#TellUsAnything: My Daughter’s Bout with Lupus

#TellUsAnything: My Daughter’s Bout with Lupus

We live our lives everyday, always assuming that we won’t be the one! It happens to everyone but us. I don’t have Lupus, and even if I did have it, it couldn’t kill me, because Lupus doesn’t kill. Wrong!

This is a story of my precious daughter, Brandi L. Reyes, age 10, and the savage disease of Lupus.

Brandi loved life more than anyone I know. She was full of  life and her beautiful personality was so genuine. She was the person I could never be. She was kind, caring, humble, and extremely good hearted. Brandi was really a beautiful girl and she had a true innocence about herself.

I can tell you that we all live our lives trying to say, “show and give true love to one another.” For Brandi, this came so easily. What seemed so hard for me, was so normal for her.

Brandi was an angel in disguise and this is her story.

On the morning of June 28, 2007, I arrived home from the university at about noontime. What seemed to be a typical, normal summer day in San Antonio, was about to change for our whole family.

Like usual, the girls were sleeping late. I called out for the girls to come down stairs. Brandi, our youngest daughter, soon approached me and said, “Mama, you’re home already?” She also mentioned that she did not feel well.

Brandi had always been a happy and healthy child. She loved arts and crafts, playing with her Bratz dolls, Disney Fairies, and Littlest Pet Shop toys. Of our three children, she was always the most energetic. She seldom complained about anything, so I knew that she wasn’t feeling well.

I thought to myself, “maybe it was something she ate last night that didn’t agree with her.” But as I walked closer to Brandi, I noticed her eyelids were puffy (swollen). I thought that perhaps it was an allergic reaction of some kind and offered her Benadryl, hoping this would take care of the problem. She did not complain the rest of the day.

The next morning when Brandi awoke, I noticed her eyelids were still swollen, and she was still feeling nauseous, so I decided to take her to the doctor.

Once we arrived at the doctor’s office, and after a short wait, the doctor began to examine her.  The Doctor noticed that Brandi had gained a good amount of weight and continued to examined her ankles for swelling and fluid retention.

Something didn’t make sense. I assumed it was an ear, nose, and throat virus, but soon the doctor mentioned that he needed to draw blood.

The next day, the lab work was ready and the results were in. The doctor said that the lab work showed that her kidneys were leaking protein, and that she should see a kidney specialist.

I called a specialist and scheduled Brandi for the first available appointment, which was not until July 12, almost two weeks away. During this two-week period, I kept taking her back to her pediatrician to check her blood pressure and weight, but she was loosing weight because she was throwing up everyday.

During this wait, we were extremely concerned about Brandi’s health. We called back to get a quicker appointment but there was nothing any sooner. It wasn’t until July 10 that the doctor finally prescribed Zophran, which is a nausea medicine that is given when chemotherapy is administered.

This medicine helped, but we still had an appointment  to see the specialist in just two days. Throughout this constant back and forth, my husband and I were extremely worried.

Finally, the July 12 appointment came and we met with the kidney specialist, who ran more extensive blood and urine tests on Brandi. A more precise test, known as the ANA test, would give us a good picture of what Brandi may have.

The kidney doctor asked if Brandi had experienced any unusual symptoms that would lead to Lupus. We told her “no, the only thing Brandi was doing was throwing up bile.” She asked if anyone in the family had ever had  Lupus and we again answered, “no.”

She confirmed that Brandi was very sick and that she was showing patterns and signs of Lupus. When Brandi heard the doctor say this, she suddenly stopped and starred into my eyes and asked, “what’s Lupus?”

After more consultation, the doctor sent us home and asked us to wait for her phone call. She needed to review more numbers and said that she would call us very soon.

On our way home, I received an urgent call from the doctor saying, “Your child is very sick. You need to turn around and get her admitted into the hospital immediately. We need to perform a kidney biopsy ASAP.”

Brandi was admitted that evening to Christus Santa Rosa Children’s Hospital. I was in shock and really became alarmed. We had waited so long to get some answers and now that my daughter was being seen by a kidney specialist, everything had become extremely urgent.

At this time I contacted my husband, David, who had left earlier that morning for a military exercise. Prior to him leaving, he was concerned but thought the worse Brandi may have was a kidney virus.

Finally, I spoke with David and told him the situation and what had transpired. Immediately, he began his journey back home and by midnight, he was in the hospital with us.

On July 13, Brandi’s biopsy procedure was performed.  Aside from some backache, Brandi was okay. Later that day, she was seen by a Lupus specialist in the hospital who confirmed the initial prognosis of the disease. Just as it was a shock to Brandi and us, we started to realize that our daughter actually had this disease.

Lupus strikes females more often than males. Most Lupus signs and symptoms are fatigue, joint pain, and swelling. In Brandi’s case, she didn’t have much of those symptoms. However, the unexplained vomiting and the loss of protein in her urine are signs of kidney failure due to Lupus.

Brandi’s Lupus was becoming more aggressive. It was attacking the kidneys and there was concern that it could attack her heart and brain. Both doctors agreed that a strong treatment plan that included chemotherapy and a regiment of steroid medication was needed.

Brandi received a low dosage of chemo on July 15. She did well but was starting to retain fluid in her limbs and stomach. On July 17, she received a dose of Albumen, which was to release some of the fluid in her body. It worked and she looked almost normal again.

Throughout the next two weeks, her kidneys were almost 100% repaired, but the fluid retention in her whole body was back again.  Also, throughout this period, she developed a small abscess like infection on her upper leg that later grew a tiny bubble, which turned out to be a staph infection. She was treated with IV antibiotics and was doing great.

On July 29, Brandi was discharged from Christus. She was thrilled as she stepped out of the hospital for the first time in more than three weeks and immediately thanked God for the fresh air, even thought it was incredibly hot outside.

Brandi was finally home. She had gained weight during her stay in the hospital due to the steroids and fluid retention, and her face and body looked swollen.

The weight gain were side affects from the steroids. In order to avoid any further weight gain, the doctor put Brandi on a low sodium, low liquid diet. Her liquid intake was limited to 12 ounces per day.

She was also prescribed many medicines to include three blood pressure medicines twice a day, steroids, Lasiks, antibiotics, baby aspirin, calcium, and iron.

Brandi began walking slower and bit more wobbly because of her weight gain, so she chose to spend her entire day downstairs and wouldn’t return to her bedroom until it was time for bed.

Even bending over to play with her dolls became harder but Brandi didn’t complain. She was never upset about her situation. I know she was not happy but she was trying to except her illness. She just spent her days drawing, playing Disney bingo, DVD’s, and other board games with the rest of the family. And of course, Daddy had to buy her “The Price is Right” game on DVD, which we played lots during her home stay.

Brandi’s second chemotherapy session was on August 10 and she was given a much higher dosage. On the bright side, she no longer had the staph infection and her antibiotics were finished up.

After this chemo session, Brandi began to start loosing hair, but not enough to notice any bald spots. Still, she didn’t complain but she began to sleep more than usual during the day.

Her appetite was great and she would be hungry at meal times. She was still swollen and was still on the restricted diet.

Ten days later, on August 20, she had a follow-up visit with the kidney specialist. Brandi was prescribed another antibiotic because the specialist found that her white blood cell count was extremely low and she could very easily catch an infection.

The next day, Tuesday, August 21, Brandi complained about a pain in her legs. I noticed two red, quarter-size bruises on the calf of one leg. The red bruises were about two inches apart. My husband mentioned that he had noticed them when Brandi got out of the bath tub on Sunday.

We began thinking that the bruises might be something serious so I called the doctor and she told me to take Brandi to the emergency room because the bruises were red and this might mean that it may be an oncoming blood clot.

I took her to the hospital by 6:00 p.m. The on call emergency room doctor said the bruises were not blood clots, but were discoloration bruises from her weight gain. We explained to the doctor that the red bruises were extremely warm on the immediate area.

To this day, my husband and I hurt from the misdiagnosis the doctor gave us. The red underlying bruises were not blood clots, but MRSA, a staph infection. We didn’t challenge the doctor’s diagnosis.

We were, in some way, relieved that it was not a blood clot but we were fooled. It was something much more horrible!

He prescribed Tylenol for the pain before sending her home. The pain in Brandi’s legs got worse and by 10:00 p.m. that night, she started running a 101 fever.

I immediately called back to the emergency room and they told me to keep watching her and that I needed to give the Tylenol enough time to work.

Throughout the night I applied cold packs to her legs to hopefully relieve the pain, but it didn’t help.

At 5 a.m., Wednesday, August 22, our whole world turned upside down. Brandi was in so much pain that I decided to take her back to the ER. This time I packed a bag, determined that she would remain at the hospital for observation and treatment.

By the time we arrived at the hospital, the bruises had grown about eight more inches and were now purple. The hospital staff said Brandi had developed Cellulite’s, which is an infection.

She was administered a high dose of antibiotics and taken to the Intensive Care Unit (ICU), where doctors began working on her. Her body was swollen to the point that the lab tech had a problem finding her veins to start an IV.

Everyone was now anxiously working on Brandi.

“Mama, I’m scared. I’m cold,” Brandi called out to me. “It’s going to be okay, Baby,” I responded, and stepped outside the room to speak to the doctor.

While outside, I heard strange sounds coming from the
room. My husband, who was with her, ran out of the room and yelled, “She needs help!”

Brandi was having trouble breathing and had gone into distress. She was immediately put on oxygen.

“Mama, I don’t want oxygen! I’m afraid. I don’t need oxygen I feel ok now.”

“Don’t be afraid, Brandi. God has a plan for all of us. You will be alright,” I told her.

“Mom, I am hungry.”

“I’ll see if I can give you something to eat later,” I said, knowing that it would be a while before she could eat.

She was going to get a blood transfusion, More I V fluids and I V antibiotics. Immediately, Brandi was moved upstairs to Intensive Care. The doctors told us that Brandi would need to be sedated. She would be needing help to breathe and a tube needed to be inserted.

While sedated, they would place the other ports needed to induce the antibiotics.

I can’t tell you how much recanting what happened still hurts from what we went thru. We were asked to leave the room for about two hours and when we came back, she looked very different.

She had a tube in her mouth and many medical I V’s attached to her. She couldn’t talk anymore and slept during the night.

My husband prayed and prayed. He feared the doctor’s briefings. He wanted the breathing tube out of her throat. He wanted Brandi conscience again.

During all of this, I remained at Brandi’s side, never leaving the room unless ordered to. On the morning of  August 23, 2007, the doctors told us that Brandi was not urinating enough and that they were considering dialysis later in the afternoon.

They also advised us that the sedation was going to be reduced and that we needed not to excite her.

I leaned over to Brandi and said, “I love you, Baby. I love you, and I know you love me, too. But I know you can’t say it, Brandi, so I’ll say it for you, ‘I love you, Mama.’ I know you love me, too, Brandi.”  Brandi nodded twice.

I stepped back a bit as her father and other family members talked to her.

Then about 4:00 p.m., when it was Grandpa’s turn to visit for a few minutes, alarms began buzzing. The noise was coming from Brandi’s heart machine. Doctors rushed into the room, hovered over Brandi, and began performing resuscitation procedures.

Grandpa told me later that when he walked in the room, Brandi lifted her head and opened her eyes. Just as fast as this happened, her eyes closed back and she fell back onto the bed.

Forty five minutes later, one of the doctors approached and told us that he was sorry. There was nothing more to do.

I grabbed his shirt and said “No doctor, please don’t tell me this. Please don’t,” and immediately, I heard one of the staff members who was attending to Brandi, raise his head and say, “We have a pulse!”

The doctor left me talking and started instructing the staff. The doctor and ER staff continued to work on Brandi for two more hours.

Finally, the kidney specialist arrived and told us, “They’ve done all they can for her. Brandi has fought hard, and it has taken a toll on her small body. She cannot take much more of this. You need to make a decision as to whether to continue to resuscitate her or let her go.”

My husband, my other two teenage children, and I had to make the hardest decision of our lives. Our little girl was called home that day to join Our Lord in Heaven.

Her Death Certificate reads, “Cause of death, Septic Shock, Cellulite’s, and Lupus.”

The infection had consumed her whole body. I do not know what kind of life Brandi would have lived if she had survived. We were told that she had one of the worst cases of Lupus Nephritis.

I have to find comfort knowing that she is in a better place. “Asking myself if God took her because there was much suffering ahead, I don’t have an answer. What I can honestly tell you is that one day my girl is jumping, laughing and playing, and the next day she has kidney problems, the next week she has LUPUS, the next month she has an infection, and in two days she is gone.”

It is very hard to believe, as no one in our families have any serious illnesses. We still can’t figure things out.  My only answer is that God wanted her this bad and that he needed a good helper. And this would be like Brandi, an angel working hard in heaven, looking down at us and wishing we were there with her.

She loved us very much. She loved all our family, her teachers and community. This she will miss when she sees us. But she is in a better place and I have to convince myself every day of this, as I miss her dearly.

“I love you and miss you very much my darling daughter, BRANDI.”

During Brandi’s ten years here on earth, she was extremely humble and very sincere.

As a young girl, we always noticed some extra belly fat but assumed it was baby fat. Lupus is normally not so intense, it does strike young children, primarily females.

Signs of fatigue and body aches are normal symptoms.  Brandi, however, skipped these symptoms and went straight to renal failure. Despite saving her kidneys, extreme chemotherapy made her susceptible to infection.

Lupus is a killer. Early symptoms and ANA tests can help to pinpoint the severity of Lupus, but never underestimate this disease.

P. S., Please live life to it’s fullest, in memory of Brandi L Reyes, 1 April 1997 to 21 August 2007.

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