Bailey Update

Bailey has been quite the trooper in recent weeks. Her life has been turned upside down and nothing looks like it did. She breaks down and has hard days, but she somehow always manages to pull it together and march forward. She has had three rounds of chemo. The first couple were completely dreadful. It takes a while to figure out the nausea medications and it was awful. She was so sick and miserable and there was nothing that seemed to help her. We felt helpless and it was horrible to watch. The Methotrexate has seemed easier for her to deal with. This weekend is the Doxorubicin and Cisplatin which were so difficult the first week. The Cisplat is brutal, so we are hoping that we can come up with the right meds this time around. She is battling terrible mouth sores from the Methotrexate and that has been her biggest complaint lately, as she is in significant pain and eating has become difficult. By last weekend, we seemed to have figured out what works for at least one batch of the chemo drugs...and she actually had a decent weekend in the hospital...was eating well, sleeping well and the sickness was kept to a minimum. But the schedule has been grueling and she is coming up on her third weekend in a row spent at the hospital.
While we would rather not know any of these people, the group at the AFLAC Cancer Center at Scottish Rite has been amazing. We love Dr. George and Alisha, Karen in Child Life and our favorite nurses Sara and Andi...the team there is awesome and very good at what they do. If you have to spend a lot of time at the hospital, they are the people you want to hang with...a totally fabulous bunch.
We are busy now, prayerfully considering surgical decisions. Bailey will be having surgery in early June, and as I've mentioned in previous posts...the tumor must come out. We have done hours of our own research. We have met with surgeons. We have met with a physical therapist. We have either spoken with or met families who have been through this and chosen varying options for their children. We have even talked to the kids who have been through it and Bailey has met a few of them. None of the choices are easy or actually even desirable. There also isn't a way to say that one option or the other is better for all children. It depends on the child's age, amount of growth potential left (height), personality and desired activity level post-surgery...as well as a number of other factors...none of which are easily quantifiable. We are definitely leaning in one direction at this point (all three of us), but this is certainly not the type of decision we ever dreamed of making for our child. Bailey is also actively involved in this choice...as she is the one who will have to live with it. 
Overall, I would say that Bailey - all of us - are doing as well as can be expected. We have seen God's hand in this. We are attempting to live in the day. To cherish small blessings. We are trying to research and do our due diligence, without becoming so obsessed that we are sucked into the black hole of despair that comes from too much time spent on the Internet. We have good days and bad days. Actually, good hours and bad hours. This is not an easy way to live...to keep up with life. Some days we are drowning. Other days we can see glimpses of normal. On all days, we are exhausted. He loves us. He is in control. Some days I hear Him whisper. Some days I am angry. Other days, I cannot hear Him and I simply chose to trust because I know He loves us. It is beyond difficult...a struggle like we have never known...to fight cancer. Faith-testing. All-consuming.
Please continue to pray specifically and fervently. We do feel covered and we have flashes of peace about things that we know can only come from God holding us. We are grateful to have such a body of believers, walking with us...carrying us even, doing what we cannot do for ourselves. The journey will be long...we will need each of you...praying, loving, serving. We are so thankful to have so many amazing people in our lives. This is not a road we would have chosen, but this is the path that He has for us. We are not sure why - we may never be. When we cling to Him, it seems alright. When we lose sight, it is terrifying. Thank you for walking with us.

(If you are friends or family and would like Bailey's website info, please just send me an e-mail and I will get that to you.)

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