My Heart: Joey & leukemia, Part 4

 You can read Part 3 here. 

I no longer had Freddy to get me coffee, and that was a problem.  No more husband to hold my hand and be my punching bag while my heart was breaking. There wasn’t much sleeping going on, and I just needed that cup of caffeine first thing in the morning.  Coffee would get my blood pumping and my brain functioning.  It would certainly help make the start of the day doable.

The problem: I had to go out of this area, to the elevator,  and down four floors to where the coffee shop was located.  With any luck, nobody would be on the line and under perfect circumstances,  I figured I could do it in 5 minutes.  Joe would still be asleep when I got back in the room.  Sounded like a plan.

On my way out, I saw a nurse and asked if she could keep an eye on Joe.  She said yes, but if somebody rang her bell, she would have to go.  Ok – I felt better. I went as fast as I could, cursed the elevator when it wasn’t there and paced back and forth until it came.  Pleading in my head, please God … please God, let the elevator door open up.  It took forever.  Probably 30 seconds, but it was eating into my 5-minute plan.

I got in, and when the door opened, I bolted to the coffee shop.  With heart palpitations, I got my coffee and left $3 on the counter.   I informed the cashier that I had to get back upstairs and ran back for the elevator.  Breathing a sigh of relief that I was back on the floor, I opened the door and Joey was trying to get out of the bed to go to the bathroom. 

No nurse … I should have never left the room.  It wasn’t her fault; my guy was not the only sick child on this floor. Now I was sick.  Sick to my stomach that my child could have fallen or pulled out a line or something. That didn’t happen again …

Enough About Me – Next Bunch of Days for Joe

Meanwhile, Joe and his sensory issues could not deal with the pic line or the tape that kept it in place.  That line was pulled out, and a mediport was put into his chest.  A little more invasive as it was done surgically, but seemed to be the right choice for us.  Nurses would have to access the port through his skin with a needle every time he would get chemo or antibiotics.  Joe would watch intently every time, but I could never look, but held his hand and cringed with my eyes closed. It just freaked me out, and I do not have an issue with needles.  I had a problem with the pain that could be inflicted on my boy.

(Most times it was ok, but sometimes if a nurse wasn’t proficient enough, it took several times to access the port and became torturous. At one point, after a visit to the ER at 2 am, and a nurse could not locate it to give an antibiotic, I had to make a significant complaint. The result was ER nurses would have to spend time in the clinic to learn how to access a port.)

Chemo, Meds & His Heart  

His white blood cells were tanking, and we needed to keep visitation minimal.   The steroids were making him eat, but his vitamin count was plummeting.

The biggest concern was his calcium and vitamin D, as both were really bad.  If he fell, he would be susceptible to bone fractures. They gave you Pediasure, as they do a lot of cancer patients.  Nobody likes that crap, nor did Joey.  He would not touch it, and as much as I begged and pleaded for him to take a sip, I couldn’t blame him.  The chocolate flavor didn’t work either.

It’s one thing when the doctor tells you that his hair is going to fall out.  It is a whole other thing when you get out of bed one morning and find hair all over his pillow and a bald patch in the back.  I touched his head and hair was all over my hand.  I freaked a little bit and told Freddy when he came that night; he had to shave his head.  Waiting for it to fall out would be too agonizing, and I would probably obsess over that like I was with the heart monitor.   That was the one thing I could make less torturous.

A lot more platelets were given to him, and his calcium was so low that they want to add that to the growing list of medications.

Break from the Hospital

Day 13:  I had finally left the hospital for a couple of hours.  It was Bella’s first day of middle school, and I had to be there for her.  My mom came to hold down the fort.  Nothing got past her, so my notes were thorough.  I had known Joey wouldn’t be getting any chemo that day or the next.  Another infusion of platelets and Father Joe, Father Donald, and Bill, the guitar guy were on the visitor list.  God was good and made sure it was a relatively easy day so that I could take care of my girl.

(Speaking of my Mom – Thank God for her!   She came every day!   Whether she was with one of my brothers or on her own, she was there.   My mom lived an hour and a half away from Columbia Presbyterian and made that drive every day.   She also convinced me that it would be ok to leave for 10 or 20 or 30 minutes and I would feel better.   Even if it was just to walk around the block, and it did make the day more tolerable.  A few days, I would go jogging or walking down to a park by the bridge.   If my brothers brought her, one of them would come with me.  I don’t know what I would have done without her.  Our circle of support kept me going.)

Joey was triple blessed!  Two priests and our favorite guitar guy.  Bill came 1 or 2 times a week and took requests for songs from the kids to sing.  Joe loved that!!  Guess what his choices always were?  …  Van Morrison and The Beatles!  Joe was happy and so was Bill because he got to sing something cool!

More Heart Wrenching Side Effects

Day 14:  Even more platelets and blood to boost his iron.  We were also waiting for an EKG. They had to bring one to the room because he couldn’t go anywhere. The EKG never did happen.

Day 15:  His platelets and his iron were okay, but his heart rate was fluctuating from 120s to 150s.  After a bit of freaking out, the EKG machine came.  Joey had sinus tachycardia with irregular heartbeats.  Now we had to wait for a cardiologist.

They couldn’t pinpoint what the problem was.  I was told it may be anxiety or there could be something wrong.  NO SHIT!!!  In all my papers with the drugs and side effects, none of the side effects had said tachycardia or high heart rate.  One of them could cause a lower heart rate, as it had the week before, but none should have caused that.  I guess Joe was an anomaly.  No answers, but we could treat the symptom with Ativan.  Ativan is like Xanax.  I don’t like it, but if it made him feel better, I would deal with it.  It had not worked as well as I had hoped, but he fell asleep and his heart rate went down to the 110s.

Day 16:  The next morning he seemed happy,  but then climbed in my bed and started crying.  He missed his daddy.  Freddy was there for most of the first ten days, but now he was back at work.  Joey was entirely out of sorts.  His heart rate was still high, and now my baby was on Ativan, steroids, and chemo – WTF!

It is hard when you have no concept of what your child is aware of or what is going on in their head.  Having DS made the communication so much harder because he couldn’t articulate what he was feeling.  I know he had to be all effed up and confused.  I certainly was and my heart hurt for my little guy.

They had to check his thyroid and urine because they couldn’t get to the bottom of the tachycardia and the Ativan did not work.

Where the frig was my doctor?  Doctor Levine was on vacation.  I understand everyone needs a vacation, but not when my kid is sick.  You can go when nobody is sick.

Day 17:  High levels of protein in the urine, so we had to check kidneys for possible damage.

Good News/Bad News

Day 18;  Bad News was another spinal with chemo, and because of the damn vacation, it would be done by a doctor I did not know.  Good News was he wouldn’t have any more drugs for a week!  Except, of course, the steroids. That never ended.  Also, that good news lasted for a whole minute…

Joey’s white blood cells were at .2, which meant we were at rock bottom.   At .5 you are considered severely neutropenic.   That was the goal, but it didn’t have to go that low.   He had almost no immune system.  The slightest germ had the potential to kill him.   Now at best people could wave through the window and say hello.  Gowns and masks were the fashion protocol.

Day 19:  The shit was hitting the fan with the heart rate, and I asked to see the head cardiologist or oncologist or somebody of authority.  His heart rate had gone up again and was in the 120s.  He was given blood with the hope it would bring down the heart rate.  After the transfusion, his heart rate jumped back up to 140s.  Clearly, it wasn’t that, so I needed somebody to tell me WTF was going on.  He did another EKG, and the conclusion was the same, sinus tachycardia.

This time they had told me it wasn’t dangerous.  Oh ok.  It wasn’t dangerous that my son had leukemia, had no immune system,  was experiencing sinus tachycardia and medication wouldn’t work.  We just had to deal with it.   Kidneys and urine were fine, so that was good news – yay.

That evening with me panicking and the heart rate not going down, they want to give him Ativan again.  I told them it wasn’t working and it only made him lethargic.  I explained that I was told they were looking for something else to try. Why did one doctor tell me it wasn’t working and now another was telling me that was what we were going to do?   Another reason why I was afraid to leave the room!

Day 20:  Joey was still severely neutropenic and now slightly malnourished.  He fell getting out of bed because his legs were shaking.  He also had diarrhea.   The good news was the heart problems seem to be subsiding.  Again, that good news only lasted for about a minute …. 

Part 5 here!

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Thank you so much for joining me on this journey of remembrance and bringing light to Leukemia in honor of September being Childhood/ Blood Cancer Awareness Month.

Much Love Always, Keep praying for others who are fighting, Always be kind – you don’t know what somebody is going through or have been through in their life.

Sandy

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