About our visit to SCCA

We started the day at 3:45am (yuk!), but things went well anyway!
The roads were clean and dry, so the traveling was great both ways.
We started at Registration and from there to Labs. We gave them some envelopes that BJo made for the patients with Hickman lines. That was fun - the nurses were so excited, and they immediately started laying them out for the patients. There were smiles and excitement as they did so, and they didn't even know I was watching them.
Next appointment was a Pulmonary Function Test. The results were as good as or better than last time.
The dreaded Bone Marrow Biopsy completed the testing. Luckily it was only one side and only bone marrow, no bone or skin taken.
Lastly was the GVHD Evaluation and doctor visits. We really like the clinic nurse that sees us during these LTFU (Long Term Follow Up) visits. We feel taken care of.
We saw a new Primary Provider, and really liked him too, though he admitted that he really didn't have a lot of answers, because Terry's case is so different than he has seen. (We really hear something like that every time we go - Terry is really throwing them a curve they have not dealt with before - we don't have answers either - it's just the way it is. We hope that something good will come from it all.)
Our Attending MD was a doctor we had seen during Transplant, so she was familiar with our case, but still had no answers - you know, it's different than they have seen...still.


WBC = 3.41 (norm is 4.3-10.0)
RBC = 4.07 (norm is 4.40-5.6)
Platelet Count = 58 (norm is 150-400)
Neutrophils = 1.81 (woohoo, normal is 1.80-7.00)
ALT = 91 (norm is 10-48)
AST = 99 (norm is 15-40)
Cholesterol = 138


There were two reasons for this visit -
1 - To evaluate the GVHD (Graft Verses Host Disease) after his DLI (Donor Lymphocyte Infusion).
2 - To evaluate how Terry responded to the DLI - did it improve the chimerism/donor graft?.

The evaluations were somewhat completed -
1. Terry doesn't seem to have much or any sign of GVHD.
2. They are waiting for results from the bone marrow, to check the chimerisms (remember that ch is a k sound and the first i is a long i).

They talk about Terry a lot over there, and it will happen again on Wednesday when the doctors have their meeting. They will discuss Terry's disease at this stage and consider all options. They will report to us sometime Friday. We know that is what they told us, but we also know that it could be delayed for some unforeseen reason. However, we do expect to hear something Friday, even if it is to learn that they are still talking it over and studying up and ....
They are looking at his disease status (CLL/SLL) and the chimerism status.

What are the options?
1 - A second DLI
2 - A second stem cell transplant
a - with a different donor
b - with the same donor
3 - Do nothing for a while and see what happens

At this point we tend to like option 3, but that might change after we hear the lab results.
This is kind of our last chance - at least they only do two stem cell transplants, and if that doesn't work then what????? Of course we haven't made any real decision and we will surely take it to the Lord to see what He would have us do.
We are taking it one day at a time - just like yesterday and the day before and the day before, and ....

Now, it's time for a break after reading all of this. Do you have a nice cold glass of water available? I'd even go for some chocolate! How 'bout you?

Thanks for sharing your time with us. We're happy you're checking in! Have a great day!