Soren isn’t complaining of anything other than needing to pee every 2h and awful tasting medicines, but he knows this is the route to getting healthy. He says he’s not in any pain. His blood work shows that the tumor cells are dying and releasing junk (urea, etc) that other medicines help to clean up, so he’s responding well.
The flip side of responding well is that it doesn’t look like Soren will make it home this week before his Thursday scans (CT/PET). There’s still a slight chance he’ll go home Thu night before starting the first cycle of heavy chemo on Friday Aug 2, which will run through Tue Aug 6.
We are thrilled by our recent and growing # of visitors; thank you.
You probably all know Soren as one of the healthiest, most athletic 6-yr old boys you’ve known. A few weeks ago we noticed his voice had been funny and local doctors believed the cause to be a swollen tonsil that needed to be removed. However on 7/23 Soren complained of severe stomach pain and very early on 7/24 Erika and Soren arrived in the ER of Boston Children’s. I (Vaughn) was out of town, so Erika handled this herself heroically. Following 72 hours of constant scans and biopsies in the ER/pediatric ICU, a great team determined that Soren has lymphoma. He has a particularly aggressive (and often treatable) form known as Burkitt’s, which has spread to his liver, kidneys, intestines, and obviously, throat.
Soren began chemo on Friday 7/26 and is doing well so far. His throat tumor has shrunk remarkably, well beyond the biopsy. The first week is a light course, but the first of multiple heavy courses (and all of the side effects) will begin on Friday 8/2. Given that we don’t know how he is going to react to that and they start to greatly restrict visitors at that time (due to the infection risk to Soren), visitors are welcome now. Soren tires a bit more easily now and is constantly connected to an IV but other than that is the same old Soren.
The current treatment course (if everything goes as planned – we hear that it never does — is 4-6 months.
This is going to be a long road and I am sure that we will need to utilize every ounce of support and offer of help along the way. We are grateful that Eric, Erika’s dad (“Bubba”) was here at the time of crisis and intends to stick around as long as possible. We have many folks willing to care for our corgis, Linus and Huxley. And food at home will be helpful, but especially for the parent staying in Boston (we are swapping), so healthy (greens and fruit) and portable meals would be amazing. I understand that gas cards and things that enable travel and hospital room living are already in our friends’ minds, and we are so grateful.
Soren’s doctors have already remarked that he is exceptionally tough (“the most stoic child I’ve met in 30y”), polite, and in good spirits. We are so proud of him. He is still a goofball and he’s sad he is missing baseball and soccer camps and daily swims. His competitive streak has turned to the Wii, which we previously withheld.