Nearing the End

At our last visit the doctor pulled out the road map, the last page, to show me what was left, one more round of vin cristine (chemo) and one more round of his steroids. Dr. Dreyers was very distinguished with her short spiky hair cut and her high heels you never saw her without. She’s only been Yousuf’s doctor a few times over the passed few years but I believe her to be the most upbeat and exciting doctor. Her involvement in Periwinkle Foundation and the camp has proven her to be one of the most sincere doctors, right a long with Dr. Margolin. I have been blessed to have such wonderful doctors at Texas Children’s. Of course, nothing but smiles and a huge sigh of relief filled the tiny doctors office. It was a happy occasion just knowing that the end was right around the corner. Though I feel happy I also feel my levels of anxiety rising. Nearing the end is making me reminisce the beginning and the long bumpy road behind us. I almost feel the same worry I had in the very beginning. Yousuf’s sickness created a whole knew life for me, a whole new purpose. All the hospital visits, the needle sticks, the kicking and screaming - it became so much a part of me. Yes, it was sad and I felt so much pain every time Yousuf felt pain, or was afraid but it became who I am to be the one to feel the pain a long with him. I was the guard to keep the nurses safe from Yousuf’s kicks. I was the hand he could squeeze to reassure him I was still there at times I was unable to hold him. I became used to scanning his blood results: hemoglobin, anc, platelets; and memorize the numbers. I would compare it to the last visits, question and analyze what possible reasons there could have been that it got higher or lower. I’ve had to check medicine bottles on a consistent basis to make sure we had enough until Yousuf’s next visit. There were times when Yousuf would choke on some of the medicines and spit them back up, from the horrible taste, so we run out before the next visit. I would estimate, in my head, a week from his round of chemo to know when his counts would drop. My brain was in constant action with what Yousuf could or couldn’t do, why he didn’t eat very much, and why he was having a temper tantrum. Now, despite it being great news, a joy, a comfort, I’m feeling afraid, confused and lost. I feel as though I have been this jail bird locked away for three years. Yes, it’s made me reevaluate my life, become better and grow, but it has also defined who I am -as a person, a mother. The prisoner, when released, has waited years to be free but once it has been granted feels a struggle to redefine themselves. They definitely don’t want to be who they were before and have been dreaming of who they’ll be next but struggle with the transition as soon as it rises. I’m having the same feeling as I did when I had to let Yousuf’s hands go and just let him walk. I stopped looking through the eyes of an average mother when Yousuf was 3 ½ years old. How will I just be an average mom but still be an extraordinary one? What will I do every two weeks? What medicine will I spoon feed or 7 year old will I cradle after surgeries? Who I will be now? The doctor pulled out that last page of Yousuf’s road map and after all these years it’s finally come to an end. I’m looking forward to the new road to go down, a much happier one, a much greater one… and pray that wherever the road takes us the journey will always make me better.

Cancer of Syria

This one little special boy of mine caught cancer, an invasion of bad cells in his young fragile body. One bad cell that went wrong could have ended his life, just as many have gone through and some have not made it. We cry over those children, we donate for research to help find a cure for those children. Case studies and experimental treatments were all designed to increase the chances of survival. Many many organizations and foundations were created and specifically engineered for children in need of support who travel down the roads of treatments, hospitalizations, and procedures . While I am honored to be served and supported by many, I think about another boy just like Yousuf in Syria, who just watched his family die before his eyes. Where is his child life specialist to hold his hand? Where are all the doctors to fight back the invasion of diseased tyrannical rulers? The pain medications to sooth the wounded hearted following the slaughter of a family member or even an entire family? My child gets to pick a toy from a treasure chest after a needle injection due to the fear and sharp pain. What about the child, who didn’t choose where he was born in the world, but has to choose where he is safest to hide, where he might or might not survive at all. What about that child? What about those families? Who will make their wish, give them a retreat, or fill their hearts with hope? Oppressive Leaders are just like cancer, they destroy our brothers and sisters of humanity. They spread their diseased hearts among their regime and get stronger the larger they get. There is not one right way to fight them or cure to prevent them, but they exist. They kill and they kill until their invasion is complete.

We can’t just sit back and wait for the world to heal itself. We have to make an effort to “fight back” help support, and be there for that scared innocent child, or that mother or father who means the world to that child, the aunt or uncle that is all they have left, or the one individual that is left all alone. What if we left cancer to defeat itself over time? Left the sick to just die? Where would our world be right now? What would our hearts look like? Instead the journey of cancer and its treatments has opened new worlds filled of people who have opened their hands, hearts and minds. It changes far more than just the one afflicted. Maybe the only effort I can make is small but if a simple smile and kind word can sooth my son through shots and drugs then I will take my chance. Spreading love and kindness is the only way to counteract the spread of hate, even if we can only help one heart at a time. Have you asked yourself what can I do to help?

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.