Blessed & Giving Back: The End of leukemia

To read our story from the beginning, click here.

In A Nutshell

Honestly, anything was easier than the first 5/6 months, so we were ok.  Tired of it, but ok.  The trick was not to think beyond the day and keep going.  I was blessed enough not to have to worry about going to work so I could be there 24/7 for my boy.

Joey had so many ups and downs with his blood counts, it was ridiculous. The roller coaster of trying to figure it all out was endless.  When I read back in my notes, I see so many times that he didn’t qualify for his chemo treatment. On 5/9, I had written down that Joey “finally had a good week.” He had made it to school for a couple of days that week.  It was a victory.  I had also written down the many times he threw up.  I don’t remember him throwing up much, but I guess he did.  It all became so routine and a part of our “new normal.”

After the allergic reaction, Joe never spent another overnight in the hospital. He had many more random rashes and puffy red eyes of which there was never an answer.  My guy ended up taking lots of allergy medications along with all the rest of the crap.  I figured out that it bothered me more seeing the rashes than it did him feeling it.  Joe was resilient.

He had more heart problems with crazy triglycerides, high cholesterol, and a murmur.  He always had an issue with cholesterol, but nothing compared to what it became.  We had to add a cardiologist, Dr. Starc, into the routine. (I highly recommend him if anyone ever needs a pediatric cardiologist, and I hope you don’t.)  Since this has been over, Joe’s heart problems have all disappeared.   God is good!

I had a ritual whenever there was any inkling of an illness or a new rash.  I would light my St. Gerard candle (thank you Radesich Family), take the holy oil we had from a Holy Statue of the Blessed Mother crying, (thanks to Dave and Suzanne Gerbosi) and blessed Joe with the oil on whatever part ailed him.  I gave it up to God and prayed it would go away.  Then I would put on my glow in the dark rosary and continue praying. I was a believer!  I was more faithful than ever during that time.

We had to go to the clinic at Columbia Presbyterian every week for chemotherapy and/or a blood test.  On a different day during the week, a visiting nurse would come to inject him.  He missed almost the whole 4th grade school year because of the poor blood counts. But the next year he was at school the other three days that he wasn’t getting treatment.   We got to the point that we would go to the hospital either early in the morning or later in the afternoon so he would miss less school.

He did everything a 5th grader should do; including graduating from 5th grade. With, I have to add, a standing ovation from the crowd.  I may have shed a few tears… so much love and so incredibly blessed.

Emergency Room Visits

He would get sick with a fever numerous times over a couple of years, and we would have to drive to the ER at an unGodly hour.  Temperatures ALWAYS went up in the middle of the night.  I remember one time it only being 12 am, and we were thrilled because we could hope to be home by 3ish.   When the fever came, we had to go to Columbia on 161st, not the local hospital.  It isn’t pretty down there at 2 am, but we always had priority because he was a cancer patient.  At least I could go home at 4 or 5 am and sleep late, Freddy would have to go to work, but ‘Friends of Joey’ allowed me to stay home.  We were blessed.

People and children were on beds lined up in the hallways – like a war zone, only with toddlers running around.  Thank God, they have a new ER now.  I had mentioned previously how the nurses were so bad at accessing the port.  Painful access was never a good thing in the wee hours of the morning.  I can only hope that they stuck with the program and the ER nurses were trained at the clinic and are more proficient for the other families with cancer kids.  It felt good to have facilitated a change that would possibly benefit other children.  I hoped I could make a difference.

Change of Perspective

I saw many Moms holding their babies while getting treatments.  Young little ones were crying while nurses try to draw blood.  There was a time that I remember looking around the clinic, and I saw a young man for the first time – he was so thin and frail. He mostly kept to himself and hid behind the curtain. (We didn’t do curtains anymore.)  That young man, John, is a survivor, but it was horrible to see how sick he was. He had a tumor in the part of his brain that made him throw up…so he did often.  That young man was so weak, but he was also a Jets fan, so he was resilient.

But when I saw kids with brain tumors and babies who were sick, I became grateful that my child only had leukemia.  My perspective changed and I felt blessed, his fight was not as difficult.

There were a couple of rooms that some children went in when they were brought by ambulance for treatment.  If they were in those rooms, you knew it was a dire situation.  The rooms in the back corner of the clinic were worst than the ones toward the front.  I was only in one of the front rooms once when Joe had a severe rash.  We needed to make sure it wasn’t highly contagious.  I was lucky that was the only time we would have to be in there.  

There was another young man in particular that I watched get weaker and weaker until he could barely walk.  I even saw him one night on a stretcher in the emergency room, and he smiled and waved.  The last time I remember seeing him in the clinic, he was a ghost of a person with a blank look.  This time he didn’t say hello.  I prayed for him.  After I didn’t see him for a while, I asked one of the nurses what happened to him, but she didn’t know who I was talking about.  I didn’t know his name, shame on me.  I can still picture his face.  

Blessed & Giving Back

Joe participated in St. Baldrick’s while he was sick and the year after.  When you realize it isn’t all about you, it is time to give back.  After one year out of treatment, everyone but Bella had shaved their heads.  A 14-year-old girl is not likely to make herself bald, and she had been through enough.

The year we all did it, I had a contest that I would color my hair whatever the highest bidder picked. Well, my dear friend, Patti Barry donated $1000 and said pink.  Then her husband gave $1001.00 and requested the New England Patriot colors!  As a Jet fan, you know that hurts … but for that kind of money, I sucked it up.  We raised over $10,000 that year.  Time to pay it forward, we were soooo blessed!

Then there was the other time I got a kick in the butt from another Patriots fan — the things I will do for the common good.  Joey’s leukemia buddy, Frankie, a diehard Patriot fan and I made a bet.  We were at the clinic, and the Jets happened to be playing the Patriots the following weekend, so we bet on the game.  If the Pats won, I would wear a Tom Brady jersey the next week at the clinic.  If the Jets won, Frankie would have to wear my Jets Jersey.  Well, guess who lost?

I knew I was going to lose, but I am always hopeful … no matter what the circumstances.  I remember he and his Mama walking in the clinic holding that jersey with big smiles on their faces.  Not only did I have to wear the jersey, but it stunk of sweat.  He wore it during the game on Sunday night, and we were at the clinic on Monday morning, so there was no time for washing.  I wore it happily.  Anything to make the clinic a happy place and put a smile on the face of a young boy.

Frankie and Joey finished around the same time, but Frankie had a different variety of ALL. He would relapse a couple of years later, was the recipient of a stem cell from one of his brothers and is doing well.  He had suffered some permanent damage to his body from all the treatment, and I continue to pray for him to have a full recovery.

Joe has barely been sick with a cold since he had leukemia.  A blessing that continues to this day!

Blessed with Fun During Cancer 

Believe it or not, we had some fantastic times during the hell Joe had endured.  You certainly learn to appreciate the quality time and just living.

During the American Idol seasons, when the shows went to the top 10 and people got kicked off, they came to the hospital to do a little private concert for the pediatric patients and children getting treated for cancer. If the kids couldn’t come to the show, they would go to the rooms and visit.  We must have seen about 10 of these shows.

There were visits by the local FDNY.   This group of firemen had recently started a charity organization called the Lil’ Bravest.  They started this endeavor in honor of two firemen that had passed away in 2010.  Once a month they came with pizza, and at Christmas, they had come with a special hot lunch for everyone. These men would hang out and chat with the kids, bring t-shirts and some of us Moms would even talk to the handsome firemen.  It was a nice change of scenery for us all – God Bless them!  Lil’ Bravest is run by donations, and they hold charity events to support this cause.

There were the massage therapist ladies who would rub essential oils on the kids and even some shoulders of the parents. Joey even had a couple of tries at acupuncture!

We celebrated birthdays at home and the hospital.

Our Last Days of Everything:

I took pictures as a reminder …

And then on 9/25/2012, we came home to this:

After twenty spinal infusions, a couple of hundred blood tests, countless doses of steroids/chemos & 760 days later,  patient #5829563 was done.

To celebrate the end of a very long two years, we had a party with a blow-up castle, lots of food and alcohol and invited everyone to say thank you for all they had done for us over the two years.  It was to celebrate and acknowledge how blessed we were being surrounded by so much love and support.

• 

• 

• 

• 

• 

• 

• 

• 

• 

Last September 2017, Joey celebrated six years of being cancer-free, and we got the green light not to go back again.  Doctor Levine said that selfishly she could tell us we had to come back because she wanted to see Joe as he was always cracking her up, but she left it up to us.  We aren’t going back.  This is one Mom who never wants to have to go to a hospital again – unless a grandchild is being born.  I know that isn’t reality, and there were some lovely people and nurses that I would love to bump into, but PTSD keeps me from ever wanting to walk in that door again.  I really do hate f*ing cancer.

The End!

Update **This week, Joey celebrated 7 years of being cancer-free. Please visit my recently updated store, For A Cause. 25% of the proceeds from Cover Me with Love go to The Leukemia & Lymphoma Society. Anything from Be Kind gives 25% back to National Alliance for Mental Illness.**

If anyone has somebody, they need prayers for, please let me know. I believe, and prayers are free.

I am always here to listen and offer any help I can to a particular situation.  If anyone knows of a mom or family who has a child with cancer or leukemia, please feel free to share my page or contact information.  I would love to help or support in any way I can.

Much love always!

Sandy

#enlighten #empower #inspire #educate #BeKind  #cancersucks

If you want to jump ahead to see how far we have come since the end of cancer, read this story here … but don’t put away the tissues!