Routine chemo appointment turns scary

After getting feedback from the other doctor's, we decided to stay with the current chemo medicines versus adding another other new drugs at this stage.

So we went in this morning for our "routine" chemo appointment (weird I'm writing "routine" and the word "chemo" together but outside of the emotional roller coaster the appointments have thankfully been pretty uneventful). The nurses in the oncology department are great and very experienced. So they access his port which was implanted when we started treatments beneath his skin and is how the administer the chemo and do the blood draws just like normal with the needle. But when doing the saline flush and blood draws, it's not working properly. So then another nurse takes a look and says it's definitely accessed properly but given it's not working, they try to access it again. She also thinks his skin looks a little puffy above it and they start to wonder if his port line is leaking fluid... SCARY!!! Next thing you know 5 people are frantically working on Jenson and of course you can sense they are getting nervous because this is unusual so then Jenson starts freaking out, screaming, and panting because he's getting scared. Then he hits complete meltdown zone in the midst of this chaos screaming at the top of his lungs. The nurses go to get an anti-clotting medicine to try to clear the line and all the while Doug and I are thinking, emergency surgery possible now today to replace his port.

I settle Jenson down and when they come back and try something else again, it finally clears and the line starts working properly. Whew! Very intense, scary time, and we're very thankful for the end result. Certainly not what we expected for our "routine chemo appointment" this morning. Just goes to show you "Jenson's Journey" is filled with many ups and downs and the key is to weather the storm. Exhausting morning though.

This weekend we went to a picnic with a new group called "Circle of Friends" through the Histiocytosis Association of America. It basically brings families together who live in a close geography to create a type of support group. There were 5 families at this first meeting with someone in their family who has histiocytosis. There were 2 adult women who have lived with it and been on and off treatment (one of which was the first diagnosed case of histiocytosis in California). There were 3 families with children with the disease. Everyone was in a different place on the journey ... for some it's in remission, others have had it go into remission and come back, and others are currently undergoing treatment for an active case.

We're excited about this group as it should help to better understand the disease and know that there are other families going through something similar who understand all the emotions associated with it and the impact on the total family.

One other HUGE blessing happened this past week. Several of my friends from my mom's group sent Doug and me an unexpected email. They said they wanted to continue to provide meals for the day of chemo appointments, they want to babysit for us once a month so Doug and I can have a date night, and they want to babysit once a month for several hours for Doug during the week to give him a break also. WOW. What an incredibly generous gesture! We were blown away.

We have experienced many things on this journey, but the kindness of others is definitely one thing that stands out.

Kristin