Posted on August 28, 2016
Heres a recap of the last month since Jaxon's visit to ICU:
Broad spectrum antibiotics helped fight off a variety of infections including CDIFF
. His Buela and Beulo came to visit from DC to help with Joe Thunder returning to school. This has been challenging to JT especially with returning to school, although he has a great support system with the administration and his school mates. WE THANK YOU!
Once Jax got through the quarantine of CDIFF, he was on the road to recovering from the chemo. He bounced back rather quickly (because he's tough as nails)! He seriously blows our minds with his stamina and cheerfulness.
I don't know if you all have noticed, but he just can't seem to wipe the smile from his face, even after pulling out his port access!!? Holy guacamole that was a real mess! His poor sensitive skin has really taken a toll from the pachyderm tape that covers the access needle and he can't stop picking and pulling at it.
Luckily while Buelo and Buela were in town Jax's levels (ANC, hemoglobin, and platelets) went up high enough that he got a surprise discharge. We got a 7 day reprieve to spend some time together out and about!
On August 10th he had a bone marrow biopsy, and the results were astounding. The chemo was super effective in fighting the Leukemia, giving us all an immense amount of hope for the rounds to come.
August 15th Jax was admitted for his second round of Chemo. All was looking good, until his port was "infiltrated". This means the needle dislodged inside his port, and the chemo was misrouted, creating a large bulbous lump under his skin at the port site. Rapid de-accessing and draining of the bulb was the fix, and the chemo started over again. Needless to say, accessing and de-accessing that port is anxiety-inducing, and Jaxon just really hates it. Poor guy, they've even started preceding this with adivan, which doesn't really do much at all.
That round ended on Friday Aug 20th, and since then he's been doing great. His port needle came out again, though, so the fluids from his IV created another boob/bulb followed by the dreaded de-access and re-access of the port. Jaxie threw a wondrous fit, crying so hard that he woke up covered in petechiae
. He also has a slightly elevated heart rate, so an EKG has been scheduled to check that there isn't fluid build-up around his ticker. Aside from this, his rebound this time has been quick and strong, and his blood levels are all looking really really good. If the EKG turns out ok, there's a chance he'll be discharged again until his 3rd round of chemo starts, so we'll cross our fingers and our toes!
Cynthia has been posted up at the hospital with Jaxon every night, keeping our tiny champ company and making sure he doesn't fall out of the bed or feel alone or scared. She's a trooper, even though the cabin fever is getting intense! Big Joe and Joe Thunder have spent loads of time there, too. Sleepovers and dance parties, snack time and toy-room visits abound.
The support of friends, family, coworkers, nurses, doctors, customers, heck even strangers, has been an incredible driving force. It's kept all of our spirits high and has given us immense amount of strength. Again, words cannot begin to describe our gratitude. FIST BUMPS ALL AROUND!