Chemo Update

Written by Mommy

It has been awhile since we have updated on what she is doing treatment wise. She began her new round of chemo last week. She received her Vinchristine through her port and is continuing to take the 6MP pill at home. She was placed on steroids, only for 5 days thankfully, and is now taking Methotrexate at home in the form of a pill. The spinal tap will only be once this month instead of once a week. YAY! As Stacey mentioned she does have kidney stones and we are watching them to determine how they should be handled. They do cause her pain when they move and I don’t believe she has passed one yet. They have her on some meds to try and ease with the passing of the stones, no pain meds but something to try and make it easier.

To be completely honest with you, giving her chemo on a daily basis is starting to get to me. I keep thinking and telling myself, “This is to make her better. Yes they make her feel like crap but it is for the best in the long run.” But still I used to think of chemo as this thing Doctors did; not something I would ever be giving to someone, especially my own daughter. It kind of messes with your head and serves as a daily reminder that yes, she is sick and in the fight of her life, literally.

Everyone asks “how is she?” and I usually respond with “She is doing fine.” And well, I am not so sure that is the case. She is sleepier than a normal 3 year old. She has her moments of panic when I don’t know what is wrong with her and she has her normal playful moments as well. All along I’ve thought “she is breezing right through this we are so lucky!” but now with the kidney stones being caused by the chemo I am having second thoughts on that. Maybe her little body isn’t breezing through this and either it is her age and/or my own inability to handle this that I am not realizing how she really is. She is sick! And I know that, but living the day to day with a child who has Cancer is the hardest thing I hope I ever have to do. I find myself retreating to a place in my head where there is no cancer and she is just fine and this is just like a bad flu or something. And then she throws up or her hair lands in my hand and the harsh reality slaps me in the face. The reality of even though none of us are promised tomorrow my daughter really only has an 85-90% chance of making it out of this successfully, baring nothing out of the ordinary goes wrong. Now, I know those are great odds, the best you can get even, but up until this point the odds have not been in our favor even when we’ve been told that they were. SO I go through the motions of pill after pill, holding her, talking to Cooper and trying not to lose my mind and my marriage with all this. I pray the entire way down the hall when I wake up in the middle of the night or early in the morning and she actually hasn’t woken me up yet. I pray that she is still alive. I pray that she is just having a good night’s sleep; one that is not filled with night terrors of being poked or scanned or being fretful from not feeling well; one where she dreams of happy things like the zoo and the beach.

The past 2 months have been the longest ones of my life yet it seems like a lifetime ago that she was diagnosed. Our previous life really is gone forever and that is okay but we still haven’t really figured out this new one. I mean I know the counts rules and the fever rule and I have the medication schedule worked out but how to actually DO this I have yet to figure out. How to DO this life and it be a life that doesn’t drive me down into a deep pit or tear my family apart I have yet to figure out. I think we, Brent and I, both feel like we are drowning and keep fighting to come up for air to only have the air be full of bad stuff and so back down we go. Even the “our time” which is very little is still filled with Cancer talk and/or how many times Cooper fell down this week. (His faced is bruised now from falling onto his face off of the stairs in the garage. OUCH!) But it is all I can think about. It is all I do. I can’t even clean out a closet, do the laundry or make a dinner without the thoughts of how my children are doing with Cancer staying in my head. How is ViviAnne REALLY doing and how is Cooper coping with his Mommy being taken away from him with no warning for 4 days at a time? Will I ever get to be the Mom I always wanted to be? After last week, it doesn’t appear as though I will any time soon.

So in this deep pit where I am currently residing I happened upon a scripture in a book a dear friend gave to me for my birthday this year. I don’t read this book nightly just pick it up from time to time when I think about it. Well, tonight ViviAnne is so tired from Chemo that bedtime was early and fast so I picked it up. And here was the very first thing I read at a random page I turned to. 

“Moments of darkness in our lives may be caused by the death of a loved one, the loss of a job or a home, or another great tragedy of life. Yet there is a greater darkness than these tragedies: the darkness in the eyes of one who has not felt God’s love, grace, and the assurance of his hope. There is hope for all of us. There is light. Jesus Christ, the Son of God, is our hope and light in the darkness.”

—Margaret Fishback Powers. 

“For you were once darkness, but now you are light in the Lord. Live as children of light.”—Ephesians 5:8 

HUH, I guess my Nana is right, God really is everywhere and has His hand in each and everything we do, all we have to do is be receptive to it. This is just what I needed coming off of 2 really bad weeks. Thanks, God.