Saylor Voris's Journal
Written Apr 17, 2014 10:24pmSaylor is still doing Great according to the Doctors... We just came from CHOC, and they are Happy with what they see. She is still in a mild GVHD and on the Heavy Steroids, but they think that she may start the weening off period late next week, which would be awesome. She is really uncomfortable due to the Bloating side effects of the steroids. In fact, the other day we met a couple people on the streets, and they didn't even recognize her with her new hair style.
Overall, "It's all Good!.. and Saylor wanted to say Happy Easter to all her friends and supporters.... This Easter, as all Easter's, is a great time of Hope and Faith.
Love you ALL
Written Mar 31, 2014 1:35am
Saylor is doing well at home still... DAY45 post transplant. Still trying to get adjusted with Sam playing Ball again, her meds schedule, the clinic visits, and Saylor’s daily tutoring… Wow… It’s justso great to see her talking to her friends again. Her face lights up whenever she sees afriend for the first time… (They still have to keep their distance, but weallow them to talk and HANG in the back yard).
Just starting to deal with all the Bills that have been piling up for months (we did not have the time or energy for this while she was in treatment)… Thank goodness that we pay “a lot” extra for a Premium PPO insurance Plan. (AND NO, for some of you who asked me last week, Our City and most Cities,do not give Firemen fully paid medical) Just to give you a little idea of what the cost is: so far CHOC has billed our insurance over 1.4million dollars worth of charges so far!!! CRAZY right… Just thought I would motivate others to get a good plan… We were really lucky I did not switch to the cheaper plan last year with major out of pocket CAPs… We have a few families here at CHOC going to Multiple Hospitals for treatment due to the fine print on their plans… SO know what you got…
We are not out of the Woods by any means, and Saylor has yet to be pulled off any of the Meds that are keeping the GVHD in check, but TODAY was a Great day!! And we are enjoying the moments we have right here and right now! Thank You again for all the love and support…
The at home Transition
Written Mar 23, 2014 9:48pmSaylor has been very good at home... The doctors are already very pleased with her heart Echo, and say her heart should compensate for any of the minor damage done by the Chemo. Her GVHD is still being kept in check by the steroids and the cyclosporine...
The real text will be when we start to wean her off the steroids. We are hoping /praying for her marrow cells to attach, mature, and take over all her "host" cells.
She is So happy to be home... She has already seen Sam play Baseball, had a friend over the house, and we just finished a family BBQ to welcome the "New" Saylor and say goodbye to uncle Steve for now... He is heading out to Indonesia again.
Everyone has been real good about keeping their distance from her, and we really appreciate that... If she had it her way she would HUG you all...
Her very restricted "processed, frozen food" diet and inability to be in the sun, makes it hard for a Fresh fruit eating, San Clemente family to get through our day without making her mad, but she has been a real trooper.
Also, the list of thank you's are so deep that we could never get to you all, but I will try to thank a few every now and then... Right now, I can't thank my good friend and neighbor John Roberts enough, who has from the start of this whole mess started cutting my grass every week without hesitation. I tried to tell him to stop, but he told me, "I'm not stopping until Saylor is home and your whole family is back together, John"...
Thank you John, and all of you who didn't wait to figure out what to do to help... You just did it... Rose/Allison and all of the Saylor's soldiers did so many great things.
And if you ever want to know how hard this has been, and still is, talk to the 4 people that really carried us through the toughest of times.... Tracey, Jolynn, Brian, and Greg...
We love you all....