Today, Bryon had another dose of experimental treatment. It marks his 6th week in the clinical trial and so far he is doing great. The worst part of the day came right at the beginning, when the nurse attempted to start an IV. They tried in the left arm twice and had no luck. So, reluctantly, they tried in the right arm. They struck blood, but not before deciding Bryon was dehydrated and very cold, this made it much more difficult to find a vein. His arm hurt terribly the rest of the day, but they got the treatment done. We are crossing our fingers now in hopes the veins do not burn again. It was terribly painful to endure last time and it still hasn't fully healed. After today, the doctor has decided it is best to put a port in
Bryon's chest. Even if this chemo isn't working he will still have some kind of chemo treatments later on, so it just made sense to put one in and prevent undue torture.
Next week is the week we have been waiting for. The plan is to get the MRI and doctor visit done on Tuesday, stay the night in SLC, and then have the port put in on Wednesday. This is a big deal since it tells us if treatment is working, how fast the tumor is growing with treatment, and what the plan will be from here on out. We are trying not to get too worked up, but it is pretty hard since it is all that is on our minds. Bryon is feeling very good, his speech has improved significantly in the last week and he has no noticeable problems with his vision. These are all signs the treatment is working, according to the trial doctor.
We want to thank Josh Swann for doing the new layout of this blog. He has made it much more functional and easier to get the scoop on Bryon's whole story. He and his family are close friends to us and we love them for all their support.
There will definitely be an update after the trip to Salt Lake next week, so stay tuned!
It's nice to hear that things are going as good as they are. I'll be keeping my fingers crossed for you. If my schedule doesn't permit me to make it to the fundraisers, do you have a PO box or something where people can send donations directly? I definitely want to do my part, but am not always good at making it to events.
ReplyDeleteWell, hopefully the roads will be better for your next visits. As always, your family is in our prayers. Do your girls get spoiled by Grandma while you are gone??
ReplyDeleteHi, my name is Lena Leak. I don't know if you remember me but my little boy has leukemia and you came a supported me last year at our fundraiser. It meant a lot to me that you would support us even in your own trial. We had a port put in last March and wouldn't have it any other way. I know our situations are way different but it sounds like getting poked every week isn't working so well. Stay strong and please let me know what I can do to help.
ReplyDeleteAlso, my email is waymay99@plmw.com if you would like to keep in touch.
ReplyDeleteBryon will be happy with his port....especially after being poked multiple times. I promise, as a nurse, I hate poking as much as the patients hates being poked.
ReplyDeleteI am working on a PO BOX, I think that could be doable. Thanks for being patient with me...I just learning.
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