Side Effects/Chemo: Joey & leukemia, Part 6

back to part 5

Back to Day 1: 9/27/2010 –

Joey is admitted back into the hospital to start the next phase.  This particular phase is an extremely high dose of methotrexate.  It was given slowly into the spine over 30 minutes and then infused in the vein over the course of many hours.  The side effects would be horrific mouth sores and vomiting.  At the same time,  he would get another chemo whose side effect was peripheral neuropathy.  The dose of chemo given was so large that he needed another drug, leucovorin,  to rescue him from the chemos.  The plan was to be inpatient for three days.  We had already been taking the glutamine in preparation for the side effects, and we prayed it would work.

The surgery started four hours late, so after not eating from dinner the night before, he waited until 2 pm before he went into the OR.  It seems trivial, but one of the things I did to support him was, if he couldn’t eat, then I wouldn’t eat.  It seemed cruel.  He came out by 4 and was given fentanyl and oxycodone for pain.

After surgery, they brought us to a large room that was like a clinic.  Four people were staying there at a time.  Only one bed had a window, and curtains surrounded the rest of us.  It was the equivalent of being in an ER with curtains and space.  I slept in a pull-out chair because that was all that could fit.  Joey and I were by the door and the bathroom, so we heard every noise, and every pee anyone took.  There was one shower for eight strangers to share. 

The accommodations were horrible.  All the children in this room were here for the same reason and were supposed to go home in a few days.  It was dreary with no air and no sunlight. The side effects of this “space” were claustrophobia and lack of privacy.

Drugs and More Side Effects

Day 2:  Joe slept 10 hours and woke up lethargic.  He was acting depressed and just wanted to go home.  One night had been a teaser.  He had thrown up a couple of times and had a lowgrade fever.

Day 3:  He still had a lowgrade fever, and the left side of his chest swollen.  I worried it was his heart, because of all the previous issues.  The swelling was determined to be due to the port leaking, and they immediately brought him back into surgery to fix it.   Did the methotrexate leak into his body?  They wouldn’t say definitively.

Joey hadn’t been eating anything.  He had only eaten once since we got there and then it was Day 3.  The levels of chemo were so high in his body that they gave him the recovery drug more frequently and increased his IV fluids.

Day 4:  Joe still had a low-grade fever.  The swelling in his chest had gone down and his bloodwork looked ok.  But he was more lethargic than the day before, and his eyes were red and swollen.  I read in my notes “not liking this.”   Dr. Levine had told me just to let him sleep, that this was normal.  If this had been normal, we would have gone home on day three, like everyone else.   

If that continued, we would have a case to get a private room.

A portable toilet was brought in because he could not walk at all.  I had to pick him up and put him on it if he had to go to the bathroom.  Since he wasn’t eating and only getting IV fluids, that wasn’t often.  Now different side effects had started to kick in – anxiety and depression.  I couldn’t leave those curtains, and Joe looked sicker than ever.  At 9 pm, he spiked a fever of 102.5.

With that fever came a sudden rash.  Because Joe spiked the fever and produced a rash 30 minutes after being given another dose of the rescue drug, we deduced that maybe it was an allergic reaction.  He was given Benadryl and hooked up to a pulse ox machine to make sure the allergy did not become anaphylactic.

Questioning My Faith

Day 5:  The methotrexate level was still way too high.  The doctor said his rash could not have been from the leucovorin.  According to the side effect information, there was less than a 1% chance of a rash.  So they give him the leucovorin again and 30 minutes later, his fever went up again.

The doctor still did not think it could be the rescue drug because they had never seen this reaction before, so they decided to play the elimination game.  At the same time, he had been taking an antibiotic for the past three days because of the lowgrade fever. Maybe it was the antibiotic?  The rash was getting worse and his eyes swollen shut.  We didn’t know if it was a side effect or an allergic reaction.

Unfortunately, there were no private rooms available for us to move in.

I will tell you honestly, that I was starting to worry that my son was not going to live.  He just laid there, not eating, and couldn’t pick his hand up.  I can remember Dr. Levine just sitting there staring at him, and I swore she was thinking the same thing.  Oh, how I prayed in there.  How could God have been doing that to him?

I think my mother thought he was going to die too because she made my father come up from Maryland.  His grandfather hadn’t yet seen him since his diagnosis, and my mom told him to get his ass up to New York.  I hadn’t wanted to see him.  I think I made that clear and he never came back again.  There was no energy left for that shit.  My poor innocent baby was laying there, and that man was running around healthy and free as a bird.   That makes you question God’s plan.  Yes, I still had a lot of anger.

Day 6:  Fever was slightly better, but the rash was significantly worse.  Joe was given Benadryl around the clock, and if there were no improvement, the doctor would increase the dose.  The lethargy continued, and the methotrexate had finally started to drop, but he was still considered critical.

Day 7:  Dermatology came and did a biopsy of the rash.  Joe was starting to wake up a little bit and even ate a little food.  Dr. Levine started to agree with me that it could have been an allergic reaction to the leucovorin.  I still did not get paid the doctor rate, but gee it was nice to get some acknowledgment.

She was also still not ruling out that it could have been a side effect to the large dose of methotrexate.  He had been off the antibiotic for two days and rash was worse, so it probably wasn’t that.  Joey was also getting another drug called 6mp.  He had been getting since the beginning and if he were suddenly allergic to that, we would have had a problem.

Day 8:  Dr. Levine was concerned about platelets and the methotrexate level had gone back up.  She questioned if the leaking port from days before was the cause of the rise of methotrexate.  We needed to get a more authentic reading and order different blood tests.  Prednisone was prescribed for the allergic reaction because the rash had gotten worse.  He was given these steroids orally and applied directly to his skin.

They lost the blood tests, and I knew nothing.   How I prayed for God to stop that craziness.  Later that morning, after eight days of being in those curtains, we got to move to the window.  It was just a little thing, but mentally, it made a world of difference.

Day 9:  Woke up to Joe looking so much better. The rash was getting better and his bloodwork from that morning came back with barely any trace of methotrexate. We still don’t know what the outbreak was from, but when anyone says does he have any allergies, I say yes – and name all of it.  Truthfully, they didn’t know whether it was an allergic reaction or a side effect.  As long as he stayed status quo for the night, Joe could go home the next day.  It felt like a miracle!

Day 10:  10/6/2010 We went home!  I can honestly say that those were the longest nine days of my life.

By the way … Joe never got the mouth sores that were supposed to be a side effect of the methotrexate.  I highly recommend the glutamine to anyone suffering.  I have told at least 3 or 4 other people about glutamine, and they had never heard of it!

The End of Inpatient

Just a few short days before, I thought I actually might lose him.  I am not sure if I ever admitted that to too many people.  Back then, I did not say it out loud.  I would never put that thought out into the atmosphere because I do believe in the power of negativity.  It crept into my head, and I willed it away until it crept back in again.  I kept that battle up and had clung to my rosary day and night. Three days turned into ten, dark, dreary days that I would like to block out.

We were told the rest of the therapies could be outpatient – no more hospital stays, depending, of course, on future side effects or possible allergic reactions.

Six weeks down and only about 100 more to go … Can you imagine? 

A reminder of how fragile life is … the above cards were given to Joey by two beautiful, strong women who have since passed away from cancer.

Click here for Part 7 – Spinals, another allergic reaction, and a huge discovery.

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Love Love Love!

Sandy

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