Happy Birthday Grandpa! We love you!
Yesterday, Matt and Carter headed to UCLA early in the morning. Matt applied the “magic cream” on Carter’s arms so he wouldn’t feel the poke for the blood draw (although he claims it still hurts). Unfortunately, Carter’s bruises on his arm hadn’t quite healed from the IV on Monday. This is the disadvantage of not having the central IV line in anymore. However, as long as the blood draws and poking get less frequent, we wouldn’t trade it. It’s like a lifestyle change for us to not have to worry about the daily line care anymore. Our nursing responsibilities are getting fewer as the weeks and months go by…it’s so nice. And Carter is enjoying his long overdue bubble baths!
UCLA called this afternoon with blood work results. All Carter’s liver numbers continue to look great! His AFP crept back up to 10.8, but it’s nothing alarming. They will continue to watch this number closely, and hopefully it will trend back down soon. And although they told us we don’t have to go back to UCLA for six weeks, we do have to continue to get blood work done every month for the first year post-transplant.
The best news was that we can begin weaning off the Prednisone (steroid)! So, we will reduce Carter’s dosage by one milliliter every month for the next four months until we are done! However, the doctor doesn’t think this alone will resolve Carter’s bone issues. He told Matt that Carter’s dosage is too low to make such an impact. Although, Carter’s oncologists also thought the Vincristine (chemo drug) dosage Carter received was too low to cause such havoc on his body, but look what damage it did. Every person’s body responds differently to these meds, especially in conjunction with numerous other medications. We are just glad to have fewer drugs pumping through his little body!
Carter is running around laughing and playing constantly. Nothing slows him down…except when I mention he should take it easy so we don’t break our leg AGAIN! He seems to take that sentence pretty seriously.
It’s crazy to think we have only been dealing with all of this for nine months. We have held our breath more, cried more (both happy and sad tears), sighed in relief more and learned more than we ever thought possible in such a short period of time. Hopefully, it will go down as the most intense period of our lives.
Hi Kara,
ReplyDeleteI'm a "blog friend" of yours through Heather Awalt Devany, and I've followed your family's journey for the wild ride it's been on. WOW! As soon as we found out about Carter's liver transplant, we officially changed our living will to include all three members of our family as organ donors. So happy to hear this latest great news!
Another family ours has a 2-year-old (my daughter's best friend) with a terminal illness called Spinal Muscular Atrophy (SMA): you can read her story at www.gwendolynstrong.com. Her parents have set up a nonprofit organization for SMA research and awareness and have already made leaps and bounds in both avenues. They are currently part of a contest sponsored by JP Morgan Chase Bank for $1,000,000 - all through voting on Facebook. If you (or your other readers) are Facebook members, please take the time to visit www.voteforsma.com (it's free and only takes two clicks). There's an informative video about SMA and I hope it touches a wide audience.
Just thought I'd reach out to another family who knows what it's like to be delivered tough news...and come out survivors! WOO HOO!!!
Love from our family,
Sarah Paskin