Desired Remission

Looking Forward

2012-01-27T23:00:00.000-08:00

Yousuf held his shirt up so a doctor, that we happen to know in our community, could take a look at his port-o-cath. He was rough housing a bit and banged it pretty hard on something. It looks red and hurts when it’s gently touched. Insha’Allah, it is just bruised a bit and will be fine but we won’t know for sure until they access him and try to get a blood return. One of the first questions the doctor asked was what his platelet count was. I quickly answered about 220, which was just taken on Wednesday. I ran through my head all the other numbers…hemoglobin 10.2 and ANC 1.0. Then I thought to myself wow, I wonder how many people know exactly the different blood levels are in their kids body. Something to look forward to:

…The day that I don’t have to memorize them.

Hearing the numbers one day and making the same face of confusion that everybody else always gives me.

Tickling Yousuf without being extra careful not to come across his port.

Not hearing Yousuf ask me which drug will it be this time and hear a 6 year old pronounce words like antibiotic and pentamidine.

The only harmful substance affecting his blood will be large amounts of candy or soda.

Not measuring the acceptability of a place or thing by the amount of germs that it carries.

Not hearing friends or family tell me they want to visit and giving me all the current health statuses on themselves and their kids to reassure me that it’s okay.

Yousuf favoring another book at bedtime other than “Little Critter goes to the Hospital”

Not having the Texas Children’s Hospital message playing in my head all the time that calls me every week saying, “Hello, this is Texas Children’s Hospital with a reminder to confirm an appointment for YOU…SEF, with your doctor on Wednesday at Texas Children’s Cancer Center on the 14th floor of the Clinical Care Center…then it repeats it again.

I look forward to hearing new common words like “cancer free” and “Long term survivor”. I also look forward to being on the other side of the waiting room. While other’s dazzle us with puppet shows, crafts, and performances I look forward to opportunities to making other sick children and their families smile through all the above and even more. Right now I’m a little too busy going through it myself but, while one day our cancer will be history, we will never be! We’ll just be on the other side waiting for our friends to join us.

The Smile Specialist

2012-01-08T22:00:00.000-08:00

I've been thinking lately that, by the end of all of this, I should get some sort of certificate of completion. I've learned a lot in these couple years and am not finished yet! Despite all the knowledge, the deepest questions remain unanswered on the how's and why's. I can only guess and allow it to make me grow. But Yousuf and I are not the only one's gaining a growth spurt of inspiration through all of this.

Many of our trips were accompanied by Yousuf's older sister. I don't like to call her his half sister. No matter what people recognize her as, she is still fully his sister in relation and at heart. She, too should be recognized, at the end of this entire course, for all her support and experience she's gained. She was the first person Yousuf sat in her lap during a port access and didn't cry. She witnessed the first spinal tap in the clinic (not the operating room), and was present for many others. Although, the experience itself can be devastating and sad. We've managed to enjoy our trips to Texas Children's Hospital when she came along. She's joined in with making cookie and fruit baskets for the other patients as well as filled our doctor's room with laughter. One particular experience she saw Yousuf go through was with the Child Life Specialist. These ladies impress us all on how they can sooth the most stressful babies and kids. It's inspirational and an honor to be among those whose job is to purely make someone smile and wipe away the tears. Here are her words....

I step down from the van,
with a wailing child in my hand.

It's time for the chemotherapy to start,
but this child shouldn't have to;
I can't bear it in my heart.

While others are enjoying their health,
while others are enjoying their wealth,
never asking or giving a care,
or wondering if sometimes life isn't fair,

They seem to think that everyone is fine,
but what about this little brother of mine.

It was only at the tender age of three
that cancer was discovered in his little body.

While sitting on the 14th floor,
my brother and I were in for a bore.

I then saw a little boy who caught my attention in a blink of an eye.
Although none of the kids were happy, and all gave a sigh,

This little boy was particularly expressionless.
I approached him- asked if I could sit and rest.

He stared at me with a blank expression,
then turned back to the PlayStation.

I thought this kid was as cold as ice,
but that's when I saw he could actually be nice.

A sweet, young lady walked in through the door,
she was someone all the children seemed to adore.

Across the boy’s face spread a huge, toothy smile,
one you could say was as wide as a mile.

He started to talk, laugh and excitedly shout.
He only talked to this one lady about…
everything he kept inside,
never speaking until she arrived.

This one special person made a difference in many children's lives,
earning a humble salary but more than a million high-fives.
I've been inspired to become a Child Life specialist
and make every sick child an optimist.

Although life may be tough,
I hope that one day I'll be enough.

So as days of the years go by,
and I ask myself daily, “What have I accomplished so far?”
I hope to say, “I made a little child's day!”

Medicine Mix-up

2011-07-23T21:41:00.000-07:00

Despite it being over two years of Yousuf taking medicine, mistakes still happen. I’m pretty much on target when it comes to which pill on which days, which week he has his chemo vs. his blood counts, but I made a huge mistake the other day. While sprinkling crushed steroid on top of a spoonful of applesauce, I had company that I was visiting with. While I was standing in the kitchen, holding the spoonful of medicine, chit chatting away Omar came in front of me and opened his mouth wide. Yes, I stuck the whole thing in his mouth. I immediately picked him up, held him over the sink squeezing his mouth screaming to spit it out. He did manage to spit out some, but I instinctively stuck my finger down his throat to throw up the rest. After I finished gagging him I paged the oncologist on call right away. I was consoling poor Omar while waiting for the return call, only wondering if what I did was good enough or we would be taking a trip to the ER.

Alhamdulilah, they returned the call pretty quickly and said it was even alright if he had swallowed the entire dose. It was also okay if Yousuf had missed his dose because of that. Deep breath in…and out Alhamdulilah. Lesson learned. Future caution will be taken.

Sick to...real life

2011-05-13T20:29:00.000-07:00

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

2011-04-19T20:37:00.000-07:00

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

2011-04-14T07:54:00.000-07:00

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

2011-04-04T08:20:00.000-07:00

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

2011-03-25T21:32:00.000-07:00

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

2011-03-22T09:25:00.000-07:00

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

2011-03-19T20:34:00.000-07:00

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.

Second Year on Maintenance

2011-03-03T21:18:00.000-08:00

I was holding Serene in her little cute dress with her bare feet dangling down. I glanced down and saw red dots on the top of her foot. As soon as my eyelids opened a second time to see her feet I looked at it as if it were identical to the tiny red dots called petechiae that were behind Yousuf’s ear when he was diagnosed. I became dizzy and my heart started pounding hard. When I looked a third time I took a deep breath seeing that they were just tiny scratches. As a typical 6 month old she likes to hold her feet and perhaps it’s time to cut her nails once again. Just when I started to think I was recovering! I wonder when I will be able to look at a sick symptom and NOT think of the worst case scenerio of it's cause and reason. We started the second year of maintenance late January. This is what I can say about it now…

Counts are high and medicine is increased every 2nd high blood count (about once a month). Yousuf is currently on 6 methotrexate pills every Wednesday, Mercaptapurine every night,6 2.5 ml of the steroids for 5 days every month, pentamidine once a month, and of course the round of chemo every month and spinal taps every 3 months.

During the 5 days of steroids I have made a habit of having some sort of food easily accessible for Yousuf for in-the-middle-of-night cravings, so I don’t actually have to get up.

When Yousuf starts acting more sensitive to a situation….even more so than his usual self I automatically think what time of the month is it and if he just had his round of chemo.

I’ve memorized the hospital’s number, have the valet on speed dial, and know just how to talk to get what I want and who I want on the phone.

When the computers are down the pharmacists will go ahead and prepare the prescription knowing Yousuf’s name and drug he needs.

The pharmacy no longer offers medicine syringes with medicine knowing they have given me at least 30 already.

I’ve not only memorized the “on hold” messages they make you listen to for TCH, but I have memorized it in Spanish, too.

I’ve had a chance to give blood and enjoyed every minute of it…even the pricking of my finger and the needle poke. People kept looking at me weird when I kept trying to plaster the lose band aid on my fingertip, excited to run home and show Yousuf.

A lifetime of always wanting to be at my thinnest I actually would rather stay the weight that is required to give blood.

I took Yousuf to his regular pediatrician and we sort of laughed at Yousuf’s growth chart. There is usually a tiny dot on the chart where his age and weight meet telling his percentile. Yousuf has a solid line due to how many times his height and weight have been taken since 3-5 years old.

I have fantastic judgment on the limit of people that fit in the elevator at TCH …strollers and all.

I can tell his story without crying now.

I still tear every once in a while when a painful memory arises or happy memory that reminds me of how blessed I am to have Yousuf.

When Yousuf gets excited about an item at the grocery store he turns it to the ingredients and asks me if it's junky for him.

I’ve collected about 15 oxygen masks (from surgeries) and started saving the empty medicine bottles. I’m thinking art project.

Despite all the hospital visits, lumber punctures, and finger pricks Yousuf still seems to act and display the most normal typical 5 ½ year old behavior, both in his mental and physical functioning. He might be above average in sweetness though. This, I must admit, I am not thankful enough to Allah (swt) for.

Mother Knows Best!

2010-12-06T20:25:00.000-08:00

I don’t know what to call Texas Children’s Hospital other than my home away from home. Yousuf is starting his 6th cycle now (each cycle is 3 months). They always begin with a spinal tap and, of course, the monthly dexamethosone steroid. He’s been improving every month, in regards to, his side effects of the drug. He’s a bit sensitive at times but overall he’s more himself than ever. Last week was his scheduled spinal in the PACU, and he had to fast as usual, nothing to eat or drink. Our appt was 7:20am but by the time he got there he still wanted something to quench his thirst. The routine of his complaining goes right along with his routine treatments. By the time we reached the 7th floor of PACU he started crying and laying in my lap over hunger pains. I told nurses that he needs to be up on the list since this extreme behavior was new. We still waited and waited. Yousuf began crying and telling me he was scared. By that time the nurse came to get him for his “operation”. I had to carry him he was so weak. Right on time when we entered the room he vomited on the operating table and collapsed on the floor gagging some more while dangling from my arms like a limp puppet. They began to tell me that the procedure is now cancelled and they can’t do any anesthesia in his condition. Bending with my arms wrapped around his chest and trying to pick up his limp body I cried, “What IS his condition!? What’s wrong with him?” Finally, with help, we got him on the table and one of the nurses kept his head from tilting over and eyes rolling in the back of his head. She kept trying to make eye contact and asked him if he knew where he was and if he could understand her. He nodded his head and we gave him sips of sprite right away. We got him wheel chaired back up to the cancer floor and back to see the doctor, but in seclusion just in case he was at the beginning of an illness. After some fluids and whatever crackers they had available he perked up and was back to normal. Dr. Margolin said due to him acting hypoglycemic we will have him on fluids for any future procedures.

Rescheduled on Monday, (today), we started with the same routine of port access and blood test. Last visit and this visit were his first and second port accesses he didn’t cry during. We celebrated that last time, this time not so much. His fluids were started and we headed downstairs to PACU for his procedure, strolling around an infusion tower this time. The PACU was packed as ever and little brother Omar was enjoying all the toys and play cars to ride in. He also enjoyed yanking Yousuf’s tube connected to his port. Yousuf wailed and screamed at Omar and sat still holding his side. He kept complaining of pain so I asked the nurse to check it out. I’m not sure what they THINK checking it out means but two nurses reassured me it was fine. I told myself I will also have the nurses in the operating room check it. Yousuf was very nervous that I had to drag him in the operating room and sit him on the table. I’m definitely used to his nervousness so I remained calm knowing this behavior was normal while a couple of the new nurses were trying to dazzle him with funny questions. I told him about what his brother had done to check his port. I told him two other nurses checked it but please check it again. I’m thinking since they can’t see anything swelling up and two other nurses okayed it then it must be okay. Wrong thinking. The nurse draped a warm blanket over him and began to entertain Yousuf with more funny questions about cartoon characters. I frowned thinking maybe I didn’t hear him tell them he was cold. Then I saw her sneak the fat syringe of white liquid under his blanket and attach it to the tube connected to his port. I felt very uncomfortable and upset at her technique on trying to trick him. As soon as she pushed it he began screaming. I immediately jumped up and said this isn’t normal. “Why is he screaming? Why is he screaming? Check his port!” By this time the entire syringe of medicine was administered and they said that he can still feel the medicine go in that’s why. I told them “NO, he’s done this a TON of times and he’s never like this.” They finally lifted his shirt and it was as if there was tiny football under his skin on his side. I began screaming at them, “I told you something was wrong! I know my son, I know my son and when something is wrong!” They just stood there dumbfounded and couldn’t say a word. I just cried and cried looking at him with his eyes shut but his arms swinging and legs kicking as the drug did not knock him out because most of it was there protruding from his belly in a liquid ball under his skin. They pulled out the needle and lightly pushed out some of that white liquid seeing, in fact, that most of it was the drug and not just the fluids they had been giving him. “Do you give us permission to put an I.V. so we can get him calmed down in order to deal with this?” They asked still defending themselves from his swinging fists. I said yes as I watched them all hold him down to put another needle in his hand. “Can you leave so we can continue the procedure?” My only response was me exited the room like a zombie.

It wasn’t 10 minutes before they called me back to the recovery room. I sat there numb for an hour and let us both recover. I was just staring off motionless and tired when Dr. Margolin appeared from the side of me watching my exhaustion in full understanding. We sat and discussed the situation and PACU isn’t working for us. In the future we will attempt to have the spinals done by Dr. Margolin herself with local anesthetics. It’s common for kids his age to get them in the clinic. I agreed. Anything done by Dr. Margolin over someone else is always preferred.

Yousuf remained handicapped the rest of the day requesting help to eat and use the restroom….which he used a lot from all the fluids he had. I was able to tap on his port to see if I could feel it or if it was still swollen. Yousuf just yelled at me and told me he could feel the port moving around inside him. I hope it’s better by morning. Lesson learned; no matter how educated and licensed any of these practitioners are I still know something WAY more than them: my son. Next time I will make my knowledge to them credible and make them LISTEN!

The story of Yousuf

2010-12-06T18:52:00.001-08:00

I felt numb inside after today. As if the life was sucked out of my body and I had no emotional response anymore, but then began the deep hidden tears. Today was very stressful, and I will tell you all about it, but first I wanted to share what helped me through it. I realized that the cure for any sadness over Yousuf was in his very name: Surat-ul-Yousuf, the story of Joseph. I cracked open the Qur'an and became delighted in the great reminder of patience and it's virtue. The story doesn't just GIVE you patience but makes you excited to do it...beautiful patience, it's like nothing else. Subhana'Allah.

12. Surah Yusuf (Prophet Joseph)

1. Alif-Lam-Ra. [These letters are one of the miracles of the Qur'an, and none but Allah (Alone) knows their meanings].

These are the Verses of the Clear Book (the Qur'an that makes clear the legal and illegal things, legal laws, a guidance and a blessing).

2. Verily, We have sent it down as an Arabic Qur'an in order that you may understand.

3. We relate unto you (Muhammad ) the best of stories through Our Revelations unto you, of this Qur'an. And before this (i.e. before the coming of Divine Inspiration to you), you were among those who knew nothing about it (the Qur'an).

4. (Remember) when Yusuf (Joseph) said to his father: "O my father! Verily, I saw (in a dream) eleven stars and the sun and the moon, I saw them prostrating themselves to me."

5. He (the father) said: "O my son! Relate not your vision to your brothers, lest they arrange a plot against you. Verily! Shaitan (Satan) is to man an open enemy!

6. "Thus will your Lord choose you and teach you the interpretation of dreams (and other things) and perfect His Favour on you and on the offspring of Ya'qub (Jacob), as He perfected it on your fathers, Ibrahim (Abraham) and Ishaque (Isaac) aforetime! Verily, your Lord is All-Knowing, All-Wise."

7. Verily, in Yusuf (Joseph) and his brethren, there were Ayat (proofs, evidences, verses, lessons, signs, revelations, etc.) for those who ask.

8. When they said: "Truly, Yusuf (Joseph) and his brother (Benjamin) are loved more by our father than we, but we are 'Usbah (a strong group). Really, our father is in a plain error.

9. "Kill Yusuf (Joseph) or cast him out to some (other) land, so that the favour of your father may be given to you alone, and after that you will be righteous folk (by intending repentance before committing the sin)."

10. One from among them said: "Kill not Yusuf (Joseph), but if you must do something, throw him down to the bottom of a well, he will be picked up by some caravan of travellers."

11. They said: "O our father! Why do you not trust us with Yusuf (Joseph), - when we are indeed his well-wishers?"

12. "Send him with us tomorrow to enjoy himself and play, and verily, we will take care of him."

13. He [Ya'qub (Jacob)] said: "Truly, it saddens me that you should take him away. I fear lest a wolf should devour him, while you are careless of him."

14. They said: "If a wolf devours him, while we are 'Usbah (a strong group) (to guard him), then surely, we are the losers."

15. So, when they took him away, they all agreed to throw him down to the bottom of the well, and We inspired in him:"Indeed, you shall (one day) inform them of this their affair, when they know (you) not."

16. And they came to their father in the early part of the night weeping.

17. They said:"O our father! We went racing with one another, and left Yusuf (Joseph) by our belongings and a wolf devoured him; but you will never believe us even when we speak the truth."

18. And they brought his shirt stained with false blood. He said: "Nay, but your ownselves have made up a tale. So (for me) patience is most fitting. And it is Allah (Alone) Whose help can be sought against that which you assert."

19. And there came a caravan of travellers; they sent their water-drawer, and he let down his bucket (into the well). He said: "What good news! Here is a boy." So they hid him as merchandise (a slave). And Allah was the All-Knower of what they did.

20. And they sold him for a low price, - for a few Dirhams (i.e. for a few silver coins). And they were of those who regarded him insignificant.

21. And he (the man) from Egypt who bought him, said to his wife: "Make his stay comfortable, may be he will profit us or we shall adopt him as a son." Thus did We establish Yusuf (Joseph) in the land, that We might teach him the interpretation of events. And Allah has full power and control over His Affairs, but most of men know not.

22. And when he [Yusuf (Joseph)] attained his full manhood, We gave him wisdom and knowledge (the Prophethood), thus We reward the Muhsinun (doers of good - see V.2:112).

23. And she, in whose house he was, sought to seduce him (to do an evil act), she closed the doors and said: "Come on, O you." He said: "I seek refuge in Allah (or Allah forbid)! Truly, he (your husband) is my master! He made my stay agreeable! (So I will never betray him). Verily, the Zalimun (wrong and evil-doers) will never be successful."

24. And indeed she did desire him and he would have inclined to her desire, had he not seen the evidence of his Lord. Thus it was, that We might turn away from him evil and illegal sexual intercourse. Surely, he was one of Our chosen, guided slaves.

25. So they raced with one another to the door, and she tore his shirt from the back. They both found her lord (i.e. her husband) at the door. She said: "What is the recompense (punishment) for him who intended an evil design against your wife, except that he be put in prison or a painful torment?"

26. He [Yusuf (Joseph)] said: "It was she that sought to seduce me," - and a witness of her household bore witness (saying): "If it be that his shirt is torn from the front, then her tale is true and he is a liar!

27. "But if it be that his shirt is torn from the back, then she has told a lie and he is speaking the truth!"

28. So when he (her husband) saw his [(Yusuf's (Joseph)] shirt torn at the back; (her husband) said: "Surely, it is a plot of you women! Certainly mighty is your plot!

29. "O Yusuf (Joseph)! Turn away from this! (O woman!) Ask forgiveness for your sin. Verily, you were of the sinful."

30. And women in the city said: "The wife of Al-'Aziz is seeking to seduce her (slave) young man, indeed she loves him violently; verily we see her in plain error."

31. So when she heard of their accusation, she sent for them and prepared a banquet for them; she gave each one of them a knife (to cut the foodstuff with), and she said [(to Yusuf (Joseph)]: "Come out before them." Then, when they saw him, they exalted him (at his beauty) and (in their astonishment) cut their hands. They said: "How perfect is Allah (or Allah forbid)! No man is this! This is none other than a noble angel!"

32. She said: "This is he (the young man) about whom you did blame me (for his love), and I did seek to seduce him, but he refused. And now if he refuses to obey my order, he shall certainly be cast into prison, and will be one of those who are disgraced."

33. He said:"O my Lord! Prison is more to my liking than that to which they invite me. Unless You turn away their plot from me, I will feel inclined towards them and be one (of those who commit sin and deserve blame or those who do deeds) of the ignorants."

34. So his Lord answered his invocation and turned away from him their plot. Verily, He is the All-Hearer, the All-Knower.

35. Then it appeared to them, after they had seen the proofs (of his innocence) to imprison him for a time.

36. And there entered with him two young men in the prison. One of them said: "Verily, I saw myself (in a dream) pressing wine." The other said: "Verily, I saw myself (in a dream) carrying bread on my head and birds were eating thereof." (They said): "Inform us of the interpretation of this. Verily, we think you are one of the Muhsinun (doers of good - see V.2:112)."

37. He said: "No food will come to you (in wakefulness or in dream) as your provision, but I will inform (in wakefulness) its interpretation before it (the food) comes. This is of that which my Lord has taught me. Verily, I have abandoned the religion of a people that believe not in Allah and are disbelievers in the Hereafter (i.e. the Kan'aniun of Egypt who were polytheists and used to worship sun and other false deities).

38. "And I have followed the religion of my fathers , - Ibrahim (Abraham), Ishaque (Isaac) and Ya'qub (Jacob), and never could we attribute any partners whatsoever to Allah. This is from the Grace of Allah to us and to mankind, but most men thank not (i.e. they neither believe in Allah, nor worship Him).

39. "O two companions of the prison! Are many different lords (gods) better or Allah, the One, the Irresistible?

40. "You do not worship besides Him but only names which you have named (forged), you and your fathers, for which Allah has sent down no authority. The command (or the judgement) is for none but Allah. He has commanded that you worship none but Him (i.e. His Monotheism), that is the (true) straight religion, but most men know not.

41. "O two companions of the prison! As for one of you, he (as a servant) will pour out wine for his lord (king or master) to drink; and as for the other, he will be crucified and birds will eat from his head. Thus is the case judged concerning which you both did inquire."

42. And he said to the one whom he knew to be saved: "Mention me to your lord (i.e. your king, so as to get me out of the prison)." But Shaitan (Satan) made him forget to mention it to his Lord [or Satan made [(Yusuf (Joseph)] to forget the remembrance of his Lord (Allah) as to ask for His Help, instead of others]. So [Yusuf (Joseph)] stayed in prison a few (more) years.

43. And the king (of Egypt) said: "Verily, I saw (in a dream) seven fat cows, whom seven lean ones were devouring - and of seven green ears of corn, and (seven) others dry. O notables! Explain to me my dream, if it be that you can interpret dreams."

44. They said: "Mixed up false dreams and we are not skilled in the interpretation of dreams."

45. Then the man who was released (one of the two who were in prison), now at length remembered and said: "I will tell you its interpretation, so send me forth."

46. (He said): "O Yusuf (Joseph), the man of truth! Explain to us (the dream) of seven fat cows whom seven lean ones were devouring, and of seven green ears of corn, and (seven) others dry, that I may return to the people, and that they may know."

47. [(Yusuf (Joseph)] said: "For seven consecutive years, you shall sow as usual and that (the harvest) which you reap you shall leave in ears, (all) - except a little of it which you may eat.

48. "Then will come after that, seven hard (years), which will devour what you have laid by in advance for them, (all) except a little of that which you have guarded (stored).

49. "Then thereafter will come a year in which people will have abundant rain and in which they will press (wine and oil)."

50. And the king said: "Bring him to me." But when the messenger came to him, [Yusuf (Joseph)] said: "Return to your lord and ask him, 'What happened to the women who cut their hands? Surely, my Lord (Allah) is Well-Aware of their plot.'"

51. (The King) said (to the women): "What was your affair when you did seek to seduce Yusuf (Joseph)?" The women said: "Allah forbid! No evil know we against him!" The wife of Al-'Aziz said: "Now the truth is manifest (to all), it was I who sought to seduce him, and he is surely of the truthful."

52. [Then Yusuf (Joseph) said: "I asked for this enquiry] in order that he (Al-'Aziz) may know that I betrayed him not in secret. And, verily! Allah guides not the plot of the betrayers.

53. "And I free not myself (from the blame). Verily, the (human) self is inclined to evil, except when my Lord bestows His Mercy (upon whom He wills). Verily, my Lord is Oft-Forgiving, Most Merciful."

54. And the king said: "Bring him to me that I may attach him to my person." Then, when he spoke to him, he said: "Verily, this day, you are with us high in rank and fully trusted."

55. [Yusuf (Joseph)] said: "Set me over the storehouses of the land; I will indeed guard them with full knowledge" (as a minister of finance in Egypt, in place of Al-'Aziz who was dead at that time).

56. Thus did We give full authority to Yusuf (Joseph) in the land, to take possession therein, as when or where he likes. We bestow of Our Mercy on whom We please, and We make not to be lost the reward of Al-Muhsinun (the good doers - see V.2:112).

57. And verily, the reward of the Hereafter is better for those who believe and used to fear Allah and keep their duty to Him (by abstaining from all kinds of sins and evil deeds and by performing all kinds of righteous good deeds).

58. And Yusuf's (Joseph) brethren came and they entered unto him, and he recognized them, but they recognized him not.

59. And when he had furnished them forth with provisions (according to their need), he said: "Bring me a brother of yours from your father; (he meant Benjamin). See you not that I give full measure, and that I am the best of the hosts?

60. "But if you bring him not to me, there shall be no measure (of corn) for you with me, nor shall you come near me."

61. They said: "We shall try to get permission (for him) from his father, and verily, we shall do it."

62. And [Yusuf (Joseph)] told his servants to put their money (with which they had bought the corn) into their bags, so that they might know it when they go back to their people, in order that they might come back.

63. So, when they returned to their father, they said: "O our father! No more measure of grain shall we get (unless we take our brother). So send our brother with us, and we shall get our measure and truly we will guard him."

64. He said: "Can I entrust him to you except as I entrusted his brother [Yusuf (Joseph)] to you aforetime? But Allah is the Best to guard, and He is the Most Merciful of those who show mercy."

65. And when they opened their bags, they found their money had been returned to them. They said: "O our father! What (more) can we desire? This, our money has been returned to us, so we shall get (more) food for our family, and we shall guard our brother and add one more measure of a camel's load. This quantity is easy (for the king to give)."

66. He [Ya'qub (Jacob)] said: "I will not send him with you until you swear a solemn oath to me in Allah's Name, that you will bring him back to me unless you are yourselves surrounded (by enemies, etc.)," And when they had sworn their solemn oath, he said: "Allah is the Witness over what we have said."

67. And he said: "O my sons! Do not enter by one gate, but enter by different gates, and I cannot avail you against Allah at all. Verily! The decision rests only with Allah. In him, I put my trust and let all those that trust, put their trust in Him."

68. And when they entered according to their father's advice, it did not avail them in the least against (the Will of) Allah, it was but a need of Ya'qub's (Jacob) inner-self which he discharged. And verily, he was endowed with knowledge because We had taught him, but most men know not.

69. And when they went in before Yusuf (Joseph), he betook his brother (Benjamin) to himself and said: "Verily!I am your brother, so grieve not for what they used to do."

70. So when he had furnished them forth with their provisions, he put the (golden) bowl into his brother's bag, then a crier cried: "O you (in) the caravan! Surely, you are thieves!"

71. They, turning towards them, said: "What is it that you have missed?"

72. They said: "We have missed the (golden) bowl of the king and for him who produces it is (the reward of) a camel load; I will be bound by it."

73. They said: "By Allah! Indeed you know that we came not to make mischief in the land, and we are no thieves!"

74. They [Yusuf's (Joseph) men] said: "What then shall be the penalty of him, if you are (proved to be) liars."

75. They [Yusuf's (Joseph) brothers] said: "The penalty should be that he, in whose bag it is found, should be held for the punishment (of the crime). Thus we punish the Zalimun (wrong-doers, etc.)!"

76. So he [Yusuf (Joseph)] began (the search) in their bags before the bag of his brother. Then he brought it out of his brother's bag. Thus did We plan for Yusuf (Joseph). He could not take his brother by the law of the king (as a slave), except that Allah willed it. (So Allah made the brothers to bind themselves with their way of "punishment, i.e. enslaving of a thief.") We raise to degrees whom We please, but over all those endowed with knowledge is the All-Knowing (Allah).

77. They [(Yusuf's (Joseph) brothers] said: "If he steals, there was a brother of his [Yusuf (Joseph)] who did steal before (him)." But these things did Yusuf (Joseph) keep in himself, revealing not the secrets to them. He said (within himself): "You are in worst case, and Allah knows best the truth of what you assert!"

78. They said: "O ruler of the land! Verily, he has an old father (who will grieve for him); so take one of us in his place. Indeed we think that you are one of the Muhsinun (good-doers - see V.2:112)."

79. He said: "Allah forbid, that we should take anyone but him with whom we found our property. Indeed (if we did so), we should be Zalimun (wrong-doers)."

80. So, when they despaired of him, they held a conference in private. The eldest among them said: "Know you not that your father did take an oath from you in Allah's Name, and before this you did fail in your duty with Yusuf (Joseph)? Therefore I will not leave this land until my father permits me, or Allah decides my case (by releasing Benjamin) and He is the Best of the judges.

81. "Return to your father and say, 'O our father! Verily, your son (Benjamin) has stolen, and we testify not except according to what we know, and we could not know the unseen!

82. "And ask (the people of) the town where we have been, and the caravan in which we returned, and indeed we are telling the truth."

83. He [Ya'qub (Jacob)] said: "Nay, but your ownselves have beguiled you into something. So patience is most fitting (for me). May be Allah will bring them (back) all to me. Truly He! only He is All-Knowing, All-Wise."

84. And he turned away from them and said: "Alas, my grief for Yusuf (Joseph)!" And he lost his sight because of the sorrow that he was suppressing.

85. They said: "By Allah! You will never cease remembering Yusuf (Joseph) until you become weak with old age, or until you be of the dead."

86. He said: "I only complain of my grief and sorrow to Allah, and I know from Allah that which you know not.

87. "O my sons! Go you and enquire about Yusuf (Joseph) and his brother, and never give up hope of Allah's Mercy. Certainly no one despairs of Allah's Mercy, except the people who disbelieve."

88. Then, when they entered unto him [Yusuf (Joseph)], they said: "O ruler of the land! A hard time has hit us and our family, and we have brought but poor capital, so pay us full measure and be charitable to us. Truly, Allah does reward the charitable."

89. He said: "Do you know what you did with Yusuf (Joseph) and his brother, when you were ignorant?"

90. They said: "Are you indeed Yusuf (Joseph)?" He said: "I am Yusuf (Joseph), and this is my brother (Benjamin). Allah has indeed been gracious to us. Verily, he who fears Allah with obedience to Him (by abstaining from sins and evil deeds, and by performing righteous good deeds), and is patient, then surely, Allah makes not the reward of the Muhsinun (good-doers - see V.2:112) to be lost."

91. They said: "By Allah! Indeed Allah has preferred you above us, and we certainly have been sinners."

92. He said: "No reproach on you this day, may Allah forgive you, and He is the Most Merciful of those who show mercy!

93. "Go with this shirt of mine, and cast it over the face of my father, he will become clear-sighted, and bring to me all your family."

94. And when the caravan departed, their father said: "I do indeed feel the smell of Yusuf (Joseph), if only you think me not a dotard (a person who has weakness of mind because of old age)."

95. They said: "By Allah! Certainly, you are in your old error."

96. Then, when the bearer of the glad tidings arrived, he cast it (the shirt) over his face, and he became clear-sighted. He said: "Did I not say to you, 'I know from Allah that which you know not.' "

97. They said: "O our father! Ask forgiveness (from Allah) for our sins, indeed we have been sinners."

98. He said: "I will ask my Lord for forgiveness for you, verily He! Only He is the Oft-Forgiving, the Most Merciful."

99. Then, when they entered unto Yusuf (Joseph), he betook his parents to himself and said: "Enter Egypt, if Allah wills, in security."

100. And he raised his parents to the throne and they fell down before him prostrate. And he said: "O my father! This is the interpretation of my dream aforetime! My Lord has made it come true! He was indeed good to me, when He took me out of the prison, and brought you (all here) out of the bedouin-life, after Shaitan (Satan) had sown enmity between me and my brothers. Certainly, my Lord is the Most Courteous and Kind unto whom He will. Truly He! Only He is the All-Knowing, the All-Wise.

101. "My Lord! You have indeed bestowed on me of the sovereignty, and taught me the interpretation of dreams; The (only) Creator of the heavens and the earth! You are my Wali (Protector, Helper, Supporter, Guardian, etc.) in this world and in the Hereafter, cause me to die as a Muslim (the one submitting to Your Will), and join me with the righteous."

102. This is of the news of the Ghaib (unseen) which We reveal by Inspiration to you (O Muhammad ). You were not (present) with them when they arranged their plan together, and (also, while) they were plotting.

103. And most of mankind will not believe even if you desire it eagerly.

104. And no reward you (O Muhammad ) ask of them (those who deny your Prophethood) for it, it(the Qur'an) is no less than a Reminder and an advice unto the 'Alamin (men and jinns).

105. And how many a sign in the heavens and the earth they pass by, while they are averse therefrom.

106. And most of them believe not in Allah except that they attribute partners unto Him [i.e. they are Mushrikun -polytheists - see Verse 6: 121].

107. Do they then feel secure from the coming against them of the covering veil of the Torment of Allah, or of the coming against them of the (Final) Hour, all of a sudden while they perceive not?

108. Say (O Muhammad ): "This is my way; I invite unto Allah (i.e. to the Oneness of Allah - Islamic Monotheism) with sure knowledge, I and whosoever follows me (also must invite others to Allah i.e to the Oneness of Allah - Islamic Monotheism) with sure knowledge. And Glorified and Exalted be Allah (above all that they associate as partners with Him). And I am not of the Mushrikun (polytheists, pagans, idolaters and disbelievers in the Oneness of Allah; those who worship others along with Allah or set up rivals or partners to Allah)."

109. And We sent not before you (as Messengers) any but men, whom We inspired from among the people of townships. Have they not travelled through the earth and seen what was the end of those who were before them? And verily, the home of the Hereafter is the best for those who fear Allah and obey Him (by abstaining from sins and evil deeds, and by performing righteous good deeds). Do you not then understand?

110. (They were reprieved) until, when the Messengers gave up hope and thought that they were denied (by their people), then came to them Our Help, and whomsoever We willed were delivered. And Our Punishment cannot be warded off from the people who are Mujrimun (criminals, disobedients to Allah, sinners, disbelievers, polytheists).

111. Indeed in their stories, there is a lesson for men of understanding. It (the Qur'an) is not a forged statement but a confirmation of the Allah's existing Books [the Taurat (Torah), the Injeel (Gospel) and other Scriptures of Allah] and a detailed explanation of everything and a guide and a Mercy for the people who believe.

Pentamidine

2010-11-11T10:55:00.000-08:00

A loud thump against the glass door and an image of Yousuf’s body imprinted on the hazy glass was all I could see from the other side of the door during Yousuf’s administered pentamidine, the alternative to Yousuf’s once a week antibiotic. I could only stand on the other side and try to give an illusion of a sympathetic mom through our blurred barrier. His attempt to escape was unsuccessful as I could see his image fading away as the nurse drug him back. I sat outside the door starring at the note attached of a pregnant woman with an X over it communicating quite obviously that pregnant women were not allowed. This room was specifically for pentamidine breathing treatments only which can differ in duration of time depending on the child’s age. Yousuf’s will be for 30 minutes. The nurse has to hold the mask over his mouth the entire time taking breaks throughout. They play a movie to entertain the child, which obviously was not enough to convince Yousuf in the beginning to sit still. Afterwards, Yousuf came out happy as ever and ready to leave. Since they already had taken his routine blood count we were ready to go! On the way to the car Yousuf was telling me all the people he loved, which eventually became loving everyone. I must of broke his “happy state” after I roared with laughter when he told me he loved the valet guy after getting in the car. He demanded that I stop laughing at him but continued in his list of loved ones. I hope this will always remain a “happy drug” for him.

It reminded me of when he was getting all those blood transfusions. Sometimes we would leave the hospital and Yousuf would be the biggest grouch and I would blame it on the person’s blood being “bad blood”. There were times that he would leave ecstatic and happy and I would jokingly say, “Can we get more of that person’s blood!”

I got a call later giving me the blood count results (CBC) and his ANC was a whopping 4.0! It’s sad how a high number (which is normally a good thing) has to be alarming in a cancer patient. They increased his methotrexate to 3 pills a day now. Which is fine by me since it used to be 5 ½ before his continuous low counts. I would much rather start low and steadily increase rather than the other way around with the continuous low counts and seclusion. The doctor’s obviously agree since too low of a blood count would mean kicking him off the medications until the number got back up. It is more important to have a steady (even if lower) dose of chemotherapy drugs than continuing to get off of them.

Throughout all of the highs and lows of his blood counts he has remained well and out of the hospital, alhamdulilah. May Allah (swt) continue his journey through cancer treatment always as an OUT patient.

Yousuf's 5th Birthday

2010-11-11T09:34:00.000-08:00

I'm sorry for not posting for a while. I have a few blog entries that I haven't had time to type up. I'm starting to catch up now dated back to Yousuf's birthday in August....

I just gave birth to Yousuf not long before they wheel chaired me up to the recovery room. I probably had never been so exhausted my entire life; little did I know that exhaustion was just the beginning. Yousuf was the tiniest little human that I had ever seen, held or cradled. This was my baby, my little baby boy. I was excited and ready to be a mom. Once the reality of nursing sunk in the excitement quickly vanished and the overwhelming sense of responsibility began to sink in deeper. The lack of sleep and privacy from being in the hospital created deep felt tears, fears and thoughts of, “Can I do this?”

I had nursed Yousuf right before they took him for a few routine checks. It had been less than thirty minutes when the pediatrician rolled Yousuf back in and told me he was hungry again. The words stung my ears as I exhaustingly replied, “But I just fed him.” My inexperience as a new mom led me to believe that she must be mistaken. I wasn’t aware that new born babies can feed consistently over hours at a time. She gave me a discerned look of disappointment and rolled him back out. I thought to myself where is she going? I wasn’t denying feeding him. Later I found out I was not being discharged the next day due to worries that I was not a fit mother! What?! I was going through the most excruciating pain I had ever experienced and to be put under watch was only adding to my stress as well as insulting. After all, if I was such an unfit mother wouldn’t I just have given up and surrendered to the many attempts to formula the nurses insisted on? I chose to do what’s best for my baby even if it caused me pain. Finally, after sucking up the pain as much as I could and plastering fake smiles and calmness all over my face they let me go home.

As a first time mom, the day Yousuf was born, I embarked on the journey of motherhood. For the first time in my life I didn’t have the option of ultimate failure. All my “failures” in my previous life were only that because of my lack in attempt to try again. This time I didn’t have that option. Motherhood does not give you that luxury of ever quitting but only the option to create new strategies to try and succeed. In my past, I could and did walk out of the house when presented with a problem, quit a job I didn’t like or even move to a new location. When I reached home with my little Yousuf, it was only him and I facing this tremendous task of breastfeeding together. I couldn’t run this time. Not only did I have no choice to face this problem but I HAD to succeed. My baby’s life depended on me. I spent two months struggling in the worst pain each time Yousuf nursed from me. Two months of problems from ER visits due to breastfeeding related illness, flooded home and a hurricane evacuation…and I did it alone. It wasn’t until Yousuf was 2 months old that I could look at him and smile and truly enjoy him. It sounds sad I know but I’m glad I did it. I succeeded in something that some mother’s eventually give-up in. Those two months were worth the 21 months I got to nurse my child and give him the best nourishment there is, a mother’s milk. This experience taught me that when you make success your only option you will create a way somehow.

Nursing was just the beginning. The idea of physical pain in order to nourish my baby seemed a lot less severe after watching my 3 year old endure the pain while I can do nothing but sit there and watch. This taught me a new lesson, once you pass one test there is always a more difficult one waiting around the corner. Tests, they are an exercise to our eeman (faith) and the higher levels we achieve the harder the work-out becomes. Never at a steady level, either increasing or decreasing in our eeman (faith), there are harder tests to keep our hearts in shape and beating stronger. When I see a difficult task, no matter how difficult it is, I must just face it and say, Bisma’Allah, Allah knows I’m ready for this.” I must grasp the handles of life and petal as hard as I can through this world despite the terrain. Yousuf has not only given me the experience and strength but the wisdom behind it.

Happy Birthday on August 2nd 2005, a day on which more than just a beautiful baby boy was being born. A day that gave birth to a whole new meaning and purpose in my life, with a steady target of success, and the determination to always reach it.

"CountLESS" Times

2010-07-23T11:37:00.000-07:00

I was running my fingers through Yousuf’s, now thick light brown hair, while I stood in line to purchase tickets to the zoo. I recalled that exactly a year ago we were sitting in a hospital room, Yousuf bald playing with a fire truck with only one hand, acting completely paralyzed on the other side of his body due to the port-o-cath insertion just a few days prior. Here we were looking completely normal walking through the zoo. I didn’t mind the heat, the long walking, or the strong odors to my sensitive pregnant nose. I thoroughly enjoyed my trip to the zoo by seeing how happy it made my kids. We have been given a second chance to live these experiences in a more meaningful way. Dr. Margolin is pretty confident that Yousuf will be just fine, but despite that confidence we never really know for sure. Many people say that all these doctor’s visits, rounds of chemo, and low blood counts will soon just all be a memory. I don’t want it to be “just a memory”. I want something permanent to change in my heart and in my life forever, as well as others. The impact of Yousuf having cancer opened a door to a world of sick people and great people that I didn’t know much about. Sure, I don’t want my little boy to be among them forever but I always want to be with them now. I love them. Not just the sick but the great doctors, researchers, and healers among them. Its funny how there are still times I cry alone just by remembering that Yousuf has cancer. I get sad every time the new month starts and he has to take the steroids altering Yousuf’s appetite and temperament. I always envision Dr. Margolin swinging her revolving chair around, peaking over her glasses with a smile saying, “I think it’s worth it.” Then I always remember the alternative to not going through all of this chemo. Insha’Allah, Yousuf will not always have cancer but I’m always looking for ways to get involved in cancer related events. When you’re in the same “family” giving to them is as if you are giving to your own child or even yourself.

Yousuf’s counts kept getting low and they would keep stopping his medicine and restarting it. His ANC got so low to a .15. The doctor likes to see that number between a 1.0-1.5, which is, of course still very low, but where they want a cancer patient to be at. The doctor decided to cut all Yousuf’s medicine in half, all except for the once a week antibiotic (bactrum) he takes. His counts were STILL low. They did an enzyme test to see how well Yousuf metabolizes each of the medicines. Maybe the medicine stays in his system longer knocking his counts lower. The result was normal for the daily dose of mercaptoprine but was slightly slower with the once a week methotrexate…but he had not taken that medicine yet since it hadn’t been a week since his last check-up. So then why were his counts still low? Well, it was clear to the doctor that it was the bactrum (antibiotic) making his counts so low like this. We needed different alternatives now for this three-day-a-week dose. Our options were: a pill every day -but it lowers his hemoglobin count ( I would rather steer clear of anymore blood transfusions!), second, an infusion once a month that lasts 1-2 hours to transfuse, or third (my choice) an inhalant that lasts 30 minutes that can be done at the hospital while getting his routine blood count anyway. We will see how this route goes and how his counts look. My once a month trips the hospital are now up to twice a month but hopefully with a higher ANC count and stronger little boy! And to be honest it only gives me more opportunity to reach out and be with the other patients, alhamdulilah. I love them all.

What I've learned in a year...

2010-06-16T20:46:00.000-07:00

I’m sitting here in the recovery room while Yousuf is still sleeping after his spinal tap. I’m jotting down my thoughts in this tiny notepad I bought from the hospital gift shop since they don’t allow laptops or cell phones in the recovery rooms. I remember the first time we were in here and I didn’t know quite what to do unless the nurse instructed me. I just sat stiff in the chair next to the hospital bed watching other parents acting relatively normal and comfortable. Perhaps those parents have been here before. Now, a year later, I kind of laugh when I realize how I must look to others when I arrive to waiting rooms or recovery rooms. We were in the surgery waiting room just last Friday and when I arrived I found a couch, unpacked the toys and books, kicked off my shoes and sat Indian style on the couch as I started to dive right into reading. I glanced over the top of my book to check on Yousuf and saw a room full of parents and kids staring at me. They were all sitting formally and up right while their kids checked out the waiting room toys. I thought to myself, If I’m going to spend hours in here might as well make myself comfy. New nurses in the recovery room keep coming over to me to instruct me on the “after-surgery-instructions”. As if I don’t know. Yousuf looks so babyish curled up on the bed with his features so miniature. He expresses the same look as when he was a new born laying his head on my shoulder falling asleep after nursing. What this tiny fragile little 4 yr old boy and this experience has taught me in the past year…
1. There are different kinds of leukemia and acute lymphoblastic leukemia is one of them.
2. Lessons learned through our children are the most painful but also have the most impact.
3. The real meaning of helplessness.
4. That the Cancer Center at TCH is on the 14th floor and it is full of people just like me and you and every day and, often times, all day.
5. Just how fast a building can be erected in the medical center.
6. Stress comes at many different levels. We can’t avoid stress but we can always control the level.
7. No matter how many times a child sees a needle they may never get used to it.
8. It is not enormous amounts of knowledge or high levels of intelligence alone that matters but the full appreciation and gratitude that drives us to make change in our lives and the world.
9. Texas Children’s Hospital has some of the best doctors, nurses, valet workers and volunteers in the world.
10. Understands a large amount of the hospital funding MUST be through the parking costs.
11. You can’t always prevent cancer from coming but you can ALWAYS help someone go through it.
12. There is never an act of charity or kindness that goes unappreciated or unnoticed when brought into the corners of a hospital room or waiting rooms.
13. Medicine is just another drug; some cure you and some harm you and sometimes they do both simultaneously.
14. They seriously need to start some way of recycling at the hospital. I see so much wastage of bandage wrappers, tubing, alcohol pads, and oxygen masks.
15. The meaning of family and how something tragic forces unity and teamwork among family members.
16. Cancer Center-14th floor, Day Surgery 7th floor, Orthopedics 8th floor, Metabolic disorders- 16th floor, Another Day surgery- 3rd floor in the West tower, Cancer and blood disorders in patient- 9th floor in west tower. I know, I have been to all of them A LOT.
17. An understanding that spiritual, mental, and physical health all affects each other and one is not more important than the other. They all deserve attention and nourishment.
18. Health is not just a noun it is a verb, so take action to always maintain is, strengthen it and appreciate it. Health is also an attitude when given the will it can fight any disease physical, mental or spiritual. You may lose or win but never lose hope and give up the fight.
19. I see many babies and small children going through more tests and are more resilient than adults going through minor difficulties. We can learn a lot from children.
20. You can’t change what happens to a child or even how they perceive the world but you can give them the right tools to guide them through it.
21. I will never underestimate a mother’s love for her child. Sometimes loving them is all you can do but often times that’s all they need.
22. Yousuf is one of the bravest kids I know whom has given me purpose and meaning to my life!

Almost 1/3 of the way there! I love you, my little future cancer survivor!

Yousuf's view on cancer

2010-06-16T13:01:00.000-07:00

Yousuf’s interview after one year of cancer (And right after a spinal tap)

1. It’s been a year that you have had cancer and treatment, how do you feel? “Good!” (And this is not even an hour after waking up from a spinal tap).
2. What did you like better? Life before or after Cancer? “After”
3. What’s your favorite part of going to the hospital? “Toys!”
4. What do you hate most about going to the hospital? “Having a port-o-cath”
5. Do you have any friends at the hospital? “The girl who always talks to me.” (The child life specialist).
6. Does it hurt to have cancer? “Yes”
7. What hurts the most? “Pricking the finger”
8. Why do you take medicine every day? “To help my blood.”
9. Was it hard when you didn’t have hair? “No.”
10. Did you like being bald? “Yes, umm no.”
11. How did mama make it easier for you this year of having cancer? “I sit on her lap, she tickles me and Omar and she is good to me.”
12. What was your favorite toy you got during this time? “Batman toy that baba got me!” (I think he is living in the now…he is playing with it right now)
13. If there was anything you could have in the world what would it be? “People to always be nice.”
14. What things did baba do to help you through having cancer? “He helped me to stand up; he would bring me food and give me toys.”
15. Is there anything scarier than a needle? Yes! Star Wars bad guys and bugs.
16. What’s worse? Having cancer or a broken arm? “Cancer.”
17. If cancer was an animal what would it be? “A Lion. They are strong.”
18. What do you do when you’re sad in order to make you happy? Play with legos, star wars toys, or Omar.
19. What do you think about doctors? “They help me. Can you stop asking me questions now, mama?” …One more question.
20. If you could help another kid with cancer what would you do? “Help during the port-o-cath access and share my teddy bear with him.” (The teddy bear which has the port-o-cath that he plays with and practices with).

Just a spoonful of sugar!

2010-03-27T19:30:00.000-07:00

Now there’s not such a healthy ingredient to be taken by spoonfuls! I’m sure Mrs. Poppin’s could have chosen a healthier way to “get the medicine down.” Perhaps that’s left up to us experienced moms with sick kids. I usually use apple sauce or yogurt unless the medication cannot be taken with dairy. As for Yousuf, he has been off all his oral chemo-therapy drugs now going on three weeks. Of course, I’m enjoying the freedom and the more original Yousuf that is being revealed due to the side effects tapering off. Yousuf has been neutropenic for three weeks now and we will get a recheck on his blood next Tuesday to see if we can resume his chemo-therapy drugs. He did have high enough counts to get his spinal tap and other chemo-therapy drugs that aren’t count suppressant.

When talking to Dr. Margolin this last visit, we had a few new questions. Yousuf, as well as anyone on this treatment, has to take an oral antibiotic to prevent a certain infection from occurring. Dr. Margolin explained that the amount of kids they were losing to the actual leukemia and to this certain infection was the same amount. When the kids take this antibiotic they usually have no problems, therefore it is essential that they take it. There are times when it cannot be taken, for instance it can’t be taken within a day or so of certain chemo-therapy drugs. The doctor would often say that’s okay since the drug stays in the system up to three weeks. So my question was simply, why can’t we just take the drug every three weeks instead of every week? I feel the less medicine the better, I can’t help it. She came and said that the EFFECTS of the medicine stay in the system but not the drug. It’s too risky to say that the effect is still there to keep this infection away. However, if Yousuf continues to be neutropenic again we will discuss different options for this medication since it is count suppressant. She said we like to change the non chemo-therapy drugs before the actual chemo-therapy. The dosage he is on is low since he is on the lower risk ALL, so she doesn’t feel comfortable going with something lower.

I also asked her about Yousuf’s schooling. He’s not in school right now but I asked her when he goes that means he will miss a day almost every week since we will be at the doctor’s? Dr. Margolin looked up from Yousuf’s chart and said with a smile, “I think it’s worth it.” I felt a tad embarrassed as though my goal was no longer to cure Yousuf. I smiled and continued to ask my questions. I asked about attending school at times he is neutropenic. She said they prefer him not be in school during these times. She said they have dealt with many schools with these same issues so just to inform them and they will write as many doctor’s notes or make as many phone calls as they need. Of course, my concern is not so much an uncooperative school as it is the impact of missing out on so much for little Yousuf. I want him to feel as normal as possible and not “special” in these ways. I feel the pain by remembering when I was yanked out of normal class and taken to a special classroom for speech therapy. I would return to class usually missing out on the most fun activity and would feel a little lost or confused, after only one hour away. The other day Yousuf was going to visit his half brother, but I had to stop and make an appointment for Yousuf to get his blood checked. Yousuf thought he was going to get it checked right then. He cried and cried saying he didn’t want his brother to see him with his finger like that with an enormous band aide. I felt as though he just wanted to be a normal boy and hang out with his brother without a handicapped finger due to soreness from the pricking.

I went on to ask her about alternative treatments and she, as suspected, stated her negative opinions on most of them. She did not deny that some of them WORKED but that this treatment plan has had the higher chances of working more than any other method. She did say they are conducting many researches on different and better ways to treat ALL, which will probably come in effect by the end of her career. I told my concern for the long term effects of all this chemo on Yousuf and the increase of other cancers because of it. She said that should be a concern because Yousuf has already proved he can get cancer once so he will always be higher risk for cancers. She said that’s why certain things he definitely should not do to his body like smoking, for example. In short, he needs to take extra care of his body and health.

Health is still not taken for granted as we juggle the concerns of medicine, many trips to the doctor to get poked, and feeling extra troubled with any injury, case of diarrhea, or lack of energy. Though overall, we have achieved a very high level of having little Yousuf back to normal, certain small ailments and low blood counts still play a significant role in our life. Alhamdulilah, experience and adjustments have been made making these “expected” surprises more bearable.

The Inner Chef

2010-03-27T19:15:00.000-07:00

I enjoyed my very first episode of Iron Chef the other day, after hearing such good things about it for so long. I started out sitting back and relaxed while watching it on my laptop but that immediately got switched to me on the edge of my seat anxiously awaiting the outcome of all the hard work from the two chefs competing. With “surprise” and rare ingredients as their only option to create a breakfast, lunch, and or dessert in the matter of only one hour, these chefs were hard at work. I was on the edge of my seat as I observed closely the two chefs, having only a matter of three seconds left on the clock while delivering their final product in serving dishes with a decorative garnish. It was only afterwards I thought about the talents and mastery of these chefs and could somehow start to relate. In no way do I mean in their expertise but rather their same challenge in finding ways to cook up the best recipe based off of unique and rare ingredients or should I say characteristics?

I began to love the analogy based off the concept of the show and what every individual in the world faces daily…ways to create the best ME using my own distinctive “ingredients”. I watched the show again paying attention to their attitude and different “styles” in dealing with this humongous task at hand, and thought to myself, how the world would be despite different styles we have, if we took on the attitude of these chefs in the kitchen and applied it to everyday life.

Focus. They were focused on what they were doing and NOT what the other chef was doing. They are competing to cook up something better but aren’t lagging behind due to negative comparing during the process. Many times we get discouraged or would be discouraged if we constantly looked at others and said…”But they have better ingredients to work with.” Or “They have a better opportunity with those better assistants helping them in the kitchen.” The chefs worked with what they had and they STILL cooked up amazing dishes because that’s what they were focused on.

Organized. They were organized despite the dumping of the “surprise” ingredient on their counter. They quickly accommodated themselves to this EXPECTED surprise. This is probably due to already having the good habits of organization instilled in them. Likewise, we can also learn to accommodate to “surprises” keeping in mind, firstly, that they often happen so be ready and secondly, staying organized is a key to easy accommodation when something unexpected comes along. Imagine when your life is already a mess than something new suddenly pops up in your life. It can either cause extra stress in your life since there was already chaos OR it can force the organization to take in effect the hard way.

Great attitude and courteous. This really impressed me. The spokesman would keep us in tuned to what was going on in the kitchen, due to their experiences. Many times the chef would kindly correct them, enthusiastically, on a few of their actions in the kitchen or an ingredient they added. At one point one of the chefs yelled out a question if they had anymore parsley left. Still busy with his own goals, the other chef said, “I have some extra!” And he quickly gave her some. Impressive. To accomplish the skill of team work WHILE competing is humbling and talented. We compete in order to motivate us to meet the best of our potential but the only way we can be our best is when we “play” fair and help others to meet their potential, NOT try to hinder them with certain advantages you have or disadvantages they have. The only loser would be the one who didn’t try to learn anything from the contest and perhaps what their weaknesses are to work on, despite who the actual winner was.

In the past, I’ve lacked many of the kitchen tools in order to help me cook up the best from my ingredients. I often thought mine weren’t good enough or the “other chefs” of the world had many better ingredients and helpers to minister to their mastery and perfection. Hmm…perfection? The judges are another great example in this cooking show of life. Some judges loved a dish that the other would completely disagree. While feedback (FEEDback :)) is useful, letting ourselves be our true judge is the best way we can reach our own potential and not others. What we often forget is that there is not a standard until someone comes along to set it. And with NOT one person sharing the same exact ingredients as another person in this world than “standard” can only be measured by you.

One advantage these chefs have is that they are picked because they are from the best KNOWN. They are master chefs who have been trained in what they do. Many of us have not been trained or experienced in juggling our ingredients in such a way to create a masterpiece….yet. The problem is lack in training, discipline and realization but NOT in the specific ingredients. The fun is in the course in training ourselves and practicing life with our ingredients. Many times during the process we either discover ingredients we didn’t know we had or we pick up new ones. We have to remember that Allah has created us exactly the way He wants us, that includes talents, strengths, weaknesses, handicaps, and all the many imperfections we may see in ourselves. We are not built in any way that will hinder us unless we allow it. So let us all put on our aprons and get ready to serve to the world the best and unique “dish” the world has ever had!

Long Term Survivors or Sufferers?

2010-03-01T20:12:00.000-08:00

When arriving to Yousuf's regular PCP a couple weeks ago for his routine blood count, or rather a recount after the previous was too low to continue his meds, I saw a sign posted by the check-in. I can't quote it exactly but it was stating the awareness of the media's negative attention on some of the vaccines and said that Dr. Hausinger recommends all the vaccines (including H1N1 and seasonal flu) due to no scientific proof of any medical problems as a result.

Okay? No scientific proof, does that leave your heart reassured that you will walk out alright? My question is....isn't science always changing? Always evolving? It should read, "..Due to no scientific proof of any medical problems....that we KNOW of." Or, "YET." Wasn't it a part of "science" at one point to believe the world was flat? Science can only take us so far because of the fact that it hasn't stayed the same for more than a decade.

I started reading this article about long term "survivors" of childhood cancers. I thought it was interesting. I pasted the first and the last chapters. Inbetween are all the possible long term damages due to certain chemo drugs and radiation, based on studies....

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The success of three decades of effective multimodality therapy for the treatment of childhood cancer has brought a cohort of maturing individuals, pursuing the normal experiences of life. Of each 1,000 twenty-year-olds, one is a survivor of childhood cancer [1]. Although the study of late effects originally arose within the realm of pediatrics, concerns may surface throughout the life cycle. Effects of therapy on the maturing organs become manifest only with the developmental process that unmasks hitherto unseen injury to immature organs. The focus of clinical trials on three- or five-year event-free survival thus does injustice to the needs of patients for support and information long after the trial endpoints are reached.

For the patient, any side effect for which he or she must compensate during life is a long-term effect. Tissue damage noted during or at the end of therapy may remain stable or become progressive. Late effects refer specifically to those unrecognized toxicities that are absent or subclinical at the end of therapy but manifest later as a result of growth, development, increased demand, or aging. Compensatory mechanisms that initially maintain the function of injured organs may fail with general organ senescence. Afflicted patients may have to undergo major adjustments to a lifestyle for which they are unprepared. The genetics of familial cancer syndromes and the mutagenic effects of therapy independently or synergistically may result in a significantly increased risk for a second malignancy. Synergistic effects of mutagenic agents (e.g., cigarette smoke) or toxins (e.g., alcohol) remain unknown.

This review will focus on types of tissue injury noted in long-term survivors. Rather than a comprehensive review of all described "late effects," the goal will be to consider types of effects and time of presentation. Stratification of effects by the time of appearance is important in considering potential causality as well as clinical screening methods. Specific organ toxicities will be presented to illustrate these points. The extent of tissue injury must be evaluated in terms of the therapies and doses given during the treatment period.

The plateau of the survival curve is most prominent in survivors of childhood malignancy since few diseases unrelated to the tumor or its therapy will result in an early death. Although the survivors of modern childhood cancer therapy are beginning to enter their fourth decade of life, it may be another two decades before the effect of aging on such individuals becomes clinically apparent. This enlarging population, as well as the similar population of young adult survivors of cancer, will require considerable attention from internists and the medical community in the decades to come.

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CONCLUSION

As our patients grow, the fields of pediatric and adult oncology must grow with them. Our job is not done when the cancer cells are gone, for the years of life may present challenges that may be recognized only in the context of the original treatment plan. It must be our goal to mitigate the effects when possible, and, if not possible, to understand the effects so that future treatment regimens can be designed with fewer risks to long-term health.

Emphasis on the acute treatment phase has resulted in remarkable successes. Our discipline must now set up the mechanisms to learn where therapies have failed those who are cured of their cancers. Only by continued, systematic follow-up of large cohorts of survivors will we know the full spectrum of damage caused by cytotoxic therapy and possible interventions that may mitigate the effects. At present it is suggested that these survivors, whose bodies have been subjected to harsh cytotoxic therapies, should be encouraged to protect their bodies from further injury using the preventive approaches known to be effective for the general population. These include abstinence from tobacco, limited exposure to alcohol, sun protection, reduced fat intake, and maximal intake of fruits and vegetables. At a minimum, the surveillance techniques for detecting cancer in the general population (breast self-examination, mammography, testicular examination, examination of stools for blood, and evaluations of the rectum and colon) should be performed regularly.

A dilemma exists for the practitioner who might someday find that one in 1,000 patients is a survivor of childhood cancer. This number is too high for a practitioner to be unaware of potential problems, but far too low for him or her to maintain an adequate knowledge base to provide optimal care. Nevertheless, the trend over recent years has been to return patients to the care of primary physicians. Ongoing methods for educating both the patient and the primary caretakers must be devised. We must set up programs to evaluate the survivors every one to three years to assess and care for chronic organ damage, providing the necessary support for the primary physician. This must not replace the primary caretaker, but rather complement good primary care with that of the specialist who can anticipate potential problems specific to cytotoxic therapy.

TO READ THE ENTIRE ARTICLE:

http://theoncologist.alphamedpress.org/cgi/content/full/4/1/45

Life in Maintenance

2010-02-12T20:52:00.000-08:00

The past month and half has been relaxing, fun and full of meaning. I haven’t yet forgotten the 6 months of hardship. I still think about the many sick people in the hospital. Despite my rejoining the well world and returning to normal life with fun filled activities and outings, I will find myself reflecting on some of the simplest yet finest moments of our day. Watching Yousuf play and exert all his energy in running, laughing and talking brings more happiness than exhaustion.

At times I will be at the brink of my patience in dealing with both Yousuf and Omar but there will always be some memorandum in my head ushering my thoughts back to the importance of my role as a mother. I admit it’s much easier to do when juggling his menu of medications like some walk through a cafeteria line. It reminds me of how, at any moment, he could return to the hospital, there is always a chance of the worst happening. It’s easier to understand and realize that when you feel you have been through one of the top worst.

No matter the old familiarities, life will always be different now. Rummaging through my purse at a red light in search of a Kleenex, only to keep pulling out hand sanitizers, folded up papers with blood counts or even a left over oxygen mask, interferes with what used to be called normal. Every two weeks we are still waiting a couple hours in doctor’s offices anticipating the same kicking and screaming. I still fear sickness and worry with every ache, bump or prick.

I found myself a bit more relaxed around other kids and public places, since many kids like him have returned to school. I’m still unsure how strict or not strict I should be. I found a message on my phone today from Yousuf’s nurse. I thought she was calling about a prescription refill but instead instructing me to stop all of Yousuf’s medications for the week and wait to check his blood count again next Wednesday. His blood counts, yesterday, showed he is neutropenic and will need to wait to reevaluate his counts in a week. I’m back to constant temperature taking and being home bound…now there’s something familiar.

Give Blood and Give Life!

2010-01-31T19:17:00.000-08:00

My article for promoting Gulf Coast Regional Blood Center and their many efforts to help save people's lives!

In the dark corners of a hospital room a nurse yanked off her rubber gloves after administering Yousuf’s very first blood transfusion. It was late and already dark outside while we all sat in the emergency room surrounding Yousuf’s bed as he lay there exhausted falling asleep from a long day. The lights were off, in pursuit to provide Yousuf as much comfort as the situation would allow. There we sat, with nothing but the lights of all the monitors from the infusion tower. I glanced over and saw the reflections from the lit up monitor screens staring back at me from his father’s glasses. He sat reclined with his head facing towards The All-Merciful. Surely, that is the only one we could call on for support in such a time as this.

After hearing our son’s diagnosis of leukemia, we continued listening, as the doctor sat in the chair next to us, illustrating for us the next few days. The more the doctor talked the harder it became to listen. We were having a difficult time absorbing the first part of the news: the cancer part. My eyes darted from the doctor back to his father and saw the reflections from his glasses enhance the wetness under his eyes. He was biting his bottom lip and just kept his gaze upward.

Yousuf, like any other vibrant 3 ½ year old, normally, was always full of energy, excited to see other kids his age and loved to play with his baby brother. His favorite toys were anything about transportation: Trains, cars, airplanes…you name it! He enjoyed sea animals and climbing. He’s famous for the best greeter. If he knows you well and hasn’t seen you for a while he screams your name and stretches his arms out wide! His smiles and laughter can brighten any room.

It had been several days that I saw a huge change in Yousuf’s behavior. He was not wanting to walk, acting antisocial, crying from being anywhere but home, and complaints of being cold in the summer heat. I couldn’t understand what the matter was since he didn’t seem to have any cold or flu symptoms. A disease steadily attacking and killing off his blood cells certainly did not cross my mind. His blood count was so low that the doctor was surprised he could walk at all. His face was ghostly white with the only color to him being the redness under his eyes. I am amazed how I didn’t recognize it before. My son was dying. He was slowly deteriorating by loss of blood gradually draining him of life little by little.

The very next day in the hospital, during his 4th or 5th blood transfusion, I sat there next to his side trying to face the reality of the situation. It was at that time a lady came in. We had many visitors, mostly doctors and nurses, but this lady didn’t seem to be interested so much in getting Yousuf’s attention as she was trying to gain mine. She sympathized with me, of course, and then she went on to start to explain the pamphlet she was holding in her hands. She told me, “If someone asks you how they can help, tell them THIS is how.” And she handed me the pamphlet about giving blood. At the time, I could not think about anything but my son and my own emotions but I tucked it in my binder, with every intention of pulling it out one day eager to give back.

If it wasn’t for a sufficient amount of blood in the bank, Yousuf may not be alive today. The normal hemoglobin count for a boy Yousuf’s age is between 11.5 and 14. When we arrived to the Emergency room Yousuf was at a 2. In effort to bring the very essence of this little boy and the vivacity back into his veins, Yousuf underwent many more transfusions over the first phase of therapy. He continues to depend on the donations of others blood to keep him alive through his battle of leukemia.

I know that many of us cringe when seeing a needle. The experience of being pricked and poked doesn’t send a surge of excitement or joy through our veins rather puts a strain on our comfort and a feeling of uneasiness. For many people, including Yousuf and many kids just like him, they don’t have a choice. They can’t just ignore it and say no, their life depends on it. Their life also depends on those who overlook their fears, ignore the small price of a tiny poke, and enjoy the thought of what their action is doing.

Starting from that night of my son’s very first blood transfusion, until today, donors continue to sustain my son’s life and others like him. Each time a person dedicates a portion of their blood, know that in some dark corner of a hospital room it’s saving someone’s life….Just as it did for my son that night.

An Unwasted Experience

2010-01-05T19:58:00.000-08:00

I would have normally written by now about our trip to the hospital this week, but there wasn’t one. Monday left me feeling a bit awkward. I had imagined myself waking up extra bright and early fighting the traffic that had returned in full fledge after the holidays while everyone was returning to work and school. I imagined us running late and being dropped off with Yousuf, in order for us to run upstairs to make the appointment, while Abu Yousuf parked the car. I envisioned all the people in the waiting rooms, nurses and doctors, all the familiar faces. I drew a picture of the waiting room and who might be there that day, Yousuf being accessed and having his fit but being happy afterward with a new cheap toy or sticker from the treasure chest. I imagined it, but I didn’t live it, at least not this Monday.

While I have been trying to establish a new routine, a much more relaxed one, I still am trying to hold onto the importance of the life we lived when he was sick. Throughout my day no matter what it was I was doing my mind would drift off to the couches of the waiting room at Texas Children’s Hospital. It’s nice not having to be there but I am still aching for those who are still there. At least before I could be of comfort knowing I was feeling their pain alongside them but now, while we are moving on with life and better treatment phases, I hope never to forget them.

The new worry and anxiety will come with each blood test now, wondering if it will come back with blood behaving in the old cancer ways. When I had talked to the doctor about causes for relapse and she confessed that they really don’t know why certain people relapse while others don’t, I thought of a new reason. The doctor said that her best patients with the best diet, stress-free atmosphere, and religious about taking the medications would relapse; while those who are lazy in taking every single dose and still are careless in lifestyle choices go on completely cancer free for the rest of their lives. Maybe it’s something deeper than that, and I’m not trying to accuse those who do have relapses, but perhaps the lesson wasn’t learned. No benefit that was NEEDED to come out of it continued to occur. Rather a relapse in carelessness, feeling as though a person has complete control over their health and or life, and even worse a relapse having a lack of full appreciation of oneself or children. It is this reason that, more than just concentrating on Yousuf’s physical health, I also want to continue to remember the lessons behind it. I ask Allah to please don’t ever let me forget and never let this be a wasted memory or experience.

I know that I couldn’t be with my friends in the hospital that day but instead I remembered them, I prayed for them and longed for the day that they will be able to join me, once again, in the “Well World” with me, too.

Maintenance

2009-12-28T19:02:00.000-08:00

Okay, so I know I just wrote an article about tolerance and understanding but the other day when I was standing in a line I almost lost it. The lady behind me patted Yousuf on his head and asked, “Where is your hair?!” Deep breath but still left breathless and speechless I left the place of business. I drove off in my car trying to hide my sniffles while Yousuf asked me what I was doing. I didn’t want to talk about it so I changed the subject and acted excited about our new chosen destination. The dark corners of my heart almost shadowed over the rest of it as I had a glimpse of me slapping the lady. My only regret was not to tell her politely why he was bald erasing her obvious sheer ignorance in hopes it never happening again. I hope no one else has to suffer the consequences of my poor decision on not taking the time to utter a few words of wisdom while tucking away those emotions.

Good news today, Yousuf is officially in Maintenance! The nurses seemed more excited than me. She gave Yousuf his final push of chemo and de-accessed his port. She left with a smile saying, “See you in a couple weeks!” We no longer have to go every week now. Every two weeks Yousuf will need to check his counts and once a month he will have chemotherapy. Every three months will be a spinal tap with chemo and a WHOLE LOT of oral medications to take at home. The phases now are in three month intervals, with oral medications changing each new one. What don’t change are Yousuf’s steroids the first five days and his usual antibiotic once a week three times.

Today when Yousuf had his PACU, I sat on the bed next to him while he was moaning nervously watching and listening to the doctors, nurses and anesthesiologist surround us on the bed. It’s like an orchestra listening to them is perfect rhythm.

“Yousuf Basyouni 9034105.” Than at least two other person will repeat it, “Yousuf Basyouni 9034105.”
“Yousuf Basyouni 8/2/05, getting an LP with methotrexate, agreed?” Than three other people simultaneously say, “Agreed!”

“Mam, you are Yousuf Basyouni’s mother birthdate 8/2/05?” Sounding robotic while exposing his wrist tag for me to confirm the information and hands me the paperwork to sign and initial. The doctor and anesthesiologist introduce themselves only seconds before administering the anesthesia. I feel Yousuf go limp in my arms and they take him from me laying him on the bed. We immediately leave while they shut the door and in no time have him on his side, pants down and shirt lifted. I stood right there watching in the tiny vertically rectangular window in the door. They were preparing something on the medal tray hidden by the doctor. I started to get anxiety as I was preparing myself to watch the whole thing this time, while nobody stopped me. Abu Yousuf was fighting Omar to get him in his stroller while I stayed glued to the window watching how Yousuf still had movement and what seemed to me like a slight awareness of what was going on around him.

I had asked him before what it was like to be asleep in there. He told me, “They stick me in my back.” I was shocked to hear him say that. “Does it hurt?” I would ask. “Umm, yeah it hurts.” Then he showed me the band aid on his lower back. So I wasn’t sure if he was saying that because of the band aid or if he really felt anything while under.

So I stood there and watched and was amazed that nobody knew I was standing there the whole time. After preparing what I had assumed to me the needle on the medal tray, but I could be wrong, they started to clean his lower back. I knew the next step would be big, I was getting nervous. It was then that a face appeared staring right back at me in that tiny window blocking my view entirely. While everyone stopped and looked up she opened the door and with a big smile and nice tone of voice pointed to the right and said, “The way out is that way.” I just smiled and said, “Oh okay.” Knowing full well we both knew that I knew the way out. And I was so close.

Yousuf recovered well, alhamdulilah, though he seemed a bit tired and anxious to go to bed earlier than usual. He started his doses of medications and went fast asleep. The past 6 months has felt like a totally different dimension of time. Life has changed significantly mostly for Yousuf. But in the end of it all we have gotten through it and succeeded it. Hopefully and insha’Allah the next few years will be as successful as the previous months.