A Heart Found

Periwinkle Family Camp: Arriving

It was a long rainy drive to get here but after busy streets and long dark wet roads we arrived to Camp For All. We joined with 7 other families and counselors, whom which most were long term survivors. We all sat in a covered basketball court around a fire, which huge fans controlled the smoke. We all introduced ourselves and told our story why we were there. There were some with Leukemia, just like Yousuf, one girl early in her treatment. Another boy who finished his 3 ½ year treatment then relapsed 4 months later received a bone marrow transplant and is doing better now. There was another girl, due to her cancer, had to get both eyes removed. Our retreat was shared with a mother and son who went through ALL, and finished treatment for a while and are doing great.

There was marshmallow roasting, smo’res and skits. We all stood in a circle side by side and sang a song, “The world’s greatest” with “dance moves” to the song, all except the little blind girl who stood next to us. I glanced around the circle at the enthusiastic dad clapping and smiling, the long term survivor sitting in a wheel chair waving his hands in the air, the little girl who just started growing her hair back…and Yousuf standing right beside me holding his arms up as if flexing his muscles right after singing, “Hey, we made it, I’m the world’s greatest”. I smiled… what a camp! What a family!

Activity Day

I’m speechless after 14 hours of the most amazing hours of my life. I’m sad to see them gone so fast. Our retreat was lovely, warm and cozy. Originally, I was worried how it was going to be. Was there going to be coffee in the morning? If someone saw that I brought a blow dryer would they laugh at me? I was immediately relaxed when I first walked in the retreat to find the family I shared it with. The mom asked me, right away, if I had a brought a hair dryer because she forgot hers. I was grinning big, while on the corner of my eye I saw a coffee maker, fridge and even the wifi device sitting on the table. That’s a nice way to “camp” I thought.

Yousuf went rock climbing, went on a zip line, did fishing, canoeing, horseback riding, pet ponies, a rabbit named “Pillow” and made some really neat arts and crafts. He even baked cookies and made his own frosting stuffed with blue dye and sprinkles. I took one bite, forced a smile, and stuffed the rest in my pocket for “later”. I won’t tell him the complete truth about that until later.

There were really too many wonderful people I met, great stories I heard and feelings I felt. So, I just thought I would mention some GEMS or awesome moments where I either wanted to laugh, cry or take a deep breath, or just some inspirational thoughts.

Camp Periwinkle doesn’t tell you to shoot for the stars; there… you are the star.

Yousuf raced ahead of me to get his breakfast tray, not telling the server “no sausage” so I had to bring the tray back up and try to explain it to the cafeteria workers. They seemed a little confused on what I wanted, so while I stood there briefly, one of the fathers (who is like 6.5) walked by and asked what the problem was. I just told him my son accidently grabbed this tray not realizing this was pork. He immediately took it and said he didn’t want to see food being wasted. Then the cafeteria lady saw me standing there empty handed asking me if I wanted another tray. Uhh…That’s what I’ve been trying to ask for  I thought! The guy made it easy and made me laugh, too.

Canoeing in the rain with my little 6 ½ year old son and future long term survivor, insha’Allah-God willing, in a camp made specifically for kids with disabilities, specifically for Yousuf. The moment was bliss and the memory forever.

A long time ago Yousuf saw the picture, in a magazine I was reading, of the girl’s brain, which only had half of one. He acted as if he was reaching in his own head and grabbed a portion of his brain and he put his hands out and told me, “She can have half of mine, mama.” After watching the little blind girl win bingo and go up and get a prize, I thought, I wish I could do that with my eyes. If only I could give her just one.

We got to color a pillowcase which read, “Take Me Back to Camp”. It was made for a little girl, who went to camp then had to go back to the hospital shortly after. She cried for them to take her back to camp. She never got that chance. They made her a pillowcase with her words…and story to go on forever.

Hearing the other families call us “family” and the idea of being able to follow their progress in their life has given me excitement and motivation to get the most out of all of this.
Being escorted and served by the people who were once in my shoes was an honor and the priceless gift of hope.

Cancer changed my heart, but Periwinkle filled it with love.

A "wish float" is making a wish then lighting a candle then sending them down the river, only the weather was bad so we made ours standing under a covered basketball court and shivering under blankets. My wish was, “To live in a cancer free world where everyone had a heart of a cancer patient, which is filled with love, courage, hope and strength.” Then I let Yousuf say a wish, which was, “For it not to be cold and rainy tomorrow.” It gave us a nice laugh to go with the tears.

May God continue to brighten up the world, as the fireworks lit up the dark sky that night, with these beautiful children.

Paxton

As soon as we signed in at the cancer floor there was a man, holding a clipboard, waiting to talk to me. He handed me the clipboard that held paperwork for me to sign to give permission that Yousuf could be recorded for an upcoming fundraiser they were preparing for. Yousuf ran over to see their puppet performance while I sat on the couch filling out the paperwork. While flipping through pages on the clipboard a little girl caught my glance as she came running in the room. She ran straight to the colorful cow statue and sat underneath it. It was then that I caught HER eye. Her face lit up and she smiled when she saw me, as if she knew me. She was a very pretty little girl with long golden colored curls framing her tiny little 19 month old baby face. She was adorable and I was delighted when she approached me. Her parents were standing close by but seemingly lost in place and in thought. It was only when she kept bringing me books and dumping them in my lap did they stop and apologize. I told them no need to apologize she is very sweet. Again, her parents would seem to drift off in thought, as if in a new world, not one they seemed to be too happy about being in either. While she was rummaging through the books on the shelf (which she seemed to love) her dad said aloud if there were any Elmo books, since she loves Elmo. No Elmo, so Veggie Tales had to do. So she brought the book to me and opened it. As I began to read to her I realized that maybe that could make her parents uncomfortable since they seemed very aloof and reserved. I asked them if it was okay. Her dad said that she wouldn’t hear me anyway and would just keep grabbing more books. I asked her name and how old she was because she very friendly. They said her name was Paxton and she was 19 months old. It was then that their pager went off. Her dad scooped her up and told her to say thank you, but instead of saying it she and her dad put their hand to their chin used sign language to communicate it me. They walked off and I was left confused and feeling kind of silly. Was she deaf that whole time and that’s why her dad said she wouldn’t be able to hear the book? Or were they just teaching her the sign language as a way to communicate better with her since she’s under the age of talking? Either way that sweet little girl Paxton, with her bright long curly hair, keeps popping up in my mind and my dreams.

I envisioned her journey similar to Yousuf’s. I could tell they were new and theirs was just beginning. I imagined her hair shedding strand by strand and seeing it on her pillow case, clothes, and in her food. Her parents watching their beautiful little girl transform into a bald chubby-faced child they no longer recognized. It was sad what I imagined but it may not be far from the reality, after all they are in the cancer center.

I’m glad that I came across her. I’m glad that I was reminded about “the before” and how seeing the most lively beautiful little person how quickly that image or reality can change with a simple diagnosis….a car accident, an injury or abduction. I confess that, at times when I a person rubs me the wrong way or I find someone I don’t necessarily click with or like, I imagine them bald holding an infusion tower and my feeling immediately changes to that of mercy. You can’t help but allow those images to shake your heart, no matter who it is.

Little kids, like Paxton, like Yousuf, remind us that these gifts, these beautiful things we have, not only in our hands, but our hands themselves are blessings from God. We cannot let ourselves forget that because if we do, we lose the most valuable gift: our hearts.

This is for you, Paxton…an Elmo book you didn’t find that day on the shelf. It will be waiting for you with your name on it. I hope it finds you happy, strong, and with the fastest recovery and healing.

Looking Forward

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

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

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

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

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

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

Lawyer Business

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

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

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

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