We’re experiencing several firsts these days. Of course, this is to be expected with a new baby.
Darby has finished her first month of existence outside the womb. Yes, we believe life begins well before birth, but that’s a topic for another time and place. She continues to grow, eat, sleep, make messes in her diaper, etc. As she is growing, she is becoming more mobile and routinely performs Houdini-like escapes from her miracle blanket.
We try to make sure she gets her fair share of tummy time each day. She’s getting better at holding her head up, but can only do so much.
We’ve had several first visits from family and friends, from near and far. Some even brought us food (thanks, guys!). We feel truly blessed and fortunate to experience everyone’s generosity and encouragement.
Darby’s first Christmas season was a busy one, even though we didn’t go anywhere. See above – first visits from family. We had a house full of people for the better part of two weeks. Although we enjoy spending time with our families, we are also glad to have a quiet house again. Darby sleeps much better without the extra stimulation.
It got a little chilly for some of our guests, so we had our first fires of the season.
All our visitors were helpful in different ways – some cooked, some cleaned, some kept me occupied on house projects, and some even read to Darby!
Other visitors were mindful of their own health and were careful to avoid getting Darby sick.
Aunt Karis came to visit while my mom was here, and she brought Abby to meet her new cousin.
All in all, despite the busy time the last six weeks have been, we are again grateful for our family and friends. Here’s one last Christmas photo for the collectors out there.
In mid-December, we needed a babysitter because we didn’t feel comfortable taking Darby with us to my regular oncologist appointment. Since no family was visiting at the time, Darby had her first non-family babysitter: Chuck D. No, not that Chuck D!
This Chuck D!
He reported that Darby slept the whole time, which was great news to us after a lengthy discussion with my oncologist. Is that an awkward segue? Whatever. My white count is up around 33k (normal: 4k-11k), with 93% lymphocytes. My platelets are down to around 75k (normal: 150k-400k). In the past nine months, my white count has doubled while my platelets have been reduced by half. In comparison, my white count was 88k when I was first diagnosed with CLL nine years ago. My lymph nodes are visibly more swollen as well. My oncologist feels that it’s a good time to start treatment again. We could wait, but why put off the inevitable? We have known for the last year that my white count was slowly but steadily increasing, and I would need treatment at some point. We just didn’t want it to be now!
So, I’m starting chemotherapy on Thursday with a new combination of drugs. In the past, I received the triple-threat FCR: fludarabine (Fludara), cyclophosphamide (Cytoxan), and rituximab (Rituxan). It was fairly successful, but Dr. Carroll is concerned about the long-term effectiveness of FCR. This time, I’ll be getting the Rituxan with a new-to-me drug called Treanda (bendamustine). Supposedly Treanda may have fewer side effects compared to the FCR therapy, but I’ll wait until after I’ve had it to espouse that claim. This treatment is shorter than the FCR therapy – it is administered over two consecutive days. The first day takes about five hours, and the second day takes about two hours. I’ll get between four and six cycles, spaced about four weeks apart.
Dr. Carroll also suggested that it may be a good idea to think about doing transplant again. We were caught a little off guard by this, even though it is consistent with what Dr. Sayegh (my former local oncologist) and Dr. Miklos (Stanford oncologist) said when we were thinking of doing transplant again in 2008. At that time, both docs said we should wait until I needed treatment, at which time we should consider doing transplant again. So, the thought of another transplant has been in the backs of our minds, but we were hoping for better circumstances. It’s hard enough adjusting to having a baby as two relatively mature and responsible adults, let alone caring for a baby during chemo and eventual transplant. We haven’t fully processed this information yet, so I’ll stick to the facts for now.
The good news is that I can likely have the transplant right here in Sacramento. The reason I went to Stanford in 2007 was that there wasn’t a transplant facility here. Since then, Dr. Carroll was recruited to Sacramento for the purpose of building a bone marrow transplant program. His 20 years of experience and credentials are impressive: He got his medical degree from Stanford, did an internship and residency at University of Chicago Hospitals, and fellowships in hematology and oncology at Johns Hopkins. Before he came to Sacramento, he was the director of the Clinical Leukemia Program and a member of the Blood and Marrow Transplantation Program at the University of Arizona Cancer Center. Before that, he founded the Blood and Marrow Transplant Program at the University of Texas Medical Branch. He was also on staff at the Bone Marrow Transplant Division at Johns Hopkins Hospital, and an Assistant Professor of Oncology at Johns Hopkins University.
We will take our time in thinking and praying through this decision. I have many thoughts swirling around in my head right now, and need to seek God’s direction. At the moment, I know I’m starting chemo this week. We’ll have to wait and see what happens. Please pray along with us as these decisions can at times seem overwhelming. We know that God is in control, but often struggle with trusting Him completely. This lesson is one we continue to encounter as we journey onward in our faith.