Mr. D and Mrs. M

Happy New Year! In our last update we shared that James completed radiation treatment for the tumors on his lungs. Since our last update, James has continued to have chemotherapy treatments, and his last chemotherapy appointment is on January 30.  We were able to complete a scan of his lungs to see the impact of the radiation: The lung tumors did not melt away or shrink, but they appear to not be growing, which is good news. The doctors were able to all come together after the Christmas holiday to make a plan and shared that they would like to perform surgery to remove the tumors in his lungs. The plan is to have a surgery to the left side first on February 17, give James some time to recover, and then have another surgery to the right side on the week of March 6. The doctors believe that after the surgery James will continue to have 100% lung function capacity, which is also good news. It's been a long journey for us, but it's hopeful for us to have an end plan and we hope th...

James ringing the gong to celebrate the end of radiation  Happy Thanksgiving!   In our last update we shared that James’s surgery on his abdomen went well. The surgeon was able to remove James’s right kidney alongside a large tumor (weighing in at about 2 lbs) and additionally 11 small tumors in his left kidney. Afterwards James spent a couple weeks in the hospital with David recovering from the surgery.  After recovering from surgery, James was well enough to undergo radiation for the remaining tumors in his lungs. The surgeon felt confident she got all the cancer from James’s abdomen, so we didn’t need to do radiation there, just his lungs. The doctors did a scan to map the tumors in James’s lungs so that they could make a plan for where to do the radiation. They fed the information about the tumors to a program and received a plan for the radiation so that it could get the visible tumors and also the likely small ones that we couldn’t see. The time in the radiation mac...

  My last several entries have been about James and his kidney cancer. I plan to write another update about him soon since today we celebrated his last day of radiation, but instead of writing about him today, I want to write an entry about my little Isaac. Isaac is a very sweet and happy baby. He has a great temperament and while its been challenging waking up with him and James's feeding tube each night, I feel like I couldn't have asked for a better baby to join my family. Isaac is now 5 months old and he's been a lot of fun and has given us a lot of laughs. I really enjoy data and metrics, so here is his sleep chart, which I'll describe a bit below: On the left axis you see the time of day and then from left to right is time from when he was born in May through now 5 months later in mid October. The dark spots are when Isaac is sleeping. You can see Isaac typically goes to bed around 21:00 (9:00pm) and then wakes up around 7:00am. There are little white gaps at nigh...

James’s surgery on September 8th was a big success and went as well as we could have hoped for! Today, James and David came home from the hospital after a 12-day hospital stay.  Before the surgery James was given some medicine to relax him. David was holding him and a few seconds after he just started laughing, smiling, and waving at everyone. After David said goodbye, the doctors took him to the operating room; we were told that he smiled and waved at every person he passed, charming the whole floor. The surgeons removed the large tumor and kidney on the right side and 11 small tumors in the left kidney, as well as some lymph nodes around the abdomen to test if any of the cancer spread. We are still waiting on the results from pathology to know the exact weights of the tumors, their full composition, and the lymph node results.  David called me on FaceTime after the surgery for his conversation with the surgeon and it was really special seeing her describe the results of the ...

On our last update we shared that James was going to have a biopsy to learn more about the kidney tumors and try to understand why the tumor on the right kidney did not shrink as much as expected. The doctors wanted to rule out a possibility that the tumor cells were a particularly aggressive and chemotherapy-resistant type they called anaplasia cells. If the biopsy had revealed that the tumor had those cells, the doctors would have needed to ramp up the chemotherapy treatments for James to something much more aggressive (basically the highest James could tolerate). Great news was that they did not find this type of cancer tissue, but instead learned that James had some other rare cancer tissue that had matured to be more like muscle tissue that isn't dividing rapidly. This understanding helped explain why the right kidney tumor did not shrink as much as expected. The doctors told us that the tumor would not shrink much more from the next round of chemo and the surgeon will be able...

Thank you for your continued love, support, and prayers.  An update for James is that yesterday (7/11) James had his sixth chemotherapy treatment, which is the final treatment of his first round of chemotherapy. Last Friday (7/8) he had an MRI and CT scan to check the progress of the chemotherapy treatments, which yesterday we received the results for. These results were our first chance to see how well the chemo is actually doing. Here were the options: 1) One round of chemotherapy miraculous got rid of all the cancer in his body (0% chance) 2) Chemo reduced the tumor's size to the doctor's satisfaction to proceed with surgery. Surgery will take place on Friday to remove the largest tumors and radiation to remove the smaller ones. After the surgery more rounds of chemo will be needed to prevent the tumors from growing back (pretty low chance of this) 3) Chemo isn't working as well as expected, as in the tumors didn't shrink as much as the doctors would have expected th...