out of the car, down the steps, and down the walkway to our townhome. Each step was a victory.

The first thing he wanted once he got situated on the couch was Jello with pineapple in it. He had really enjoyed his Jello at the hospital. He had been on the “bland diet”, so that was the most exciting food he had eaten there.

The next week or two were very hard on me. I was taking care of my husband and my two children by myself. We so appreciated the meals our friends brought to us, as well as the love and support from everyone. Going up the stairs was really hard for Jad for a while, and he had to sleep sitting up with lots of pillows around him. Slowly, though, the pain started to lessen and the wounds started to heal.


                       The first picture of Jad holding Rigel after his surgery.


                  The family on Thanksgiving Day, not long after the surgery.

Now, Jad is healthy and life is back to normal. We will never forget that time of our lives, though, for we learned so many lessons:

 We knew that the scare that Jad had was a blessing from God, for without it, he may have eventually died from a ruptured cyst.

We gained a stronger testimony of the Word of Wisdom. Jad quit drinking in 2008, when he was investigating the Church of Jesus Christ of Latter-day Saints. He used to drink every night. Had he kept drinking, he very well may have died from his infection, because his liver would have been completely destroyed.

We received a second confirmation that leaving my job was the right thing to do. It had been really hard for me to adjust to not working, but, had I still been working when all this was going on with Jad, I would not have been able to be with him and help him through it. Those times in the hospital, and the weeks following, were such a tender experience for us. I needed to be with him during that time.

We found one more reason that Jad was supposed to live in North Carolina: excellent doctors and surgeons who would take the time to properly diagnose him and operate on him.

We felt so much love from family and friends. We will always remember the kindness, generosity, faith and prayers.

Most importantly, we felt God’s love for us. We knew He was with Jad, that He was always with Jad. This was all part of the plan, and He prepared a way for him to survive, from moving to United States, to joining the Church of Jesus Christ of Latter-day Saints, to moving to North Carolina. This trial he faced was only a test. It would make him stronger, and was for his good.

Maybe it is a good thing Jad has such a large scar. It is a constant and profound reminder that miracles do happen.





***If you would like to see pictures of Jad's liver, see below. If you get queasy easily, you probably shouldn't scroll any further. Enjoy!***






































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