Blast From the Past
May 24, 2013 by Laura Pita
Today was a chemo day. At this point, chemo is no big deal for us. I picked Josh up from school at noon, put some numbing cream on his port so he wouldn’t feel the needle when he is accessed and off we went! Most oncology patients receive a port when they are first diagnosed, which allows a direct access to their blood stream without having to stick a needle in their veins.
Here’s a pic of Josh, all accessed and ready for chemo. His port is in an unusual place. Normally, ports are placed closer to the collar bone. Josh’s port is on his ribs because he plays tackle football, and this placement allows his shoulder pads to protect the port. Yes, even with cancer, my boy plays tackle football.
While we were waiting for Josh’s chemo to be made, I whiled away the hours reading the posts on one of my ALL Moms groups. The conversation was about their children’s blood work at diagnosis, which led me to think about Josh’s blood work. On November 23, 2010, Josh’s blood was made up of 23% blasts, or cancerous cells. On November 24, the day Josh was officially diagnosed, his blood was 25% blasts. His bone marrow was 85% blasts. The cancer cells were taking over my son’s blood.
He was so little, so young, so innocent. He had no idea of what he would endure.
Because Thanksgiving fell on November 25, Josh didn’t start chemo until November 26th. That day, his blood was 28% blasts. Josh’s port was inserted in the morning and at the same time, he had his first spinal tap with chemo flush. Josh was hooked up to chemo, and then we began to wait. Josh’s chemo needed to kill the blasts, but it couldn’t kill them too quickly, because that would cause another, serious issue: tumor lysis syndrome. Tumor lysis syndrome is a group of complications caused by the break-down products of dying cancer cells. If the blasts die too quickly, Josh could go into renal failure.
Fortunately, the oncologists at Joe DiMaggio know what they’re doing, and by November 27th, Josh’s blasts were down to 16% and by November 29th, they were in the single digits. The chemo was working, and Josh’s kidneys were just fine. Josh was finally cleared to go home on November 30th: one week after he was admitted, with only 2% blasts in his blood.
It was during this time that I was first introduced to the Leukemia and Lymphoma Society. I was given informational brochures that answered many questions that were swimming around in my head. I was told about support groups, patient co-pay assistance, LLS discussion boards. LLS offered a lifeline as I was drowning, in a haze, lost and confused.
Fast forward two years and three months later. Chemo is routine. There is one week each month that I dread: steroids week. Josh is playing baseball, attending school, camping, living life. I now help parents of newly diagnosed parents find their way through the confusion and despair that encompass a pediatric cancer diagnosis. We have found our way, and life is good.
I Hate Cancer.
Feb 04, 2013 by Laura Pita
I am sitting here because I really, really don't want to fold the laundry. As I've been sitting here, my thoughts turned to cancer, and just how much I hate that stupid disease. It stole my mother, my grandmother, Jorge's father. It has tortured two aunts and an uncle. It is currently trying to take my sweet baby. I hate it...I hate that my nephews won't know my mom. I hate that my grandmother never saw her first great-grandchild, though she did know that he would be a boy. I hate that Josh lost a year of his childhood. That's a lot of hate. But I will not allow cancer to change me. Instead, I will love more fiercely than ever before. I will be kinder. I will be more giving. I have made new friends, wonderful friends, who I never would have met had I not taken this detour. I will be grateful. Grateful that Joshie is battling like the warrior he is. I will be strong. Strong for my family emotionally and strong physically as I pound the pavement in search of a cure. I will always hate cancer, and I will defeat it. Want to help? Click right there...see the little button on the right? That's the ticket!
One, dollar, two dollars, it all adds up and sends us in the right direction. Thanks. ♥
And the Chemo Goes On....
Jan 18, 2013 by Laura Pita
Josh is two years, one month and twenty four days into his battle. In his current phase of treatment, we return to the hospital every 84 days for our "long day," which consists of a spinal tap with chemo (methotrexate) flush and a second (nasty) dose of vincristine. The spinal tap is necessary because oftentimes, the leukemia cells lurk in the central nervous system, but are too tiny to detect. The methotrexate is supposed to take care of that. But the central nervous system is where those damn leukemia cells will most likely reappear in the case of a relapse. So, every 84 days, I wait with my nine year old son while he is sedated, and then I wait to hear that (fear #1), he has woken up from the sedation and (fear #2) I wait to hear nothing. For a week. Because hearing nothing means that he has not relapsed. After seven long, worry-filled days, that fear is shoved as far back in my brain as possible. Until spinal day rolls around again.
Joshie, ready for his spinal. With him, as always, is the Undertaker.
Triple H came along for the fun this time.
Today, another fear is at the forefront of my mind. Josh's oncologist is concerned that the treatment of his central nervous system is actually damaging him. He has back pain and periodic numbness in his legs. If there is damage and it is bad enough, they might stop this part of his treatment. They might stop the treatment that is preventing a relapse. That is saving my baby's life. And that scares me to my core. So, Josh laid down on the MRI table, kicked me out of the room and left me to pace. And worry. And pace. And worry. And pace.
Fortunately, after 45 minutes, Joshie emerged, tired, but none the worse for wear. He said that some of the rhythms of the MRI were "catchy".
Leukemia is often dismissed because the cure rate is so high in kids. I've been told it's not "real" cancer. But it is the number one childhood cancer diagnosed. I'm talking about thousands of kids who are diagnosed each year. And hundreds of those kids die every year.
Tiffany died at age 16 after a bone marrow transplant.
Taylor is forever 12. She, too, succumbed after a bone marrow transplant.
Logan, 12, was in the same phase of treatment as Josh. He got the stomach flu, became septic and passed away in his sleep.
This is the fear I live with daily. And I will live with this fear until the day I die, or the day a cure is found. I will run until that day. With your help and with your dedication, we will win this fight. We WILL find a cure. My family is counting on it.
If you need a little enticement to open your wallet, please let me introduce you to my friend, the Mad Hatter. I, along with my friend Shari, am hosting the Mad March On Cancer Virtual Run. For just $30 (plus eventbrite fees), you can run walk or crawl a 5k or a half marathon (in a location of your choosing) and receive my little friend as a reward! Plus, you'll have a personalized bib to wear while you're running. You'll be the coolest kid on the block!
Nervous about all that running at one time? No problem! You can break it up over the course of a week. All that we ask is that you complete your run between March 17-24. You can do it! And you'll get an incredible warm, fuzzy feeling, knowing that not only did you complete a 5k or half marathon, but you're helping to save a life. Absolutely every penny (after the cost of the medals, bib and shipping) will be donated to the Leukemia and Lymphoma Society.
To register, go to: http://marchoncancer2013.eventbrite.com/#
Where it asks if a Team Member referred you, please put down my name. Laura, LP, or Wonder Woman will all work. You'll get some awesome bling, plus my never-ending gratitude.
The Further Adventures of Joshie Robert Superstar
Jan 02, 2013 by Laura Pita
Josh met his idol, Eli Manning. In fact, he met the entire team.
It was a dream come true for him, though I wish that it had never happened. Because cancer is the reason that this happened. Josh has endured more than two years of chemo, of pokes and prods. Of needles thrust into his spine. He has missed school. He has spent two Christmases on steroids, which make him tired and cranky. Josh has leukemia, and I would trade this trip, I would trade anything for him to be a normal healthy child. I would give anything...everything I have to be rid of the constant worry I feel. I am petrified that my child might relapse. That when his immune system is compromised, a nasty bug could take hold. The last time his immune system was low, he got pink eye, which lasted for two months. Imagine if he got the flu. He still has 15 months of treatment left.
This is why I run. I run for his health. I run because of the fear that constantly shrouds me. I run because so many people have run to save my child's life. I will run to save others' lives. I will run until there is a cure. Every penny donated is one step closer to the cure. We can do this.
My Fundraising Page
Oct 15, 2012
Cancer sucks. It is merciless. It does not discriminate. It attacks children. But in the depth of despair, there is hope, and there are heroes, those who are stronger than cancer.
I was lucky enough to give birth to my hero. Josh was a happy, healthy seven year old. He was thriving in school and had just finished a fantastic football season. Then, he got a fever. It came and it went. Then Josh's leg started to hurt. Really hurt. His pediatrician ran some tests and when he received the results, he told me that I needed to get Joshie to Joe DiMaggio Children's Hospital right away. Puzzled, I packed up my sweet boy and set out on a journey that would change our lives.
We met with Dr. Cauff, a pediatric hematologist/oncologist on call at the hospital. With his gentle manner, he destroyed my picture-perfect existance. Joshie was diagnosed with pre-B cell Acute Lymphoblastic Leukemia.
Josh has endured a year and a half of treatment so far. He has been absolutely incredible -- even shooting baskets while receiving high-dose methotrexate. Josh will continue with his treatment until March, 2014, but has never complained about it. He accepted it, and is moving on with his awesome life. Is there any wonder that he's my hero?
But there are so many others.
My college roommate, Vicki, succumbed to lymphoma at the age of 26. My Uncle Vince is a lymphoma survivor. Coach John beat lymphoma with a bone marrow transplant. Taylor lost her life to leukemia after her transplant. Carson just had his last spinal tap of his long battle with leukemia. Sativa's grieving parents must bury their baby after she lost her fight with leukemia. Five year old Mikey wears a ribbon in remembrance of his father, taken by lymphoma at the age of 33. Sweet Sophia has been battling in the hospital for two months...she is not yet two years old. Ellie is a survivor after spending much of her young life living in the hospital. There are too many names to list. There are too many patients, too many angels.
I will be wearing a tutu with ribbons bearing the names of our current fighters as well as angels. If you know of someone who is fighting, has already won, or has lost his/her battle, please let me know, and I will add his/her name to my tutu.
Please support me as I run to help the Leukemia and Lymphoma Society in their quest for a cure. We've come a long way in the treatment of Leukemia and Lymphoma, but there are still many more miles to go.