Outpatient Appointment

Jay went with Chan and I to the outpatient appointment because it was a 'shorter' appointment. We just went to the clinic (still at AFCH) where Chan received another Chemo treatment through his port. All went well. It was good for Jay to see what Chan does, though he still doesn't understand a lot of it. Jay was upset when we left the dr because he (Jay) did not get a poke...strange thing to be upset over for a kid.

We got the results for the blood MRD back yesterday and it was negative, which means that there is less then .01% cancer cells in Chans blood. In two weeks they find out what percentage of cancer cells are in the bone, and the hope is that it is less then .01% too. Which means we move into Phase 2 of cancer treatment. We are well on our way to achieving remission!!

Chans CBC (complete blood count) levels are lower then normal but still ok. Hopefully, they will rise again and we won't need a hemoglobin transfusion next appt.

Chans tummy is large, they told us that on the steroids that Chan would look like a lemon on a stick - big belly sticks for legs. I asked the dr about it last week because Chan seemed to be very uncomfortable in his stomach and they did a belly x-ray. His liver is enlarged, which isn't abnormal, but they want us to make sure that it doesn't get worse. Yesterday Chans NP put Chan on Lactulose which should help Chan have more bowel movements to get things moving a little more and hopefully make Chan more comfortable. Another use of Lactulose is for treating liver disease, though that isn't why we are using it maybe it will help Chans enlarged liver.

Once again I am completely overwhelmed and in awe of the support we continue to receive. I came home from a long day in Madison to a clean house and lots of fun treats and snacks on the table. I am so grateful for the amazing friends that have been cleaning my house every week - it is so nice to have that stress off my plate. I am grateful for everything everyone has done, and am still in awe over the generous gas card we were given yesterday. Each of these things eases our burdens so we can focus on our baby and getting him better without having to stress about all of the day to day things. THANK YOU, THANK YOU, THANK YOU!!!