Blood Counts: Joey & leukemia Part 7

Part 6 here

Next Phase:  Spinals, Steroids, and Shots … Oh My

We ended up with a long delay after the horrible ordeal in the hospital.  We had to go to the clinic every few days, but Joey’s blood counts were low, and he wasn’t able to start the next phase for 15 days.  The next stage had four spinal infusions within two weeks with all the other steroids and chemos.

The spinal infusions were done on an outpatient basis. We would take Joey to the endoscopy suite, go through an hour of waiting, answering questions and prepping. Then they would knock him out, stick fucked up drugs in his spine, and he would go home a couple of hours later.

It was all so scary.  I didn’t understand how doctors could send him home with me like this. The other spinals were done during inpatient stays.   It isn’t as though you want to stay there, but as a parent – you panic.  What if I can’t take care of him?    I was lucky to have my mother with me most of the time.  She never panicked, and if she did, she didn’t let you know.  My mother kept me strong.

When you walk into the OR rooms with them, they explain what they are going to do every time.

To Joe:

“What’s your name?”        Joseph Riguzzi
“When were you born?”     April 15, 2001

To me:

“He’s allergic to morphine, levaquin, leucovorin, tape, and latex?”    Yes.
“Is there anything else?”       Not that I am aware of … yet.

Every time with every spinal, every drug, every shot, every visit, and every different nurse, etc.… we must have repeated that 1000x.

He wasn’t allergic to latex or tape, but I threw it in there anyway.  Otherwise, they would tape his eyes shut because Joey’s eyes didn’t always close.  The medical personnel didn’t like to see the eyes rolling.  Oh well!  I didn’t like seeing his eyes taped shut.  So I guess I had that little bit of control.

Joey was always saying hello and chatting up the doctor and nurses and then introducing his Grandma and me to everyone.

Me, fake smiling: 

“Okay handsome, I’ll see you when you wake up.”

Joey, giggling from the drugs:

“Ok, Mommy, see you when I wake up.”

You never get used to was seeing your child strapped on a table and knocked out.   It is a horrible thing to think he may never wake up, and even though the likelihood of that happening was rare … so were all the other freaking side effects he had already gotten.  Not having control was extremely difficult.  I had to relinquish it to God.

I would tear up, quickly gain my composure and go to the waiting room until a nurse would tell me I could go into the recovery room.   When he woke up they would take his vitals, give him juice with a snack, and send us on our way.  It was a revolving door of kids coming and going.

A New Drug is Introduced

That phase was also the start of chemo called asparaginase.  Asparaginase was administered into the leg muscle and came with its own worries. The shots were supposed to be for 30 weeks.  After each injection, he would have to wait an hour to see if he had an allergic reaction.  It may not happen the first time, but it could happen the 3rd or 4th or 17th or 30th.  The response could be anaphylactic.

Joe does well with all of it.  The spinal infusions went well, as did the first three asparaginase shots.  We even got permission from his doctor to take a trip to school for a couple of hours and participate in the Halloween parade and party!  The school disinfected his desk that was adorned with a big bottle of Purell.

Wow, what a difference from a few weeks prior.  It was an uplifting two hours of a little normalcy.  However, two days later Joey was congested.  Probably just a cold, lungs were clear, blood counts were okay, and he was able to have his last spinal for this course.  Congestion and anesthesia – not good, I was understandably paranoid, but Joe did fine.  Things are certainly looking up, but we stayed out of school for a long time.

Some Blessings and Some Angst

PT, OT, and tutoring had started at home. He had lost a lot of weight and muscle tone.  We were so blessed to have his same OT from school, his PT from when he was a baby, and his kindergarten teacher agreed to be his tutor!  Great people were supporting us!  Our pastor, Father Joe Blenkle, came every week to visit, say a prayer and give communion.  Janan Lane, our religion director, and a friend came after mass on the weekends.  Another special friend brought us candles of St. Gerard, the patron saint of mothers.  A candle I had lit whenever I had a worry and would keep it burning all night.  We were surrounded by God in our home and faith was stronger than ever.  It had to be.

That last phase had come to an end, and he did great! We had a whole week without having to go to the clinic in Manhattan.  We could do this. Then he got a mystery rash, and we ended up going down there anyway.  It remained a mystery, but this was still way better than the first couple of months.

Next phase would last for 30 weeks.

We have 26 more weeks of Asparaginase at the hospital every Monday, but the other chemo, methotrexate, could now be given at home via his port by a visiting nurse.  That was good news but scary at the same time.  One less trip to the hospital, but there was a comfort and feeling of safety that goes with being in the hospital.

Joe had low blood counts and couldn’t get his chemo to start the cycle, but he did get shot #4 of asparaginase.  We stayed for an hour, no reaction and went home.

The following week, his blood counts were still too low for his regular chemos.  Another week we could not start the next phase.  I was beginning to get nervous that this would mean the possibility of relapse.  Then the doctor came and told us Joe had a severe protein deficiency and it needed to go up quickly!  A deficiency could break down any muscle mass he had and leave him open to many infections.  He could, however, get shot #5?! It’s just crazy … Me, my mom, and Joe wait for the hour and no reaction, so we go home.

Here We Go Again – 11/22/2010

Driving home, he seemed a little woozy, and I asked if he was ok every 5 seconds. “I’m fine, Mommy.”  We get back home, and a few minutes later, Joey had a rash, and his lips looked a little swollen.  I called my favorite nurse friend, Denise Ciarduillo. I don’t know why that was my first reaction, instead of 911. Maybe I was trying too hard not to panic??  

She was over in less than 30 seconds and yelled at me to call 911, while she was giving him Benadryl.  It seemed to work, but then he started throwing up.  The ambulance came and took us to Westchester Medical Center.  There hadn’t been any time to go to Columbia in Manhattan; the reaction was anaphylactic.

They gave him prednisone and his blood counts went through the roof, That meant his body was fighting and a good sign.  We spent the night, and I swore I would never go back there again.  It was a large floor and one nurse. When the rash started to come back earlier than expected, I was pressing the button, and nobody was coming.

I had to run through the halls, leaving my child to find a nurse to help us. Then I would circle back every minute to check on him.  When the IV ran out, I had to keep hitting the “stop beeping” thing on that box and leave again to find a nurse … over and over.  One nurse on a floor of sick children.  Damn right, I complained!  I was told it was a county facility and this is how it was.  In other words, it was a money thing.

We went home the next afternoon, and the rash came back again, so I sent pictures to Dr. Levine.  He was not anaphylactic anymore, but the rash was crazy!

Joe slept with us that night, I lit my St. Gerard candle, said my prayers and the next morning, it was all gone.  Just like that!  But now I have another thing to add to the allergy list.  Happy Thanksgiving!

Good News/Bad News with Blood Counts

Blood counts were finally right, and with December, we started the next phase 3 weeks late. It’s crazy when you’re happy because your son can get his chemo.  Due to the allergy, he couldn’t take the asparaginase anymore so we had a different form of the same drug.  Because of the different intensity and volume, this new drug had to be given in two shots, one in each leg

A visiting nurse finally starts, and she is lovely!  For the time being, my angst over getting chemo at home had been assuaged.  We finish and complete the 3-week cycle without another incident.

Next cycle delayed due to poor blood counts.  Merry Christmas and it was terrific!  We finally got permission to do something and saw Elf on Broadway! Due to a blizzard in Chicago, a family could not make it to the play and I bought the tickets on eBay for $30.  I had never even been on eBay before – God was good!  It was one of Joe’s favorite movies, and we were going out for the first time since August.

Fast forward to 1/17 and Joey was still not qualifying for chemo.  I was seriously panicked.  What did that mean for a relapse?  We were officially a month of no chemo.  In the meanwhile, because of the constant delays,  Doctor Levine had done some genetic testing.  Remember last week’s story and the problem with the methotrexate that almost killed him?   Well, it turned out he had a genetic mutation that kept him from metabolizing the methotrexate!  A small amount in him would work the same as a hefty dose in other kids.  In other words, it could have killed him.  My fear had been real.

We do a bone marrow test and thank GOD, it was good, and even with all the delays, he was still in “remission.”

Next two weeks blood counts were good, and chemo doses cut down to 1/6th of original dose.  We were doing a trial and error thing to see what dose of medication he could take.  On 1/31 he gets permission to go to school 1/2 days for three days a week.  That never happened.  The low blood counts started all over again and no chemo.  The problems would continue through February.

Community Love 

However, it wasn’t all bad, because, on 2/11/11, I felt so much love, that I knew everything was going to be all right!  The best friends, neighbors, and fantastic community members had a fundraiser for us.  There was a band, beer, and dancing.  All my favorite things!

We would not have made it through financially without the generosity of a beautiful community, family, and friends.  I had to quit my job and could not work for over two years while Joe was sick.  It cost thousands of dollars just in parking, tolls, and gas.  That evening was an absolute blessing to us.  We love you all so much and are forever grateful! 

Next week – The Final Episode!   I don’t know how I am going to cram it all in – but I will!

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I would like to thank all of you for the prayers for my friend, Teri.  Sadly, she passed away this past week due to complications from leukemia.  Her passing made the fact that there needs to be more awareness, even more glaring.  She was a beautiful soul and if you are not a subscriber, I have attached my tribute to her here.

To help raise money for awareness, you can click on this link.

25% of the proceeds from the Cover Me with Love line, go to leukemia & Lymphoma Society. Spread some love and give back at the same time!

Much Love to All & God Bless,

Sandy

#enlighten #empower #inspire #educate #cancersucks