James has Wilms' Tumors (update 2)

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 throughout the first round. Next step is to get a biopsy on Friday to better understand the type of tumor and adjust the chemo treatments from there to better attack the specific type of tumors (second most likely)

4) Chemo is working as expected, but needs at least one more round before surgery (most likely)

The results were that the tumors have been shrinking, but the doctors want to do a biopsy (option 3). They like to see 30% shrinkage of the tumors. The smaller tumors in his lungs and on his left kidney all have shrunk by more than this amount, but the largest tumor on which is on his right kidney has only shrunk by 18%. A caveat to this statement is that the new scans show a lot of tissue showing up as white, which is where the cancer cells have died, but the tissue hasn't "melted" to be cleaned up by the body yet, so both dead and alive cancer tissue is still counted in the mass of tumor. The doctors will do a biopsy to confirm that the cancer is not a more aggressive form that is more resistant to chemotherapy treatment. If the cancer cells are though, the doctors will modify the treatment to help better fight the cancer. So, this weekend is the biopsy surgery and then we will skip next week's treatment to wait for results from the biopsy and to give James's body a chance to recover from the surgery. Then the following Monday (starting 7/25) James will start his next round of chemotherapy treatments.

Before the chemo treatments the tumors were quite large

And now after the initial round of chemo treatments the tumors have reduced a bit

Also, James is gaining a good amount of weight, so before he could be off the feeding tube for 4 hours a day and now he can be off about 8 hours a day, so James is mostly just connected to the feeding tube while he is sleeping, which is more convenient than having him wear the backpack all day while he's awake. 

On a separate note, one decision David and I made was to try to maintain a level of normalcy for Neil (our 5-year-old). We want Neil to still feel loved and know he matters while as parents we might be a bit distracted by James's cancer and Isaac being a newborn.

When we first learned of James's cancer, we canceled our trip to Utah for our family reunion this month. About a week before the trip, our cousin Trevin shared that he would be willing to take Neil out to Utah and then after talking through it, we realized that I could go with Trevin, Juliana, Neil, and Isaac to Utah for my family reunion and that David could stay back home with James so that James could still be within an hour's drive from the hospital.

The trip involved a lot of driving, but thankfully was also really fun. We loved being in Utah. We spent time at Neil's favorite place in the world-- the Provo Recreation center-- where they have a water playground, a lazy river, a regular pool, and enclosed water slides. Another highlight for me was completing Sulfur Creek hike in Capital Reef National Park at my family reunion with my extended family. Overall, it was a great trip, but we are happy to now be all together as a family back at home.