It’s Been a While

It has been a long time since I’ve written a blog post. I have been so incredibly busy lately that taking the time to write is mentally exhausting. I felt as if I should try and write an update though as it has been a while since I have updated everyone on how Luke is doing and what is going on.

Since my last post, Luke has had three rounds of the immune therapy. At the end of his second round, end of August, they did a second PET scan to check to see if there was any change since his first scan. This showed that the areas of activity from the first (along his spine) had diminished. The only area of activity still visible was in his left hip. However, the doctors weren’t convinced that this activity was due to the leukemia or something else (PET scans are not a diagnostic test, it merely shows area of activity). They decided to do an MRI of his left hip and have determined that he has what is called “avascular necrosis”. This is when there is a decreased blood supply to the hip joint causing the tissues of the bone in the joint to die.

For now this is not our top concern as it can be dealt with later. Yes, it causes Luke to have pain in his hip but thankfully he has medication to help with that pain. Since the leukemic lesions on his spine have gone away and the compressed disc is no longer compressed, he no longer needs to wear a back brace and his back pain is almost completely gone. We are both very thankful for this.

Last week Luke had a another bone marrow biopsy. The preliminary results seem to point toward the marrow being clear from leukemia. They don’t have the final report but this is promising. In addition to this they performed a chimerism test which tells us if the cells in Luke’s body are Luke’s original cells or donor cells. This is still at 100% meaning that Luke’s cells are still completely Ben’s donor cells. This is good news, but still presents a challenge.

So where does this leave us?

Isn’t that the million dollar question!! Its been hard trying to navigate this relapse as Luke’s situation is so unique. Right now we are in a place of uncertainty. Luke had a relapse of leukemia in the cortex of the bone (outer layer) but it did not involve the marrow itself. While he is currently in a position where there appears to be no leukemia in his body, they cannot confidently say whether he is in remission. There is no clear cut path or best option for next steps at the moment. His oncology team is working hard to come up with potential options and to seek out resources and opinions from others.

For now he will continue to do another round of the immune therapy as he responded well to the first three rounds. This is not a cure but it should help to continue to keep any leukemia in Luke’s body at bay. In the meantime, the doctors will continue to determine what options are available to us and help us weigh all the risks and benefits. We feel truly honored to have such a wonderful team working so hard to try to help Luke.

I know this news is a bit happy and crappy, but we try to stay positive. Luke is potentially leukemia free, his spine is healing, and we have each other and so much love. We appreciate everyone’s support and love over the last two years. It means the world to us to know we have so many people in our corner rooting for the best. We will update you when we know more and ask that you respect our decision to send out updates in our own time.

p.s. Since I just can’t resist here are a few more pictures from our photo shoot

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