Hello COTA for Eli and Jacob Friends and family!

It’s hard to believe we are nearing the 1 year mark of Eli and Jacob’s bone marrow transplants! A lot has happened over this past year, and the boys continue to improve. In their recent clinic visit to CHOP their engraftment numbers looked great and are holding steady.

Eli: 99% total, 96% t-cell, 100% myeloid and 100% B-cell

Jacob: 99% total, 95%T-cell, 100% myeloid and 100% B-cell

That means that the percentage of their bone marrow is 99% donor (healthy) cells. Woohoo! The hope and prayer is that they continue to remain that way!!!

We also got word this week that Jacob’s adrenal insufficiency (which had caused some scares and hospital visits this past year) is gone.

Despite the good news there are definitely still ups and downs though:  Because their immune systems are still developing they continue to be in a quarantine state… which means no play dates and no outside contact. I know we can all understand what that is like as many of us quarantined back in March of 2020…. but most of us quickly expanded our immediate family bubble and are now more “out and about” than back then. But, here is it is 17 months later,  and the boys have to remain quarantined – not just because of the covid risk, but of any risk of any type of cold, infection, sniffles, anything that could attack their weakened immune systems. 

The hardest revelation about this is that Eli and Jacob, who were hoping to be well enough to do in person school this year are only allowed to do homebound school. You can see their true thoughts on this in the photo below: 

Homebound school is very different than last year where they were able to be in a virtual setting with their classmates most of the year. It’s just one-on-one with a virtual teacher a few hours a day and then the rest of the day is independent work, all overseen by SuperMom Ali. On the bright side, Eli, being in 4th grade now (!!!) gets to participate virtually with his peers in learning a new instrument for online Band! He is sooo pumped! 

Both boys started Piano (virtually) over the summer. They are loving their lessons, and are progressing quite well! 

They continue to be super crafty and enjoyed a virtual summer camp sponsored by the Ronald McDonald House. They also made out like bandits with a gift card from the RMH for snacks on one of their Philly clinic trips. 

Dave and Ali continue to do an amazing job of keeping the boys’ spirits up. They all enjoy goofing off as a family – such as in this “chubby bunny challenge” — mmmm marshmallows!

And of course there are plenty of snuggles!