A miserable day

Wednesday was supposed to be an easy day for us. Peyton's port was already accessed, she was going to go in, get her medication and blood transfusion via IV and we could show her big brother and sister the clinic and let them see what it was like for her to have her treatment. Unfortunately, they got to see a really horrible view into what her day can be like

We don’t know why exatly, but when I got the kids to the clinic, Peyton's needle had come out of the port. It was still in her skin, but the needle was imbedded in her chest, free-floating in there and causing her a lot of pain. The nurses had to take the needle out and reacceess her. Normally when we access her port she has on EMLA cream which numbs the area really well so that it doesn't hurt much. They used a freeze spray yesterday because the EMLA cream takes 35-60 minutes to become effective, but the freeze spray didn't work very well. It caused her a LOT of pain and she just had a nuclear meltdown.

It was overwhelming and frightening to watch her struggle to deal with her pain, frustration and anger. She threw herself on the floor, she punched herself in the mouth and split her lip, she bit things, she bit me, she was scratching the walls and chewing on chairs, she screamed and cried and growled and said the most hateful things she could think of (which is pretty limited, but still pretty hateful), she was just out of control. By the end of her hour long fit, she was covered in her own blood, she was bruised from throwing herself around and she'd managed to pull her port out again and had to reaccessed AGAIN!

At one point of the episode, I just sat and cried next to her. She wouldn't let me touch her or console her, she would swing at me, try to bite me and kick me. "I don't want you, I don't love you, you're not my mommy," I know she didn't mean them, I know she probably didn't know what she was saying, but it broke my heart. It hurt me so bad because I just wanted to wrap her in love and take her somewhere it wouldn't hurt her anymore. It was just painful to watch her go through this because there was nothing to make her feel better, nothing to make it go away, I hate that she has to deal with this life right now. It made me so angry that people who are horrible and rotten and probably deserve for terrible and painful things to happen to them live long easy lives and my poor baby has to suffer through this. It's just agonizing as a parent to watch helplessly. I had to pray a long time yesterday on the drive home to work through my frustration and anger, to pray for strength for the next day, for the next treatment, for whatever happens next.

When Peyton was crying and screaming through her first access, she wanted Rachael and I had the nurses bring her in. I was worried that it would freak her out, that it would scare her to see her baby sister go through this, but I also wanted her to understand that it isn't about Peyton coming home with presents and prizes from the clinic. This has been hard for her to grasp and there's been a lot of jealousy and hurt feelings because I know she doesn't understand. When she came in, Peyton was hysterical and Rachael went right up to the table and took her hand and told her "Rachael's here, I'm here with you. I love you, Peyton, I'm here." She kissed Peyton's hands and forehead and just talked to her through the whole procedure. When things got worse and Peyton started to get out of hand, Kyleen came and got her and kept both Nathaniel and Rachael distracted in the play room until Peter could come pick them up. It was awful to me to have to let Rachael see this horrible experience, to expose her to this. However, I was amazed at her compassionate heart, she wasn't scared, she didn't pull away, she went right to her sister to comfort her and protect her and to give her love. It was the high point of the day to see my daughters reaching out to each other, at this age, to find strength and love. It was good for Rachael to have her eyes opened to the reality of what Peyton goes through to help her understand why we have to do so much for her, and why things have to change for a while. I hope it helps and that she is able to understand what's happening.

Peyton did finally calm down, Peter took the kids home to calm them down and spend some time with them explaining what happened and helping them understand. Peyton got her transfusion and took a HUGE nap, she was exhausted after her episode. She woke up happy and chipper. When we got home, Grandma Sharon was here to feed the family, she took the two older kids to the Y for Nathaniel's tae kwon do class, Peter played with Peyton and Mom passed out at 7PM. I was so worn out physically and emotionally that I just went to sleep and trusted everyone around me to deal with whatever needed to be handled. I'm so glad we're a fanily and we have each other to rely on, because when I don't have the stregth to deal with one more thing, someone makes sure to pick me up and help me through.

We had an easy day at the clinic today. Peyton suffered some risidual emotional issues from yesterday, fear of pain and a little leery of nurses that she loves. But we got through it, it was simple and we got out fast. Tomorow we have to go back for a platelet transfusion and please pray that goes well. I'm going to miss a school function of Nathaniel's and I'm hoping that he's able to understand that. He's going to have hurt feelings, I'm afraid, but pray that I have the right words to make it ok.

We get so little notice on the blood and platelets, if people want to donate, please just do so. Red blood is good for a month and platelets are good for a little over a week, so if we can use it then it will be available, if not, someone else will be able to. Thank you so much!

—Anissa

Psalms 31:24 Be strong and take heart, all you who hope in the Lord.