At least now we know...

So today we had the PET Scan and initial oncology appointment where we met our cancer doctor, Dr. Eric Chen. We were way comforted that he seems like an extremely knowledgeable and genuinely compassionate guy. Easy to talk to and good "bed-side manner." But still, no matter how nice the doc, you really wish you didn't have to meet him in the first place. And then of course, he has to tell you what you don't want to hear:

Doc: "So I see you already got your CT results from yesterday"
Us: "Yeah and it looked like it was only in the neck area"
Doc: "Well..."

Then we got the news we were hoping that we didn't want to hear. The cancer is in his neck, chest and abdominal area (cervical, thoracic, and retroperitoneal lymph regions). It hasn't spread into his pelvis (which is good), but it does look like it is in his spleen. So there is cancer both above and below the diaphragm, and in an organ. So we have Stage III.

It was a good thing we brought a list of questions with us, because at this point all our thoughts became a tangly mess. We were really starting to think that we caught it early - from the look of the nodes during the biopsy and the CT scan yesterday. Guess not.

But now because it is Stage III, we need to make sure that it is not Stage IV (which would be if cancer has spread to the bone marrow). So then AJ had to have a huge needle stuck into his hip bone just above his left buttock, to aspirate bone marrow and take a sample of the bone itself. It was so painful to watch him laying there in aching pain and also terrified about what we just found out. We should find out the results in about a week. The good thing is that we don't have to wait for the results to get started on treatment.

Dr. Chen says the treatment regimen won't change in essence based on the stage, it just changes the length of treatment.

Treatment is going to be "ABVD" chemotherapy, which stands for the four chemotherapy drugs that he will have. Doxorubicin (Adriamycin), Bleomycin, Vinblastine, and Dacarbazine. He'll get a dose of each drug (total infusion time will be about 2 hours) one day every two weeks. The time in between each treatment should give his body time to recuperate and gear up for the next dose. If it were stage I, it might only be one round (one cycle = two treatments = one month). But because we are dealing with Stage III (hopefully, or perhaps IV) we are looking at a minimum of 6 cycles, or 6 months.

They will do another set of tests (a PET Scan, and a bone marrow aspirate if the one now comes back positive) in 4 cycles to see how it is responding. Even if the results don't show any cancer, we would still do the last 2 cycles (2 months) just to make sure we got it all.

The scary part about this is...well, everything. The good thing about it, if anything can be called good, is that even if the chemo doesn't work, we could still get it with a bone marrow transplant (BMT). I don't know if having worked at hem/onc at Children's helps or hurts my images of this prospect. On the one hand, I have seen how a BMT can be a family's biggest miracle and blessing. On the other, I have also seen how scary and challenging it is. But, that is down the road and only if the chemo doesn't work.

One of our biggest fears is that we won't be able to have children. We want to have a family so badly and it is just heartbreaking to think about that possibility. The chemo might cause infertility, but at least leaves us a chance. But if we have to do a transplant, it wouldn't leave a chance at all.

We are so lucky to have amazing people in our lives to help pull us through. We called my parents and they instantly changed their whole evening to come be with us as soon as they could. My dad was just flying in from a business trip in LA so my mom left him several messages not to get on the shuttle up to Anacortes and that my grandparents would pick him up, and she drove down to pick him up from Grandma & Grandpa's and they came over just to hold us and cry with us. Before they got there, we talked with mom & dad Steinbrecher over the webcam. It was so difficult to tell them and not be able to hug and hold each other. So hard to watch them try to understand from so far away, why they have to see their son go through this. But we will beat it, and then we will have a big party and they will fly out and celebrate with us and we'll hug and hold each other and cry big tears of joy.

It is hard not to get way down. And we are going to have to struggle to stay positive and confident and remember that we are in this battle for the "long haul." We are going to have good days and bad days. We can't let the good days get us too high that we fall too low, and we can't let the bad days get us too low that we can't get back up.

We just ask for prayers. Prayer has no limits and we know that God does not give us more than we can handle. Please pray for Andrew, for us, and for our family...and for everyone else who is going through this or something similar or something worse. Keep praying.