The COTA volunteer team took the week off to spend time with their families for the holidays. During this time Ali and Dave were able to spend quality time with their boys and their parents in their rental home in Philadelphia. Though it might not be their Falls Church home- being together is the best “home” no matter the location!

If you haven’t heard yet they have had some terrific news as of late: 

1st – Eli was discharged from the hospital on December 11th

2nd – Jacob was discharged from the hospital on December 15th 

They got to close out the Hanukkah week as a family, away from the beeps and pokes and prods of the hospital! 

Then this week we received an update from Ali that “both Eli and Jacob’s engraftment studies came back at 100% donor cells. This is fantastic news. Of course we will continue to monitor this for the next several months…” 

As they move forward, each week the boys will have clinic visits, blood work, along with small procedures or things to keep their medical equipment in check. For example, today they had labs drawn, check ups, med updates, dressing/cap changes for their equipment and gtube changes. They’ll also check for the engraftment percentage through plasma check every so often at these clinic visits- and this first one was such happy news! 

Last week Jacob’s labs came back positive for a virus but he doesn’t show any symptoms. His liver numbers were also high so they retested them again last Thursday – we are hoping for stable numbers from today’s visit. 

Oh and on the way to the clinic today Jacob lost his 8th tooth! We’ll hope the tooth fairy brings some extra special care tonight! 

It’s been nice to be on winter break right as they arrived home – no school to do – just family time. They do take meds in the am and pm, as well as broviac (central line) flushes in the morning. Both boys are still rather tired as their bodies are working so hard, but they are starting to eat more by mouth, which means less gtube feeds. 

When asked what has been your favorite daily activity you’ve done since being out of the hospital Eli replied “Making bracelets with the rubber band loom.” And then in typical younger brother fashion Jakey beamed “same as Eli!”

Well here’s to a lot more crafting, resting, healing and eating in the days, weeks and months ahead. The boys start attending virtual school again on January 4th and in the meantime we all wish them a Happy New Year! 

And lastly – we want to wish Grandma Nancy a very very Happy Birthday! Thanks for all you do for all your love, help, and snuggles!