Sick to...real life

Almost 2 years ago I was sucked into this new unknown world. A world of spoonfuls of applesauce every night with crushed pills on top. A world of hospital trips, timed meals, and blood counts. I have to arrange schedules according to doctor’s appointments and spinal taps. I need to be aware of borderline low ANC levels and activities Yousuf is engaged in or sick kids who he is around, and whether that is a threat or not. I have a middle child who demands a spoonful of applesauce along with Yousuf’s (minus the medicine) almost every night. The spinal taps were tough but I was used to the procedure and the pacu waiting rooms. I’m dreading his upcoming spinal tap by remembering the last. With other kids growing up, every day normal life is already difficult, now I have to juggle Yousuf’s treatment along with it.

Last doctor’s visit Yousuf was infused with his vin cristine in a new way. The clear liquid has been confused with the other chemo drug, methotrexate (which is shot into yousuf’s spinal cord during spinal taps). If vin cristine is injected into the spinal cord it is fetal. Some hospitals have been known to make the mistake between the two drugs. They now put the vin cristine in a clear square bag and hold it above the nurses head and let gravity infuse the medicine into his port-o-cath. A tad bit more time consuming but better on the body, I assume. I was ready to grab a snack in the eating lounge but had to step over a stack of towels covering throw-up. Once I sat down to munch, back in the T.V. room, the little girl next to me vomited all over herself. This medicine doesn’t belong in their bodies, I thought to myself, but neither does cancer.

No matter how drastic and sucked up in the sick world I am in the hospital, real world issues and life take over as soon as I exit. My other children demand my time, love and attention. They don’t cut me any slack knowing that Yousuf’s next spinal tap haunts me or that I was stuck in the hospital all day dodging piles of throw up and shedded hairs on couches. I have to stretch myself out…just as all the other parents in that waiting room have to do. A little more than a year to go. I must get through it.

Lawyer Business

Patrick had called me back to meet with him and a couple other lawyers. I started to get excited thinking that was great news…and it could be. I entered today’s meeting with mixed feelings. After I had done some research on my own I realized that a lady had fought against an incinerator being placed upon the site in order to rid the chemicals that way. The lady raised the issue to protect our air, of course. After having it approved and spending 2.5 million dollars to place part of the incinerator on the land it was never done due to opposition from residents. I can’t even imagine that they approved such a thing. They ended up burying the contamination under 45 feet of clay. In 2010 it leaked but not causing an “IMMEDIATE threat”. Nice.

When I asked someone if they would allow the lawyer to contact them they said they could not help since they signed a waiver, like everyone else in this neighborhood, saying that they would not sue Lennar for any property damage or anything regarding the Brio Site. According to what I’ve heard from home owners they were open and clear regarding the Brio Site. One person checked with the EPA to ensure it was actually safe to live in this area. Well, after learning about them lowering the bar on the standards of what is considered safe for us I can’t help but not trust anyone now. I knew that whatever had to be done by a lawyer had to be deep and would take its risks.

Today’s meeting was informative. We met with Patrick and one other lawyer who works mostly on leukemia cases. Afterwards, I’m really wondering why he came in the first place. He asked a few questions and explained why our case was so difficult. When Brio Site was going on people were getting paid. A lot. Some people even would race to get a home during the litigation to turn around try to get part of the money. It wasn’t just a clean cut case. It was a mess, he said. For the subject to open up again they would probably pay a lot of expensive lawyers to stop this from happening. They want to keep a cap on it before more cases start cropping up again costing them even more money. Which means for us more investigation and deeper understanding of Brio…and more money. The lawyer said he would be happy to do that but eventually he wouldn’t have a place to live. So the saying “money talks” is applied this case, unfortunately. Keith, the “leukemia lawyer” said he wanted to come talk with us today but will not have any part in this case. He, of course said this after telling us he believes this is why our son got cancer. I almost cried but hid it rather well. Patrick said he has worked with some lawyers for a long time who turned out to be lawyers who were directly involved in the Brio Site case. He will be contacting them to see if they could be of any help.

My new mission is to find a home far away from this place.

Erin Brochovich ll

I’m used to being second, I guess….second child, second wife and now Erin Brochovich the second. I wish to achieve similar successes as her. I met with the lawyer yesterday and it went pretty well. As we were walking to his office I was nervous but became comfortable as soon as he entered the room. The excitement on what he was about to say was all I had left in my body.

Basically, he was saying that he will be investigating the Brio Superfund Site, try and figure out what chemicals were disposed of there and if they are linked to the type of Leukemia Yousuf has. By May 13th he will decide if he will take the case, but we are free to get another lawyer during that time. Meanwhile, I need to be gathering as much information on the neighbors that were stripping up carpets and replacing it with hard floors to rid their child’s chronic coughing. I need to gather medical records on my kids chronic coughing and Omar’s rare genetic disorder. I will be busy and obsessed about this until we reach the end.

The lawyer also mentioned how, unfortunate it is that the people who fund these industries are also the people who run the country and have control on the standard of what is acceptable. Environmentalists, who have lower funding and who would also put a much stricter guidelines on these issues, have no control. Big industries couldn’t care less on the few lives that they may sacrifice (such as my son Yousuf) at the cost of millions and millions. At this point you could see the thick tears lining my bottom eyelid. I struggled to maintain my composure and from keeping myself from slamming my hands on the larger oval wooden table and screaming.

Please make du’a (prayers) that we have a case, win the case and make a difference somehow to save anymore families from this trial. Again, if you live near the Brio Superfund Site (Dixie Farm Road/ Beamer/ Scarsdale area) or know of someone please contact me.

Brio Superfund

By the end of Yousuf’s treatment, in about one more year, I would love to have all the answers. I would love to know exactly how and why he got sick and how to prevent it for others. Unfortunately, it will probably always remain a mystery. Survival is of primary importance, next for him to stay healthy, but with all we've gone through, I want more. I have become aware that just half a mile from my home there is an empty lot of land that used to be an entire neighborhood called South Bend and an elementary school named Weber Elementary School. They were completely terminated after realizing they were built partially on and right next to a witches brew of toxic waste dumps. Babies born with birth defects, cases of leukemia, miscarriages and other illnesses were discovered. A father and previous resident of that community, who also worked for one of the chemical plants responsible said,

"As it turns out, the field actually belonged to a defunct chemical disposal company called Brio Refining Inc. Over the course of nearly 30 years until 1982, a number of companies had dumped highly toxic byproducts from Houston’s petrochemical industries into the ground with no reliable means of containment. The site was so toxic that the EPA put the Brio Site on the Superfund list, a federal program that came out of the Love Canal scandal of the late 1970’s, marking Brio for toxic waste cleanup".

The story has become overwhelmingly sad for me to research. Do I think that this is the cause of Yousuf’s cancer? No. Do I think that it played a part in him getting cancer? Yes, I do. I don’t believe that any one “thing” can be responsible for something like this. People can argue then, why aren’t their kids getting sick, too? I don't think it's that simple. I live in a predominately Asian community, which is not high on the list for getting childhood leukemia….at least not yet :(. Childhood cancers are higher in white and Hispanic populations, Yousuf is both. Could it be that added factor? I will never know but I will definitely work on eliminating reasons that I CAN for him to be cured such as the healthy diet and living in a safer environment. The other aspects I will just stay actively aware of the statistics.

The Brio Superfund taught me something else…It’s important to be active in one’s community. My goal is to ensure people know of Yousuf’s cancer and that cases of it are still existing in nearby communities. I will not let this whole experience of holding my son down with all of his kicking and screaming on a biweekly basis just pass…justice for all, as much as I can do.

If anyone knows of anyone living in this neighborhood or went to Weber Elementary School please contact me at ummyousuf@gmail.com or please post a comment. I would love to have more knowledge of the Brio Superfund.

http://www.khou.com/news/local/Leak-brings-new-concerns-at-Brio-Superfund-site-95662764.html

National Social Worker Month

Serene has had a really bad cough since the first week she was born. Six months later she’s still coughing. As of now it is still a mystery. We are running all sorts of tests on her as well as giving her breathing treatments, which seems to be working so far. Admittedly, I still have a habit of thinking of worst case scenarios. After getting blustered by the news of Yousuf and even Omar, with his (not harmful) yet rare genetic disorder, anything rare becomes possible. Before they rarely even crossed my mind. I was at Texas Children’s Hospital with Serene for 4 hours trying to find an answer. I was only sent home with a baby with two ear infections and completely clear lungs…Alhamdulilah. Good news isn’t always the best news at the time when trying to find a solution, though since the problem with her chronic cough still exists.

I got home from the ER at 11:30pm and was due back in the morning at TCH for Yousuf’s round of chemo-therapy. It wasn’t even a matter of dispute that his father was happy to take him for me, alhamdulilah. Carrying Serene from building to building in the ER that night was exhausting but the final walk back to finally leave I looked up and on the outside of the building hung a banner: “March is National Social Worker Month.” Next to it hung another smaller banner saying: “Thank Child Life!” I remembered Dayna, the child life specialist who is always there in the cancer center helping both of us cope through all the different procedures. She always used to make sure Yousuf was stocked up on medical supplies to perform the same exact procedures on his teddy bear. It was therapeutic for him and allowed Yousuf to understand what he was going through and why. Even now, he opens his mouth wide every night to get that spoonful of apple sauce with sprinkled crushed medicine, and he asks, “This is making me better right mama?” By the will of Allah (swt) prayer, healthy eating and all the medicine taking will cure him, insha’Allah. Yousuf has been in remission for 1 and 9 months, so now we are just anxious to say the word CURED…and even better “long term survivor” old in his age, insha’Allah.
Though it was late I still managed to stop by the store and buy Miss Dayna some beautiful orchids and a Dr. Seuss Thank You card along with it.

Thanks to Child Life Specialists that walk the floors of Texas Children’s Hospital, we are making it through this test and even have made it enjoyable at times.

Spinal Tap LIVE

Yousuf claimed that the fish decals, decorating the doctor’s office, were swimming after his spinal tap and before the “funny gas” wore off. I wasn’t sure to laugh or cry. Dr. Margolin was right; the wait to get the spinal tap in the clinic was way shorter. It was also less hectic not being forced to go back and forth between the surgery floor and the cancer floor. I’m still not sure which one I’d prefer.

Yousuf went on his glucose fluids before his spinal tap while being deprived other drinks or food. Despite all that trouble Yousuf portrayed the same sick symptoms as before while fasting. He began to look pale and acted lethargic. I immediately told the nurse hoping she could speed things up. Cara (the nurse practitioner) came and did her routine examination and prepped him for surgery. Everything was new for me so I wasn’t acting as cool and confident during instructions. I didn’t know what was allowed or not allowed during the procedure…or if I was even allowed to be there.

Cara and the nurses carried on as though Yousuf was just getting another shot. The child life specialist was by our side dazzling Yousuf with a tiny DVD player and gentle voice as he began to drift into another world. Still awake Yousuf didn’t seem to care what was going on around him just as long as the T.V. remained within eye level. Everything appeared to be in slow motion as I witnessed all of this for the first time. Cara began to draw a smiley face on Yousuf’s lower back then rubbed a ton of brown fluid all around the area. I wanted to ask so many questions but my focus was on Yousuf ensuring he would be okay; if I appeared worried than Yousuf would feel it. Out came the long thick needle, but my eyes were mostly on Yousuf. Just as she penetrated his back Yousuf screamed and squirmed. All the nurses came around to hold him down in order to continue the procedure correctly. I reassured myself that Yousuf was too drugged and began with my questions…”Why is he screaming? What does he feel? Are you sure it doesn’t hurt him?” The child life specialist was there calming me down more than him. She explained that they feel a lot pressure in the lower back, not pain. However, it’s not normal to feel that amount of pressure there so it scares some kids. What was even in more slow motion was the pulling out that gigantic needle from his back. The needle was long enough to reach through to his stomach. As soon as the needle was pulled out I gasped and started crying, “I don’t like it this way!! I don’t like it this way! I don’t it the other way. I DON’T like it!” Cara looked up, as she was still crouched down with her head still near the procedure area. I felt as though she was more amazed by my tantrum than that of Yousuf’s.

Immediately following the procedure Yousuf continued lying on the hospital bed as in a trance. He was drooling and kept raising his head trying to figure out what was going on then would plop his head back down. That’s when he looked a bit amazed at the moving fish and revolving door he could have sworn didn’t exist just moments ago. The Child Life Specialist reassured me that his behavior was within normal and to give this method another try, maybe upping his dose of anesthesia next time.

It was then that I was reminded how hard the situation really is. With everything a routine now, watching what was done in the operating room usually behind my back really affected me. I began to calculate just how many more spinals we have left. I was too exhausted to do math. I was a ready to call it quits for the day but wasn’t aware of the full day ahead of traffic and two other crying kids demanding my attention and love.

By the end of day I sat in the kid’s room as they were drifting to sleep, head in my hands, and cried. Omar snuck out of bed and gave me a kiss. I calmed down a bit and skimmed through my missed calls and messages. I held the phone up to my ear as I listened to my voice messages still sniffing from all the crying. “This is Niki, from Make-A-Wish foundation; we spoke about a month ago regarding your son Yousuf. I wanted to let you know that Yousuf is eligible for a wish.” Yes, I memorized the whole message she left. I replayed it at least a dozen times. I began laughing and crying. I knew it wasn’t a light at THE END of the tunnel but a spark of happiness to continue my journey through.

A Prickling Singer

Have you heard anything that could drown out the powerful voice of an opera singer? I have. Today during Yousuf’s blood check the cancer kids were visited by a Houston Opera House singer. I was mesmerized as this woman came and sat down with all the children on the 14th floor. They sat in their chairs surrounding her in a circle. She sang about red. She sang about blue, orange and yellow. I never thought that the colors of the rainbow could make my lip quiver like that. It wasn’t just the amazing voice without instruments or back ground music. It wasn’t just the echoing of her voice so loud it ricocheted all through the halls on the floor but that this amazing woman came to sing to my child. She came to make a struggling family smile.


As usual the buzzer went off notifying us that is was Yousuf’s turn. His dad tapped on his shoulder and pulled him away from the circle. He left with ease and quite calmly. I couldn’t hear what he was asking but, from experience, I’m sure he was asking whether it was the “finger” one or the “port” one. I have to admit that as I had to prepare to give blood with a finger prick, I cringed internally right before. It’s something about the anticipation of pain that is more stressful than the pain itself. I continued watching the lady interact with the kids so enthusiastically in rhythm and in beat. I winced as I heard Yousuf waling, as if trying to give some background music to the lady’s performance. I felt tears start to come but instead just thought to myself, jokingly, that perhaps they came to look for future performers. After all, what better place to look in than that of a place who exercises kids lungs the most.