I’m happy to report a continued 0 on the NGS test (Next Generation Sequecing test that has specificity of 1/1,000,000). That means no sign of cancer since December 2022!!! #FULeukemia (Transplant day was March 29, 2023 but the blinatumomab or “blina” immunotherapy took his leukemia to 0 at the end of December 2022 thankfully).

His blood counts were all in the “green zone” too (normal range for any human his age) for the first time ever. LFG Stem Cells! 💪🏼

Oh and I almost forgot, his nurse practitioner said, and I quote: “Sam has beautiful blood! It’s just like any other 19 year old’s blood.” #FULeukemia

Starting on May 31, he began getting his vaccines again too. So far he’s gotten DTaP (diphtheria, pertussis, tetanus), HiB (Haemophilus influenzae type B), IPV (Polio), Hep A and B, Pneumoccocal, and Meningitis.

They found that giving live vaccines too early can result in kids getting the disease so they are waiting until 2 years post transplant (unless there is an outbreak of one of the viruses in his area or college and then they will probably move it up). Live vaccines include measle, mumps, rubella, and chicken pox.

He doesn’t have to get any shots while he’s away at school this fall but will have some to get in the future.

Out of an abundance of caution, we also had an appointment with a stem cell transplant doctor at Dana Farber on Tuesday August 27. She was *great* and super helpful at answering his questions. Mostly he was wondering about sun exposure and the possibility of graft vs. host disease: could a sunburn trigger GvHD now? Can he sit out on the quad with friends in the sun and with what recommendations? Or should he stick to the shade? Does he need to reapply sunscreen frequently throughout the day like he does now or is it ok to put it on thoroughly in the AM and then only reapply if he’s swimming or sweaty or doing something outside in the sun for 30+ mins?

It was so reassuring to hear that at 17 months post transplant, the chance of GvHD is 2% and that his immune system won’t “over react” if he gets a sunburn and cause GvHD (still, sunburn is always to be avoided :). He still needs to use sunscreen and reapply (as do we all!!) when outside to play sports or as a spectator, and wearing UV shirts for the pool or any extended outside period is recommended, but he doesn’t have to reapply if he’s just walking to class or en route somewhere indoors or shady.

The concern about his skin is due to the radiation treatments he had as “conditioning” to get rid of his original, leukemia causing bone marrow more than it is for GvHD. As a result of the radiation therapy, he is at greater risk for skin cancer.

We also found out that at Dana Farber, transplant patients stay with their transplant doctor for ongoing care and monitoring, while at LPCH, they return to their oncologist as the primary, and then see the transplant doctor for “survivorship” appointments annually. Sam will continue to have a peripheral blood check in December and then again at the 2 year mark in March (but can get this done earlier or later if he’s home or if he wants to, Dana Farber can run the tests), but after that, I think the testing will be maybe every 6 months or maybe go straight to annually.

And his DF doctor gave him her cell number and said he could text her anytime with questions or if his college medical provider has any questions, they can call or text her too.

Thank you Dr. P for adopting Sam! LPCH is still at the helm but it’s reassuring to have someone on the east coast, only 2 hours away, who knows Sam too.

#FULeukemia

#LFGStemCells

#TeamSamStrong

#LivingHisBestLife

Ps. When word got out that Sam was in clinic on August 8, there was a rush to his room. At one point there were 7 providers I think. Everyone loves Sam ❤️