Abel’s Story

Site created on December 15, 2019

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Newest Update

Journal entry by Jaysha Portenier

It’s been hard to find the energy to sit down and post on here since being home, so I apologize it’s taken this long. 

As most of you know, Abe was discharged from the hospital on Christmas Eve. The doctor gave us the thumbs up to attend family events for 2 days as his immune system would still be working for a few days after his last chemotherapy treatment, so we were fortunate enough to spend Christmas at a few of our relatives homes and see some of our immediate family for the holiday. Christmas was amazing and we are so grateful to be surrounded by such incredible friends and family. 

The Friday after Christmas we took Abel to his first outpatient appointment to have labs drawn. We were told his ANC was 40. 

ANC stands for absolute neutrophil count. It’s the magic number we will learn to watch to determine if Abel is allowed to leave the house to go to public places. Neutrophils are white blood cells in the body that help fight off infection - a normal person’s neutrophil count can be anywhere from 5,000 - 10,000. With chemo, we want to see Abel’s ANC above 500. It is expected that these numbers will drop, its all apart of the process. They will usually only stay under 500 for less than a week and then start to go back up, but in this time we have to be super cautious with his temperature and anything he comes in contact with. 

Abe was feeling great at his appointment, so the team gave us the orders to keep him away from crowds, public places and new faces for the next week. Unfortunately Saturday morning at about 4:00 AM Abe ran a temperature of 101.8 and because his ANC was so low - that means a trip to the ER. 

We got to children’s mercy eaaarly Saturday morning where he had an ER bed held for him so he wouldn’t wait in the waiting room with a bunch of other runny noses, coughs and sick kiddos. With his ANC so low and his fever being 103 + in the ER, we had to be admitted for IV antibiotics. 

While in the hospital he ran a fever for another 24 hours, but it didn’t slow him down. We hated seeing him hooked up to all the IV tubing 24/7 (did you know children’s hospitals won’t even disconnect you from the IV to take a bath? While I’m thankful for the fewer opportunities for bacteria to get introduced to the line - talk about a pain in the ass!) 

Abel got his two days of antibiotics and as of Monday morning he had been free of a fever for at least 24 hours so we got the green light to go home. Funny fact- when changing his diaper Monday morning I noticed two teeth breaking through. He always runs a fever when he’s teething so I’d bet money that’s what this was all about. But unfortunately that’s the life we live now - any fever could become a medical emergency within hours so we have to play it safe every single time. 

So Abe is back at home and doing great! He’s finally starting to eat a little more like himself although he’s lost a few pounds since all this started. He’s running, playing and laughing like he did before all this which makes it all worth it. 

As always, your guys’ support has been unreal. Between donations, Christmas presents, helping clean our home and take care of our pets, the raffles, benefits and personal messages and well wishes... i wish I could thank everyone individually because you all truly help keep us going! Like - I’m talking hundreds if not thousands of people have touched our lives over this last month. Thank you, thank you, thank you! Keep praying for us! We go back for chemo next week and hopefully find out what trial Abel got approved for this Friday so I will do better about keeping you guys posted! 

I hope you all have a happy new year! 💕
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