Today was another rough day for our little warrior, Persy. After some triumphs yesterday, he had a difficult night of restlessness and agitation that unfortunately continued throughout the day. Our sweet lil love just can’t get comfortable making it impossible for him to settle down and get the rest that he so desperately needs. Poor P spent much of last night and most of today tossing and turning, rolling this way and that, standing up and flopping down. Unfortunately all this movement and agitation often causes his lines to get tangled and his sensors and IVs to get tugged, causing him even more pain. Because Persy was so agitated, someone had to essentially stand over him and attend to him constantly to keep him safe. This causes Brittany and Ryan so much stress and anxiety seeing their baby so inconsolable and upset. They are exhausted emotionally and physically but not too tired to keep fighting and advocating for their boy. I am so proud and amazed by their strength every day.

Persy was finally able to settle down this afternoon during a visit with the music therapist who stayed at his bedside for over an hour. She played the sweetest lil tunes that calmed our precious boy and allowed not only him to relax but Ryan and Brittany too. The only other thing that calmed Persy besides this was some videos on Britt’s phone of his bubba, Kep and his best good bud, Myles.

Persy had to be sedated again today for his MIBG scan, a special nuclear medicine scan used to detect the presence of neuroblastoma not revealed by the MRI or CT. Brittany was able to hold her boy and be with him as they lulled Persy to sleep. We are praying that Persy is “avid” and responds to the test as this would make him eligible for participation in a special MIBG treatment. More on this later…

Lastly, while he was sedated, Persy had a nasogastric tube (NGT) placed, a small tube that is inserted through his nose and travels to his tummy. Persy is able to get his medicine and nutrition through this tube when he is not up to taking food/drink by mouth, which may become even more of an issue as he continues his chemo treatments.

Little victories

  • Persy made it through his second chemo treatment and is on his way to a full recovery!!
  • Persy’s swelling went down today and the nurses reported that he put out more fluid than he took in!
  • Persy’s NGT will give him more freedom to eat or not eat depending on how he’s feeling.
  • Persy allowed Brittany to hold and cuddle him as he was sedated for his scan.
  • Persy pooped a little more today.
  • Even though Persy is agitated, he is showing us he is a fighter and still has his spunk!

Please pray

  • For his agitation to decrease and for Persy to be more comfortable.
  • For Persy’s swelling to continue to go down. This is especially crucial given that he’s now getting chemo.
  • For his body to respond to the chemo and specifically that the chemo obliterates all the metastatic cancer sites in his body.
  • For his cancer to be attacked by the chemo, but for his precious body to be protected from the damage caused by the toxic chemicals.

God our Refuge, we intercede for our sweet Persy and his family who are going through this treatment for cancer. Lord, may You cover them with a blanket of peace. May Persy, Britt and Ryan rest in confidence that You are sovereign over this situation. Even though their life has been turned upside down and unsettling things are happening, remind them that You hold Persy in your loving arms. Let them know You love him and are caring for him throughout this journey. Amen.