A quick update, since many of you have asked how things are going now that Jonathan is back home. 

You really don’t realize the toll a long hospital stay takes until you’re back in your own space. Being home has already made a huge difference for Jonathan. He’s feeling so much better than he did in the hospital — even though he says he’s only at about 25–30% of his normal self. Still, in his words, “every day is better than the day before.” 

It took just a few nights at home for the heavy grogginess — which had doctors worried about his safety — to lift. He’s sleeping longer and more soundly each night, which has been a big help. 

Physically, he’s been doing better than we expected. He handled the stairs surprisingly well, and every day we’ve been taking short walks around the neighborhood. On Wednesday, we even walked Duke as far as we used to before he got sick (with the help of his Rollator walker — at least until PT gives the green light to go without it). 

While in the hospital, his legs had swollen significantly from fluid retention caused by medications and blood products. His legs looked like large tree trunks, and he had major cankles. Now, the swelling is mostly gone — just a bit left in his feet. He’s working on that daily with compression stockings and lymphedema wraps, hoping for the day when he can ditch those too (again, waiting on PT!). 

One of the hardest adjustments for Jonathan has been the loss of independence. He isn’t allowed to tend his beloved garden 😞, can’t be left home alone until doctors say it’s safe, and we’re not sure when he’ll be able to drive again — though, to be honest, he’s not quite ready for that anyway. Actually, if you ask him, the biggest challenge might be me constantly nagging him about sugar and sodium, now that we’re watching his blood pressure and blood sugar closely! 

Tomorrow we have a full day at the BMT Clinic. We’ll be meeting with a Nurse Practitioner, Leukemia Coordinator, and Pharmacist to get a clearer picture of what outpatient chemo will look like. That first 4-week cycle starts Monday, June 30. 

Thank you, as always, for walking this path with us. We feel the love and support every single day. 💛 

Love, Alli & Jonathan