We are still here, folks.
Spring sports and end of the year school activities have been running us ragged!
Johnny has done very well being back on the original protocol. This one is SOOOOO much more tolerable for him, and the amount of nausea/vomiting/diarrhea has been minimal. He has had a very good appetite again, which makes me happy. I'm hoping he can put a little weight on now.
Johnny has a couple of friends coming in from out of town for this weekend's Bass Fishing Extravaganza. It should be a weekend filled with fun, fishing and friendship. I'm happy for Johnny that he will be feeling at his peak for this weekend. He really needs this!
I'll report back after chemo on Tuesday, and until then please keep praying for his lymph nodes to respond to this good 'ol chemo.
Please join us on our Relay for Life team, too. In the next couple weeks I'll have the details for Johnny's birthday celebration at the Relay and will pass on all the pertinent information then. JOIN TEAM TOAD HERE!
Wednesday, May 26, 2010
Monday, May 17, 2010
Back to the old stuff
The news from Dr. Ansari wasn't the best. He indeed verified that the cancer has spread to the upper abdominal lymph nodes and the the mediastinal (chest) lymph nodes as well. Also, the tumors in the liver have worsened even since surgery.
This very obviously means that the chemo isn't doing a thing to help, just making Johnny miserable. Dr. Ansari decided that since the original protocol (Folfox with Avastin and 5-FU pump) actually cured the lymph nodes along with the colon cancer, we may as well revisit that in the hopes of at least controlling the spread of the cancer to the lungs and beyond.
He will have four cycles of this protocol and then we will make more decisions. If it looks like there is some improvement, then we will stay with it for a while longer. If that still isn't doing the trick, then we are looking at experimental drugs. He mentioned a study that Johnny qualifies for, and we are willing to try whatever it takes.
We are trying to remain hopeful and positive, but the reality of the situation is that we are running pretty low on options.
I felt so bad for Johnny when he realized that going back to the old protocol meant coming home on the stupid grunting pump. He was also reminded of the cold intolerance that comes right along with it, too.
Please pray, my friends. We really, really, really need the chemo to start doing something to help. I can't think of anyone more miracle-worthy than my Johnny. I still believe it can happen.
This very obviously means that the chemo isn't doing a thing to help, just making Johnny miserable. Dr. Ansari decided that since the original protocol (Folfox with Avastin and 5-FU pump) actually cured the lymph nodes along with the colon cancer, we may as well revisit that in the hopes of at least controlling the spread of the cancer to the lungs and beyond.
He will have four cycles of this protocol and then we will make more decisions. If it looks like there is some improvement, then we will stay with it for a while longer. If that still isn't doing the trick, then we are looking at experimental drugs. He mentioned a study that Johnny qualifies for, and we are willing to try whatever it takes.
We are trying to remain hopeful and positive, but the reality of the situation is that we are running pretty low on options.
I felt so bad for Johnny when he realized that going back to the old protocol meant coming home on the stupid grunting pump. He was also reminded of the cold intolerance that comes right along with it, too.
Please pray, my friends. We really, really, really need the chemo to start doing something to help. I can't think of anyone more miracle-worthy than my Johnny. I still believe it can happen.
Sunday, May 16, 2010
Hoping and Praying
Johnny has had some really good days this past week and some really bad nights. I feel bad that I haven't blogged much, but with the boys in spring sports things have been really busy. To be perfectly honest, I'm also having a lot of trouble organizing my thoughts enough so that I would make a lick of sense.
Tomorrow is a big day. We meet with Dr. Ansari and find out what direction we will be heading. As we see it, we will either continue with things as they are for a while longer and see what happens, try a new protocol of chemotherapy, or try some new form of experimental drugs.
Thanks for all the cards, calls, Facebook messages, visits, and meals. I continue to be overwhelmed by the support our community has provided. We are surrounded by so much goodness.
Please send up your most powerful prayers tonight and tomorrow. Again, we are facing the unknown and that is always the hardest part.
I will update as soon as I am able tomorrow and will also add information about the Relay for Life. If you aren't already aware, it is July 10 and 11 at the Niles High School track. We are looking forward to having a great team and a GIANT birthday party for Johnny.
Tomorrow is a big day. We meet with Dr. Ansari and find out what direction we will be heading. As we see it, we will either continue with things as they are for a while longer and see what happens, try a new protocol of chemotherapy, or try some new form of experimental drugs.
Thanks for all the cards, calls, Facebook messages, visits, and meals. I continue to be overwhelmed by the support our community has provided. We are surrounded by so much goodness.
Please send up your most powerful prayers tonight and tomorrow. Again, we are facing the unknown and that is always the hardest part.
I will update as soon as I am able tomorrow and will also add information about the Relay for Life. If you aren't already aware, it is July 10 and 11 at the Niles High School track. We are looking forward to having a great team and a GIANT birthday party for Johnny.
Monday, May 10, 2010
Clearing out the fog
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.
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.
Monday, May 3, 2010
Devastation
Sorry, I won't be able to post much right now.
News from the CT is bad. Liver is worsening, despite both regimens of chemo. Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.
Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin. He will evaluate our options and give us an updated plan in two weeks. We may be looking at experimental options next. Radiation isn't an option. Additional surgery isn't an option.
Heaven help us. Please.
News from the CT is bad. Liver is worsening, despite both regimens of chemo. Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.
Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin. He will evaluate our options and give us an updated plan in two weeks. We may be looking at experimental options next. Radiation isn't an option. Additional surgery isn't an option.
Heaven help us. Please.
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