My heart is heavy tonight as three AT/RT families we know of are taking their child home for hospice care or have lost their children in the past few days. What do I do with that kind of news? I just don’t know…
Tonight after dinner, the boys asked me to tell them a story. Of course these stories have to include light sabers, a villain of some sort and 3 boys on a mission. So, tonight I told a story about a monster that needed hunting down and three light-saber wielding boys who flew on a super-sonic skateboard until their swords detected evil with a loud ringing sound. The loud ringing sound started once they neared the hospital where Phoebe is and the boys tracked down the monster on the Oncology floor. The monster was named Cancer and the boys burst into each room defeating the monster with their light sabers and the Holy Spirit descended upon the child and healed him/her instantly, their hair grew back and they got up and put shoes on ready to leave the hospital. When I got to the part about Deacon defeating the monster in Phoebe’s room, Ben laid his head on the table and started weeping. My precious 9 year old boy is so broken hearted over Phoebe’s situation. I just held him and cried with him. I talked about it being good to cry with all of the boys and how important it is to say how we feel, how much we miss her, that it hurts to go through this etc. I’m glad it happened, but oh how my heart grieved for my boy.
Ben asks about her daily, wants to visit her often, but has been sick. I think I will take him first for our Mom and son day with Phoebe. Averic asks a lot of questions. Deacon says he misses her but doesn’t really quite understand.
After dinner we Skyped with Nathan and Phoebe at the hospital and I could tell Ben just wanted to reach out and grab her. He kept remarking about how cute she was. This was his first time to see her without hair. The other 2 boys tired of Skype and went off to play Legos, but Ben stayed glued to the screen talking to her, watching her color, giggling about her Phoebe-ness and her sweet little chuckle.
Phoebe has had a pretty good day herself, I think it’s just been a rough day emotionally for the rest of us. This routine is wearisome and not being able to bring Phoebe home has been a let down. We just miss her in our family, in our home, at our table, running around with the boys.
It’s hard to believe round 2 of in-patient chemo starts Friday. It seems so crazy to load her up with chemicals right now when she is still trying to fight her way back from the last round. Please pray for her little body to rally and be in a better place by Friday.
We have been receiving the sweetest care packages full of Valentine’s Day goodies for Phoebe, little knitted hats and headbands with bows and blankets and all kinds of fun things, so thank you if you’ve been a part of that. Phoebe is one very loved little girl and we have such fun giving her all of these things.
Our prayer requests tonight are the same: sodium level, tummy pain and bloating, open sores and fever. Thank you all for staying with us through this storm.