Fast forwarding to real time: 

Sam is in day 26 of the Total 17 clinical trial.  He’s responding as well as can be expected to all the chemotherapy.  He is in the “induction” phase right which lasts for 42 days for this trial (it’s a 3 year treatment clinical trial all in — “induction” then “consolidation” then “maintenance”).  

Induction phase is the most rigorous — basically a full scale assault on his bone marrow — he is not only taking oral chemotherapy daily, but he is also getting a liquid chemo infusion each Friday (on Day 15, last Friday, he got 3 different liquid chemotherapy medications infused (meaning given to him through the port in his chest).  For the first 3 weeks, he was getting 2 lumbar punctures per week (this would allow them to check for leukemia in his cerebral spinal fluid, a location that has historically been a “hide out” place for ALL). The lumbar punctures are done for now but the daily tablet form of chemo plus the Friday chemo infusions continue through induction.  (usually only 1 liquid chemo infusion per week). 

He also gets his blood drawn 3 times a week because one of the reactions his body has had to the chemo is that his kidneys hold onto water, which means his sodium level drops.  While this reaction is “within the norm” of reactions that ALL patients have to chemo, it’s not as common.  Not as common doesn’t mean “bad” — but we are learning as we go through this journey, there are both similarities in symptoms across patients, and symptoms that are less common (but have been seen by our doctors, albeit at a much lower frequency,  across wider swaths of patients). We are fortunate that Sam is under the care of a very experienced team of doctors and nurses, who have treated many, many, many patients, and this group partners with St. Jude’s Children’s Hospital for research and treatment protocols. 

We are also grateful that there has been so much research done in the last 5-10 years in pediatric leukemia: as a result, we know the mutation that Sam has; they can even employ next generation gene sequencing (NGS) to see leukemia cells to a 1/1,000,000 specificity (which is important because historically, leukemia has been able to “hide” and so efforts to trace it to its hiding places and being able to drill down and see 1 leukemia cell out of 1 million total cells is key to long term remission).  Flow cytometry, which is another diagnostic tool that is key to leukemia treatment, “sees” leukemia at a 1/10,000 specificity.  

So all this means Sam is doing well —he was at his strongest, health-wise, heading into this gut punch of a diagnosis and his body is responding as well as can be expected to the chemotherapy. And we are grateful for that. 

(Ps. Some of your reading this site are experts in this field so please elaborate on any points that you think would be helpful Sam’s audience and definitely, offer corrections if I missed something 🙂)