This has been a long Monday! After our jam packed weekend of softball, swimming and staying up too late we had a crew of tired, cranky people to cart back to Memphis today. It seems someone (me) thought it would be a good idea to bring a sibling with us to help entertain Kayleigh so she wouldn’t be lonely… All you parents of multiple children are now shaking your head – and rightly so. I’ve been wondering what I was thinking since we pulled out of the driveway this morning. Cole & Kayleigh have been fussing, picking and whining ALL. DAY. LONG!!! Ahhhhhhhhhh!!
And then that small voice in my head says – yes, but she’s here and able to pick, poke and pester, she is here acting like a normal 7 year old girl with her brother – and that stop me in my tracks. It doesn’t mean their annoying, whiney banter doesn’t bother me, but it does make me thankful for it. Every minute of every day. That doesn’t just mean being thankful for just the good minutes, it means every minute. I am probably going to have to remind myself of this regularly this week as they fuss and it drives me nuts; but, tonight, as they both lay sleeping on either side of me because they both wanted Mommy, my heart is full and I know even the bickering is worth it.
So, on to treatment things… Today was radiation treatment 16 of 30. It was also hopefully our last day of steroids! Tomorrow will be the first day since 5/16 that she has not had steroids. We have been weaning her down slowly and up until today there had been no worsening of symptoms but this morning she woke up with a mild headache that went away fairly quick. Then tonight before bed she had another headache. None of them were severe and nausea did not accompany them so that is good. I have also noticed her right eye drooping a little more. It is possible it is just her body beginning to adjust to no steroids, we will just have to pray, wait, and see. We need all of you prayer warriors on the war path for healing and feeling better!
Kayleigh also had an OT appointment, Radiation Oncology consult, vitals and child life visit today. At our radiation oncologist appointment the Fellow that checked Kayleigh out first was talking about the steroids and he mentioned to Kayleigh how once she got off the steroids she would “be able to get rid of those puffy cheeks.” Ugh. Up to that moment she had been oblivious to her weight gain and her puffy, steroid face. From that point on today Kayleigh was uncharacteristically quite. It literally ate at her all afternoon long. At dinner she finally looked at me with tears in her eyes and said “Mommy, I don’t like having to fight this”. And before bed she was looking at herself in the mirror asking if she had a big belly and did I still love her. She has been so strong through all of this. Much of that comes from all of the positive support. But one careless comment, a comment that was meant to be helpful, broke her sweet spirit.
So tonight I have many prayers requests…
1.) Complete healing this side of heaven!
2.) Kayleigh to be able to come off the steroids completely and no more headaches or other bad side effects.
3.) Rest tonight to help restore her bright, beautiful, fun loving personality.
4.) Cole and Kayleigh to enjoy each other and for Tim and I to enjoy them.
5.) The treatment path for phase 2. We do not have an answer on this yet but we are seeing God do some mind blowing things to help us figure out Kayleigh’s plan. Keep on praying for clear direction, God is certainly answering your prayers!
Verses for tonight
1 Thessalonians 5:16-18
16 Always be joyful.
17 Never stop praying.
18 Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
Isaiah 41:10
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
Until tomorrow,
‘Carrow 💜
3 peas in a pod
Out to dinner with her new AG doll Grace
Don’t you wish you could do therapy on a scooter?