Emily had her first maintenance appointment today. She had her vital taken and then she got Vinchristine IV. Tonight we will also start her pill called 6mp, which she will take for the next 18months every day. She will also be taking Prednisone once a month for 5 days, we will start that tomorrow because you need to get 3 doses in each day and today was too late. She will also be taking methotrexate pills, once a week. She has had methotrexate IV and IT before but this is the first time she's taken the oral version of the medication.
I was very concerned and actually really upset yesterday when I misinterpreted the results of her recent labs. Her ANC was over 3000 and her WBC count was really elevated. If she had been on chemo it would have been odd for readings that high. When I asked Dr. Link what he thought of her lab results he thought they were great, he said it means her bone marrow is working. So the results I had interpreted as bad were actually good. Both Dr Link and our NP Karolina were very nice and explained to us that many families go through a lot of stress when they go into maintenance because of the illusion of less care and a big change in routine. I can tell in how Tracy and I have been acting that the stress has been getting to us, but I am also hopeful that we will soon be able to relax and enjoy the milestone that Emily has achieved.
In early December she will have another CT Scan and chest x-ray to have a see what's going on inside. Hopefully in late December she can have her port removed.
I can't believe it's going to be a full month until her next exam ! :-) Go Emily.
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5 comments:
Your medical team is good to tell you that this stress you are experiencing is normal. You guys have been in serious battle mode and on heightened alert for months and months. So your bodies and minds will need to take some time to adjust downwards to the "new" normal.
You're doing great. It is a milestone. I just like how you acknowledge the stress, it is the first step to dissipating it.
Hugs to all!
Congratulation Emily on beginning maintenance. What a milestone for Emily and all of you. Chris, I am so grateful for your successes so far and I really appreciate all the information you put out there so that we can continue to give you and Emily support. I am hoping to have lunch with Mrs. Smith tomorrow and will make sure to stop in to see Emily.
Love to all of you.
mrs. breit
Sounds like things are going great for Emily. We are so happy to hear about her hitting such a major milestone. Will her medication during maintenance make her sick? We sure hope not. You guys are all simply amazing, we think about you all the time. Sending lots of love and good wishes!
fantastic to know you are in maintenance! YAY! What an amazing milestone for you all.
i can only imagine it will take time to adjust to a new sense of "normal life". be good to yourselves and each other!!
What an accomplishment! Way to go Emily and the Pepper Family!!!!
Love,
Marcy Leary
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