There have been so many things rolling around in my head over the last week. I feel like I left everyone hanging with the dreadful news that the cancer has spread. I’d really like to clear up a few things that I may have left a little foggy.
We are still on schedule for chemo next Monday. However, we don’t know for sure if Johnny will still receive the CPT-11/FUDR protocols. If Dr. Ansari has reviewed everything and has decided that he believes the lymph node involvement to be a new finding, then the old protocols stop.
If he feels the lymph node involvement was there prior to starting up chemo again, then we will most likely stick with these protocols for a while longer and continue to watch the liver/lymph nodes. Avastin and Oxaliplatin may be restarted if he feels they will help the lymph nodes. Johnny received Avastin at the last session.
If it is determined that the chemo is doing nothing to help Johnny, then we start seeking experimental options. There are some amazing studies showing great promise. Every successful chemotherapy agent has had its start as a study drug. It may be just what we are looking for.
Please know one thing: We are not giving up. Neither one of us would ever give up on each other or our boys. Ever.
I have been questioning my focus quite a bit. Obviously when you get such soul-shaking news you start to think. Of things. Not always pleasant things. Scary things. Sad things. Things that you dare not say out loud for fear that they might come true. Things that you never thought you would be facing in all of your life. Things that absolutely can’t come true.
I have decided that my focus cannot center around the “what if” scenario and all the scary things that have crept into my mind. My focus must center on the fact that we still have hope. We still have options. I still have Johnny. I will not let him go easily, I can tell you that.
My faith in God and the power of prayer is just as strong as ever. Again, though, I feel like it has taken the back burner to my fears. I had a nice long conversation with the Great Healer the other night and I apologized for not thinking He could do His job. Of course He can. And I can’t think of anyone more worthy of healing than my Johnny. If this is a test of faith, then I certainly want to pass!
I have a whole lot of other things that have been cluttering my mind, and I will probably be unloading them on the blog over the next several days. It helps to get them out of my head and “on paper” -- so to speak.
Thanks to EVERYONE for the calls and visits. We love them!
Also, to the Niles Sluggers’ families: You Guys Are Amazing! Thanks for adopting us and feeding us for the last 10 days. It seems like just when things get rough for us, someone is there to help us through. The meals came at just the right time, a time when I just couldn’t even wrap my head around preparing meals and Johnny was too sick to take it on himself. Thank you, thank you, thank you.
Being part of the Niles Community is a huge blessing. I don’t know how we will ever be able to pay it all back. I’ll spend the rest of my life trying.
And now, I just ask for the prayers to continue.
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There is not need to pay back the people who help you and your family. This is one of those what goes around comes around moments. What your family has already given to the community and to the youth of Niles, is the communitys way of paying your family back. God Bless.
ReplyDeleteWe all know to much about the thoughts in your head. Don't give up hope and easier said than done...STAY POSITIVE! Just when the emotional roller coaster desides to go full speed, give him a big hug and hold on for a few more minutes. Lots of love, hang in there.
ReplyDeletePam, reading your blog brought tears to my eyes. I try to "feel" your pain, and you do an excellent job of expressing yourself in your writing. Your strong faith in the Great Healer will get you through this. I pray that the love and prayers of all your friends and family will give you, Johnny, and the boys the strength. (((Hugs)))
ReplyDeleteGod never gives us more than we can handle & he helps us handle what we are given. Keep the faith... "STAY STRONG"
ReplyDeleteAs always, you guys are in my prayers.
ReplyDeleteStay strong praying every minute of the day for all of you.
ReplyDeleteHi Brawleys!
ReplyDeleteI was away for a few days and without computer technology but was glad to read the new post upon my return to the computer world.
Ya know, Miss Pammie, I know your faith is strong and I know that none of you will give up...I am glad that you are not dwelling on the what ifs but I hope that you won't spend a minute beating yourself up about the scarey thoughts that creep their way in from time to time. There is a measure of self preservation that is beyond our control that allows those what ifs a way in.
Someone at Riley told us that our job was to recognize the what ifs will show their mean/bully little ugly faces (and usually when you least need them) but to pause the second the thought leaves your head and say to God "we believe! we trust you and we will explore every option you present to us!"
You will end up praying AND feeling like you have some control over the little uglies.
It was an easy thing to do and it really did help us refocus on what was most important...
Remember that we love you all and are praying right along with you!
xoxoxoxoxoxoxo
Georgeann, Derek, Chad and Ryne
When we are given the bad storms, we have to learn to dance in the rain...and of all people, you guys are the greatest "dancers" ever !! Hang in there Brawleys ! We love you all !!!
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