Wednesday, January 12, 2011

Day 69

Some of you have inquired about how to get tested to see if you could be the match for Kelsey. You could specifically go through a private company to do this, but it is a bit pricey say around $150-200?, I'm not sure. You can always join the Be The Match registry online by going to join now. They will send you a swab kit. But, just so you know, it is not timely for you to be her match because it takes about 1 month for you to hit the list. However, you still could be a match for someone, so I would encourage you to do it.

Kelsey's fungal infection in the sinus tissue is pretty serious, especially so close to the brain. She is currently on 3 fungal drugs. She will be getting a granulocyte transfusion 2-3 times a week for 2-3 weeks. A granulocyte donor has to already be in an existing protocol that allows for this type of collection. Since I am in a protocol, they are checking to see if I can donate. It is risky in that the donor hasn't been tested just prior to donating. The donor will be tested, but results come after the host receives the cells. They are tested every month because it is a requirement and although the risk it reduced, it is a risk that we have been made aware of. Things could have happened or the donor could have been exposed to something within that 30 days, then she could get that. We always have a choice, but it is reasonable to think that this is needed if it has been so thought out that it has been presented to us. I know that this is one of those risk vs. benefit procedures. The benefits far out weigh the risk. Such great minds continue to think of everything they can to get her better. For me, everyday is on edge. Outwardly I am remaining calm, but internally I struggle with all that is looming ahead. I get impatient. I get tired of the fight at times, not that anything I do in the bigger realm of this will help, but all that I can do in the realm of that day I do. I get set over the edge emotionally at times when things don't go as well planned as they should especially that hurt her(like temp issues). I want her to be comfortable and secure. For the most part, everything is going pretty well. I weep at little things like a good poem or scripture or story that relates to our current situation. Not really because I'm sad, but mostly because I'm overwhelmed with love and how Great our God is and how great God is for using this story for His glory. When I received a bunch of this not-so-good news on Monday, I was saddened again. Then, I received 3 messages from Facebook that made my day. I know that my "longsuffering" as it was put is so worth it. I had never thought of it as that, but that is a great description. To those of you that share with me these messages, the timing has been perfection. I have to say that this is exactly the love of God through people that ministers to me and makes this longsuffering so worth it. It is this love that makes me weep. It is this love that keeps my focus on the day and gives me more hope. God is so big and continues to awe me.
I was feeding Kelsey some peaches a bit ago when she looked at me and told me that God is teaching me patience. Don't I already know this! This is far more of a challenge that sitting with Karly for 5 months. With her, it always was serious, but each month we had a schedule, then a time when it was suppose to end with a future plan with extremely confident doctors. With Kelsey, it is literally a daily change of events, with an ever-changing plan, with no end to this, with doctors who are confidently working on it with great hopes after sitting on death's door with a God who gave us a miracle to be where we are right now. Praising God all the time for just being here. Praising God for the miracles we've seen. Praising God for all of you. Thanking God for every day. Kelsey is amazingly strong that she keeps fighting every day. She can still smile the cutest smile. She is Kelsey! As she would say, "God is good all the time."
Love,
Mom

2 comments:

  1. Our awesome God is sustaining you in such wonderful ways,,,

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  2. Not everyone is equipped to handle a journey like you and Kelsey have been on the last few years. Not everyone understands grace in the midst of calamity. Not everyone praises God for miracles seen and unseen. Not everyone could keep fighting and supporting day after day. God knew what your family would do with this situation. You are trusted and honored by Him. He understands your heartache, your frustrations, but most significantly He knows you and Kelsey so well and loves you more than we can understand. God is with you. We will continue to pray and intercede. He understands. He still answers prayers. He knows. Peace to both of you. You are loved.

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