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| ready for the donut machine |
As usual, Friday started very early. We were in St. Louis by 8:00 so Davis's port could be accessed and a type and screen could be done for his transfusion.
We then headed over to the Siteman Center for his radiation appointment. Davis was given a CT scan, and then fitted for his mask. Frankly, I still find the mask thing to be quite terrifying, but Davis doesn't seem to mind. What bothered me the most about the experience was that we weren't allowed to be with him. We have been fortunate to be with him for nearly experience. We are even allowed in the procedure room until he is under anesthesia when he is given his spinal taps, so to be ushered into a waiting room was quite an adjustment. The appointment was short and Davis was fine, so I guess I will adjust.
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| scary looking, isn't it? |
We spent the rest of the day in hemo/onc clinic or the procedure clinic. Davis was transfused in clinic until it was time for his spinal. While waiting in clinic, Kyle and I met with Davis's newly assigned psychologist, and then she met with Davis for a bit. Children's does a fantastic job at treating the whole child. Davis will meet with Dr. April on and off throughout the length of his treatment. She is going to start biofeedback therapy soon. This is going to teach Davis healthy coping mechanisms and teach him how to reduce anxiety, something that he suffers from (rightfully so). He was really impressed with her (as were we), and I think he is excited about learning the skills she has to offer him.
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| lines and dots courtesy of radiation prep |
Davis is a pro at LPs (aka spinal taps). Once he was awake enough to be transported upstairs, we headed back up to the clinic. He received the remainder of his blood and his chemo. We were able to head home before rush hour - a plus.
Our nurse coordinator contacted a local nursing agency that is able to assist us with administering chemo, accessing and de-accessing the port from home. One nurse met with us and watched us administer the chemo on Saturday, and one will come on Monday to draw a CBC and de-access his port. Davis will start getting bi-weekly CBCs because his counts (red blood cells, white blood cells, platelets, and ANC (immune system)) are expected to drop considerably. :( He may need weekly red blood or platelet transfusions, and/or he may need to stay home from school if his numbers prove to be critical. We are praying that this is not the case, but we understand that the drop in counts is a good sign that the chemo is working.
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| after LP, sleeping off the anesthesia |
With the exceptions of some nausea and a decrease in appetite, Davis is feeling pretty well. We have had a relatively normal weekend. We had the opportunity to visit with family and go to church. Lately, there has been plenty to do at home, so it has been a blessing to be at home so much.
We will give Davis chemo before school tomorrow, and as long as he feels well, he will go. The routine of school and homework keeps us very busy here. It seems our routine becomes school, supper, homework, chores, showers, sometimes reading if not done with homework time, bed. I don't know how other families do it, but it seems that we have very little time for down-time or TV, which is fine by us.
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| beautiful smile on an amazing young man |
This morning, our preacher shared a thought in his message that struck a chord with me. He said, "Your strength is from the struggle." He shared an analogy of how a hatchling - a chick - struggles to break free from its shell, but through that struggle, it is made stronger; it builds strength. Sorta like the old cliche, "That which does not kill you, makes you stronger." I agree. Don't get me wrong; I HATE CANCER. I hate seeing my son suffer. I hate feeling helpless at taking his pain away. But I love the lessons that our family is learning from this experience. I love how it has drawn us closer, slowed us down, helped us to focus on the most important things. I love how it has made us more dependent on one another and on God. We are truly learning to lean. We continue to marvel at our many blessings.
Our most earnest prayer is that Davis is healed completely and forever - CURED. We are with full faith believing that Davis will not relapse. We continue to pray that Davis is spared from both short term and long term side effects. We pray that Davis, his classmates, and all of the fifth graders remain healthy this year, so Davis can attend school as often as possible. We pray for Annakate's health and the health of her classmates as well.
We are forever grateful for your continued prayers and positive thoughts. The support we have continues to touch us deeply. We have family and friends like no other. Thanks to you, we truly feel that we are not fighting this alone.
We will keep you posted.
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