CAL-101 Day 113

I am finnally getting around to sharing this update on my blog. It's been a full day.

More good news today! John's lymph nodes continue to shrink considerably and his blood is within normal range in every category.

At this point, we can't see any lymph nodes. So we would only be aware of changes if they were getting larger. There is one in John's neck that he can still feel and we were a little nervous because he thought it felt slightly larger. But apparently it's not. He is so skinny right now, I wonder if he can just feel it more because his neck has gotten so thin. I wasn't expecting bad news, but I was so happy when Dr. Flinn said the nodes had reduced very significantly even since the last scan (two months ago). He said even if they just remained stable, he would be happy. So he was very pleased with the results. He had a big smile on his face when he started to tell us the degree of reduction in the nodes that we can't see. Seeing his response made me think that John's results may even be exceeding Dr. Flinn's expectations.

I told Dr. Flinn that I would be seeing him again on Tuesday because Marian (John's mom) has her appt. I go along with both of them. So I see Dr. Flinn twice as much as his actual patients. Last time Marian saw him (three months ago), he told her that she was approaching the threshold for treatment (probably within the year) and I expressed my reluctance for her to do the harsh chemo John did at her age. Today when I mentioned seeing him again next week, he told me that there are several non-traditional options right now - good options for avoiding FCR - that she can consider. He said (with enthusiasm) that there are a lot of good things in development right now for CLL.

I can't do this justice because John's delivery makes everything so much funnier, but he responded to Dr. Flinn, "So, Doc, what you're telling me is ... this is a really exciting time to have CLL!" Dr. Flinn busted up. So did I. This is my husband. He never misses an opportunity for humor. I doubt Dr. Flinn has many patients like him.

When Dr. Flinn walked out of the room, I was beyond happy at the great results John is getting. I looked at John and said, "Have I told you today how much I love you?" (I say that a lot and the answer is always yes. I tell him almost hourly.) My eyes misted up (as they so rarely do ... ha ha ha) and at that moment Dr. Flinn came back into the room. John is always concerned that someone will think he made me cry in a bad way, so he quickly told Dr. Flinn, "She's so happy she's crying." 

Dr. Flinn has had to hand me a tissue on more than one occasion for fearful tears. So I think he's getting used to my emotions. By the way, have I mentioned what a great doctor/guy Dr. Flinn is? I can't imagine having another doctor care for us. He is super!

Anyway, we had to sit around and wait for John to have his blood drawn a second time (90 minutes after the first draw) for the clinical study. And then we were so glad to be able to leave, we took off without making his next appointment. I will have to call about that tomorrow.

I meant to write this update this afternoon when we got home, but I got distracted responding to an email and Facebook comments. And tonight I had a wedding shower to attend. So this is the first chance I've had to share this great news on my blog.

This CLL experience has been quite a rollercoaster ride emotionally. I've had some very anxious days and moments. But I knew early on that God spoke to my heart and told me to put my faith in HIM and His promise that He is working all things for our good ... even this. I have held onto that in the really difficult times and His grace has sustained me. No matter what we go through, God is faithful. And I'm so very thankful that He has given John some relief from his symptoms. I am thankful for every single day He gives us.

Please continue to pray for Marian (John's mom) and Lillian (John's sister). Marian also has CLL and it is slowly progressing toward treatment stage. We are hoping she will be stable when her blood is checked next week. Lillian is facing more surgery. And she has already been through so much. We don't know yet if she will be coming to Vandy or going to another facility. It is my heart's desire to do all I can for each of them as they battle their individual cancers.

Comments

Stephanie said…
Shari,
I am so happy things are still going so wonderfully for you and John. Tim is off of CAL 101, because of a major set back, nothing to do with the CAL 101., but cannot continue on it.
It has been a major setback for us and how we long for CAL 101 and the greatness it was providing us. Maybe new things to come? Praying for the best for all CLL's
Stephanie

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