Mouth Sores-Interim Maintenance II-Day 28

Early Morning of Dec 8th: It's 3:00 a.m. and Avery finally went back to sleep, after getting enough courage to swallow her medicine. It causes her so much pain to swallow. I can't go back to sleep. She can't eat, is hardly drinking and has had her head in the tiolet or trash can more then once tonight (or should I say last night). This chemo methadraxate again has caused her to have severe mouth sores in both of her cheeks, on her bottom lip and down her throat. It hurts her to even talk and her voice is so raspy. It is causing her so much pain that I can't help but wish, I could take this pain from her.  I hate that there is... Absolutely. Nothing. I can do to make it go away, but comfort her and tell her I'm sorry as I watched her have to suffer through this. I think of others that have a child with a long term illness, longer then 21/2 years, some a life time of taking care of them or of those I know that have had a child they have lost. I have seen a glimpse of their pain and want to help them even more.

Watching her in pain, I think in some small degree this is what it felt like for our Heavenly Father to watch his son suffer on the cross. It had to be intolerable, yet he endured it. Tonight also reminds me of another night I pleaded with Heavenly Father to please make her pain go away. That I couldn't take it anymore, I couldn't take watching her in so much pain. I had a strong impression that he too has a hard time watching her in pain. And again that night I thought of him having to watch his only begotten son suffer too and Can I even imagine how hard that must have been?

Avery I hope you know what an inspiration you are to me. I have never heard you feel sorry for yourself. Never say why do I have this or why do I have to always be sick, but know of your disappointment at not being able to go to your Christmas performance tonight. Although it was painful, I'm so glad you got to go this morning and we were there to watch.

I think back at a few stories you told me in the middle of the night when you couldn't sleep. I was so impressed by your responses I got up at Rachelle's house and wrote them down so I wouldn't forget.

The first....You went to your cousin's family get-together for a birthday celebration. Kids there didn't know you and out of curiosity ask why you didn't have any hair? You told them you had cancer. They said, "I feel bad for you" Without hesitation you said, well...what color of hair do you think I had? Their response. Orange? Red? Brown? I finally told them black. Then I told them the story of what happened. I slept at my aunt's house and my legs hurt really bad. Then awhile later I slept there again and my legs hurt. Then Justin said (her Uncle) you should go to Primaries and they figured out I had cancer. Although not exactly correct. I liked that she gave Justin credit. Maybe him helping/giving her a few priesthood blessings which eventually led us to primaries left an everlasting impression in her mind. I was so proud of how she handled this situation.

The second.....Avery said, "At school a 1st grader said, Are you a boy"?  This broke my heart as I've been there before and seen your face drop as someone has said something similar before. I asked her what did you say?  I said, "No I'm a girl I just have cancer and take medicine that makes my hair fall out." Then you said that Saydee started getting so mad and said she is not a boy. Good ole Saydee will stick up for you anytime. I'm not going to lie, this one crushed me,  but I was so proud of you. I found myself even a little mad that this kid would say that, but I know kids aren't afraid to say what's on their mind and mostly aren't trying to be mean just curious. I told you kids are curious and don't see many kids without hair, but I was so proud of how you handled it.

Avery I am so proud at how strong and courageous you are. You have to do more scary thing then most kids do and you handled the situations perfectly.

I have to also say....your dad once said it sounded like I do it all which I would never say is true. He doesn't like to be in pictures, he doesn't like to update the blog and doesn't like to leave comments, so it's my thoughts and stories that get written, but know for sure he has been there, By Your Side, Every Step Of The Way and a lot of times when I can not . Every picture you'll ever see or every experience we've had through this journey he too has been there and has had a lot of emotions that only he can describe.

Before this 3rd treatment of this phase (Interim Maintenance II) you had a great week, maybe even two. This is a comment your dad left on the blog so I'll post it here. Johnny's words...So I just got off work and lying here by Avery and thinking what she told me the night we got home from salt lake she says dad I don't even feel like I have cancer any more I just feel normal. Pretty amazing for someone to say just hours after having poison shot through her veins or chemo. Avery you are a very strong little girl keep up the fight and I'll try and keep up with you love dad.

It's now 5:02 a.m. good night or should I say good morning? We are suppose to meet Jed at the airport at 7:30 from being in Iraq since June.  I'm afraid...she may be disapointed again. She (we) are so excited to see him and for him to meet Carson.

Oh crap....her temperature is 100.5 right now PLEASE no ER visit.