Peyton and I are up early early in the morning. I'm trying to fill her little belly because after this it's jello and fluids only until noon and we haven't done that in weeks! She's having her day 29 bone marrow aspirate and spinal tap today that will hopefully tell us that she's sucessfully been put into remission and we can proceed into the next phase of treatment. This requires her to go under general anesthetic, so pray for her easy recovery from her mild surgery.
Today is also the last day of her steroids, so we're PRAYING that by early next week we'll have our Peyton back. It will be good to have our sweet little girl back, it has been so hard for the whole family to deal with her violent moods and emotional upheavals. With any luck, she'll be able to go back to normal without any residual personality changes from the past few weeks. I know she'll suddenly feel better, so that will be a huge relief.
Please keep Nathaniel and Rachael in your thoughts as they struggle to deal with the changes in our lives. Nathaniel is having a hard time dealing with Rachael…part of which is just a brother and sister thing, but I feel that part of it is also his frustration at the situation and the anxiety and confusion coming out and he takes it out on her. He wants so badly to comfort Peyton and she just does not want him, or anyone, near her at this point and it hurts his feelings and he's not understanding why she's changed so much. I keep reminding him that it's just the medicatition and that it's going to go away soon.
Meanwhile, Rachael is leaning on him for attention and he doesn't want to give it to her. They're fighting a lot and it's frustrating for me, but I'm trying not to lose it with the minimal patience I have left. Rachael is having a terrible time attempting to understand why Peyton gets to do all these things that she never got to do before and gets away with so much more and has such a cushy little life now, as far as a 5 year old is concerned. Peyton gets to lay in bed and watch whatever tv she wants, whenever she wants, she doesn't get a swat for having a nasty attitude and saying mean things, she gets to eat whatever she wants, whenever she asks for it!
I tried to explain to Rachael what was happening with Peyton again, and put it in perspective that now Rachael gets to do a LOT of things that Peyton can't enjoy anyomre. She gets to go to school, she gets to spend time with her best friends and play and be outside and have fun and feel good all the time. I tried to make her understand that Peyton can't do these things anymore, and she doesn't feel good anymore and that watching tv in bed and eating are the only things she really feels good about right now, it's all she feels like doing. Shes seemed to get it at the time, but I know it's going to be a long road of understanding. She and I prayed for her to be patient with her sister, to have a better attitude and to thank God for having a family like ours. She felt better after some alone time with Daddy at bedtime as well.
Peter and I are going to shoot for an available evening some time to go and spend some time together, we'll see how that works out. Maybe with Peyton's steroids easing up on her moods, she'll be more agreeable to staying with others so we can have a moment together. Peter works a lot of hours and I know he's feeling the strain of working and then trying to come home and pick me up off the floor. Often times, after a day of dealing with the Human Whirlwind, I am just exhausted emotionally and physically and have given what little I have left to Nathaniel and Rachael. He expressed tonight how important it is for us to have time together, and he is so right, so I'm going to try to arrange for us to at least get a dinner together.
On a happy note, since school has started, I've been able to meet with friends for a meal, catch up and have some quality time. My dear dear friend Amanda came over from Daytona and brought love and sunshine and her sweet baby boy with her. They spent a couple of afternoons with us and really were able to cheer Peyton up. She responded to Amanda in a way she hasn't responded to anyone since she got sick, able to laugh and talk to her…..it was fantastic to see! Amanda brough her guitar and sang to her and brought candy and sweets, maybe it was her Willy Wonka approach that spoke to my baby's heart! hahahahaha Thank you, Amanda, for continuing to be a wonderful friend and source of love in my life and that of my family.
My amazing mother in law has come over every night this week and brought dinner, helped with the kids, helped me try to get my house under control….she's awesome and I am so thankful every day for her support and loving spirit. She was a support last year through my stroke and I don't know what we would have done without her. This year she's jumped in whenever and wherever we've needed her and we are so blessed to have such an amazing woman in our lives.
We have continued to have a wondeful response from friends and family, offering love and encouragement. Thank you!!!! Let me just tell you, it doesn't get old, every day it helps us get through the next day and it warms our hearts to know about the prayers being said for our family. For those that have chosen to donate to Peyton's fund…thank you thank you thank you, if you haven't gotten a thank you card, you will! Just give old "non-Martha Stewart" here a chance to get caught up. We are humbled by your generosity and thank you for your giving spirit.
I must go get some sleep now, I have a long day ahead. I will post later updating how her treatment went, and when we have results, I will definitely let you all know those.
—-Anissa
