Posted on March 24, 2017
Posted on March 24, 2017Jace was discharged on Sunday, after his admission for the cdiff and a neutropenic fever. His counts finally came in and stayed up last Saturday, so we got to come home on Sunday. Since then, he's been in the best mood I've seen him in, in months. So happy, playful, silly and childlike...totally AWESOME! There is road construction going on around the corner from our house, and we've been able to go watch the big equipment work every day this week. Jace's happy place, for sure!
Yesterday, he had his clinic appointment, where they check labs to see if he needs any transfusions and just to keep a close eye on everything. He needed platelets, but otherwise his labs really looked great. Praise God for progress.
Monday, will be the first day of the first block of his maintenance phase of treatment. He will have a lumbar puncture, where they will inject chemo. He will also have iv chemo, and then an oral daily chemo, an oral weekly chemo and steroid weeks throughout, too. Maintenance is about 2 years long. Yes, you read that correctly.
Had Jace's treatment taken the "normal" route, he would already have a port in his chest. Since he had so many complications and so many inpatient stays and the list goes on, he still has a picc line in his arm. Hopefully, in the next month or so, we can get rid of the line and he can have a port put in. The line is a big infection risk, we have to maintain it at home and it limits what he can do with his right arm. Including baths. While a port isn't all sunshine and roses, (nothing in this journey is!) I feel like it will make Jace's life a little bit easier, and it will be safer for him. Before I'll let him get a port, his platelets requirements need to go down, as I don't want him having to endure port access 2-3 times a week for transfusions.
So, that's where we are at right now. We are very hopeful that as we get into maintenance we can spend a lot more time at home and less time at the hospital. There is definitely still the possibility of him becoming neutropenic, and fevers, the combination of those two will always get us admitted. But, I'm believing that it will be less and less as we settle into maintenance.
A lol of people never believed Jace would make it to the maintenance phase of treatment...but he did. He's our living, breathing, miracle child, and we are forever grateful. We were in a very different place a year ago, and even i struggle to believe that we went through what we did, that Jace overcame what he did. But he did. We all did. Believe it or not, I feel like we came out better, too. Praise God for that, and SO much more!
Posted on March 15, 2017
Posted on March 15, 2017Jace is doing well. He's feeling much better and has been in much better spirits, with a lot more energy! The c-diff is being pretty stubborn, but it is getting better. At this point we are just stuck here waiting for his counts to come up and stay up. They've been doing a bit of an up and down dance, so hopefully they just start trending solidly upward soon! As always, thank you all for the prayers and support. This would be a whole lot worse with out all of you. 💛
Posted on March 12, 2017
Posted on March 12, 2017Jace was admitted yesterday, due to neutropenic fevers and C-diff. Yuck. Yuck. YUCK. The good news is that his counts have come up enough and he's no longer neutropenic. This is great news for his safety! Bad news is that he's pretty miserable and still having fevers...nothing is showing up in cultures and he's not showing any other symptoms, so we think the fever is probably coming from the C-diff. The fever stayed down overnight and into this afternoon before going up again. He's very tired and has really slept most of the day. Poor guy just feels like junk. I'm hopeful that once the C-diff is under better control, the fevers will stop too.
As always, thank you for your support and prayers...we need it more than you know and we wish we could thank you all individually!