“It Was a Normal Day, and then It Wasn’t”

Again, before I jump in, I need to credit the title. These words were spoken by Reverend Koreen Guillermo, in one of the very first sermons she preached here in El Paso, and she spoke them in very much the same context in which I use them today.

We are days away from the first “crapiversary” of Ryan’s relapse.  This is technically the 8th crapiversary we have plodded through, although the 7th blew past us because I was otherwise occupied.  On the 7th crapiversary, September 16, 2015, we had been inpatient for two of what would end up being a total of over 40 days.  We admitted on September 14, and as of the moment we were admitted, we were technically homeless.  We had lost our house, and I had no income and no money saved to rent a new place.  Ryan’s address for school purposes was the hospital.  I was receiving some of my mail there.  On my nights off, I stayed with my older son at my ex-husband’s house while he stayed with Ryan.  We were busy preparing for the most intense phase of Ryan’s front line chemotherapy, so I had little time to dwell on the 7th crapiversary of the initial diagnosis. (Obviously we aren’t homeless anymore).

On Sunday, June 14, 2015, I took Ryan to the urgent care clinic because he was complaining of stomach pain.  Before we left, I called Children’s to check in with the resident, as Ryan had his 2 month oncology follow-up scheduled for the end of June.  He told me to go on to urgent care, but to call the pedi-onc clinic in the morning so they could see him early Monday morning.  Urgent care said Ryan’s stomach was distended, that he was likely constipated, and to take him home, give him some Miralax.  I did so, then called the pedi-onc clinic as directed on Monday morning.  The oncologist asked me to bring Ryan in through ER, because he wanted an abdominal ultrasound.  We did that, and they drew labs. They agreed with the constipation, said the labs were fine, and sent us home with directions to keep the appointment we already had scheduled for the end of June.  I was unhappy with this turn of events, so I called our pediatrician, who said he wanted Ryan in his office Tuesday at 1:00.  At 12:15 on Tuesday, June 16, the phone rang and our oncologist said “I need you to pack for an admission.  Ryan’s platelets are 90,000.  Pack and come straight up.”

Later that afternoon he told me that when the blood was examined, some of the white cells looked funny, so the draw had been flagged for further study, and that the cytogenics showed that the Leukemia had returned.  The risk indicators were all favorable, and this was a return of the same type of Leukemia.  As everything had already been done and studied, we were set up to have a new port placed and begin re-induction on Wednesday, June 17.

Those are the hard, medical, irrefutable facts that came with the relapse.  Here is the rest.  I had known since April that we were in big trouble.  We had skin testing done at the allergist, and at the end Ryan’s face broke out in petechiae.  He was crying, they said.  It happens, they said.  Ryan has had many, many tantrums in his life, and none of them have ended with his face covered in purple spots.  The pedi sent us for labs, just to be safe.  They were normal.  We had them done at Children’s, so the oncologist reviewed them.  Nothing of note.  But I knew.  In my heart, I knew.  Everyone told me I was being dramatic.  Looking for attention.  Borrowing trouble.  Blame anxiety.  Blame PTSD. Lara is just creating a problem where there isn’t one.  Get a grip, everyone said.   Don’t worry, they said. It will be fine.  And then we got the news.  What I said in the days to come, to EVERYONE,  probably does not bear repeating.

Next asinine statement:  “At least you know what to expect this time around”.  Yeah.  I know what to expect, alright.  Hair loss.  Seizures. Trouble walking.  Isolation.  Nausea.  Infections.  Constipation.  A child who simply does not understand what is happening or why, who cannot verbalize what he is feeling, where he hurts, and when enough is enough and he just wants to be left the fuck alone.  Knowing what to expect did not help, in fact, it made it much worse for me.

But we slid on into induction, and after 6 or 7 days, we discharged.  Ryan came home very nauseous, wouldn’t eat or drink, and woke up one night and threw up in bed, and was unable to walk to get up and come get me.  Once Ryan goes to bed, I don’t generally check on him, I can hear if he gets up.  But I didn’t hear him that night.  Still, the mommy gut kicked in, and for the first time in months, I looked in on him before I went to sleep. There he sat, in a pool of vomit. Shawn was with me, and we cleaned Ryan up, gave him some Zofran, and put him back to bed.  (He will never sleep alone again.  I’m not sure how I plan to handle that when he is 25, but we will cross that bridge when we come to it). The next morning, we admitted.  He was taken up in a wheelchair, as he could not walk.  I had no idea what train wreck was in our immediate future.  Induction had called for a chemotherapy agent Ryan did not have the first time around, and it knocked his immune system out completely and immediately.  Ryan had had diarrhea for about 12 days by that point, and our regular oncologist was not attending the week we admitted.  When he came on duty, several days later, he immediately called in GI doctors, a nephrologist, and the infectious disease doctor.  Ryan was diagnosed with Neutropenic Colitis, a bacterial infection in his gut.  He was eating nothing, we could not get the diarrhea under control, and he was in awful pain.  He ended up on TPN (nutrition via IV) for 10 days, due to a need for complete gut rest, fighting for his life.  I can promise you this:  when you do not know if your child is going to live or die, 3:00 in the morning is not a fun time at all. I sat with my baby at night, begging him to fight harder, begging him to hang on, begging him not to leave me.  Begging him to stay the hell with me.  Helpless.  Terrified.  And then he turned the corner. The attending, Dr. Lacaze, came in that day  with the BIGGEST smile on her face and said “Hey, Ryan!  This is THE BEST DAY EVER!!” I will never forget that smile.  Not until the day I die.  And I remember thinking “Not today, cancer.  You don’t get my baby TODAY!!!”

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This is what our hospital room looked like.  This day he had fluids, TPN, and Lipids hanging on the right, plus an extra pump for medications that needed to be pushed.  Platelets were hanging on the left.  He was hooked up to the monitors 24/7.

No.  I did NOT, thankfully, know to expect THIS.

As the Neutropenic Colitis resolved, and his ANC started to rebound, I noticed that his port site looked odd.  When he had his needle change, we realized that the incision had not healed correctly, or at all, since his counts had crashed so rapidly.  It was infected, and the port would have to come out.

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So just about the time we thought we might be going home, this baby, who had just fought back from what could have been a fatal infection and was still unbelievably fragile, was going to have to undergo, immediately, surgery to remove the port and insert a PICC line.  And then, he had to have an IV placed in his OTHER arm, because some of the meds he needed could not be run through the same line.  10 days later, the PICC line was removed, and Ryan underwent his 3rd surgery in just over a month to have a new port placed.

Since then, things have mostly gone well.  A few bumps along the way, but Ryan has overcome them.

So yes.  We will deal with the crapiversary.  It absolutely sucks.  But it’s also cause for celebration.  We are winning.  Ryan is winning.  Me and Ryan, we are rocking this.  Not every day is a party, but you can bet the bank that we get up every day and we FIGHT THIS MONSTER TOGETHER.  We draw strength from each other.

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