Chase is Back Home Safely

Chase is ecstatic to be home and sleeping in his own bed for the first time in several weeks. So much so, that he chose to forgo the opportunity to open up his welcome home / get well presents until tomorrow. He just wanted to go straight upstairs, watch a bit of TV, chill out for a while and then crash early. That was the sentiment of the whole family, so we followed his lead (except me to take a short break to write the update).

Barbara came to the airport to greet Chase, along with Auntie Grace and they decorated the porch and his room for him, along with lots of messages from his cousins. He’s just thrilled to be back in familiar territory and looking forward to getting together with his cousins this coming weekend (his favorite thing to do).

Our exit meetings with the doctors at the Burzynski Clinic went well – Dr. Burzynski was very encouraging and optimistic. We’re certainly expecting good things – hopefully soon (although we’re not looking forward to returning to Houston – let’s just say, it’s not on our top 10 list of places to visit, from traffic to weather, to construction, etc.). We have new MRI and PET scans scheduled for Thurs; however, they aren’t necessarily expected to demonstrate progress just yet (although it would be great if they did) – they’re really intended to be our “baseline” from when we get Chase up to his target dose (or close to it). From there, we’ll be monitoring with MRI’s about every 5 weeks and hoping that the following scans will demonstrate some initial progress. The fact that Chase was able to get so quickly and “uneventfully” up the curve of his ANP doses is an encouraging sign to the doctors that his system is using the “boost” to do the job it’s intended for (i.e. if it wasn’t working, it would typically have more difficulty accepting the infusions).

We have several more things to work out on the home front this week to get things “stabilized” with his ongoing treatment plan. Over the next couple of days, we’re interviewing / meeting with a couple of home-care nurses to select one that will assist with his ongoing bloodwork (every other day), catheter needle changes (weekly), etc. We’ve also got meetings with two food preparers in the area this week, hoping to select one to develop a weekly meal plan, assist with natural ingredient selection, prepare a couple of the meals to lighten the load, while teaching Carol some of the vegan recipes, etc. We also have to follow-up with the local Pediatrician and Oncologist who will be monitoring the treatment plan and providing ongoing reports back to the Burzynski Clinic.

Overall, we’re glad to be home and anxious to get over the hump with “settling in”. If we can get all these things worked out this week, we’re hoping to be in a position to get Chase to start school next week (at least half days) and come home for a good home cooked lunch with mom. That will be a huge milestone on the way to normalicy on the home front….we’re not far now and we can see the light at the end of the tunnel…

Thanks for all the support and prayers – we’ve collectively succeeded in getting Chase back to familiar territory and hopefully soon back to the routine he remembers (at least close)….

Love,John & Carol Sammut
Chase & Barbara Ann