Journal entry by Barbara Connors —
Hello again, after a long time again! Yet another long overdue update as we march on. Things are going well, Rhys is feeling really good and recovering beautifully, but let's see...everything in the proper order!
5-day chemo in December: Everything went as planned, munchkin was fairly bummed to be in the hospital at Christmas time, but oh my goodness the outpouring of gifts and things to do in the hospital for kids at Christmas time! It was amazing, truly, all through the generosity of different families and groups. The amazing generosity of our own family and friends was overwhelming, as well, as it came pouring in from our neighbors and her workplace, and Rhys's school also! I just don't have words enough to thank you all as much as you all deserve. Big or small, our holidays were overflowing with love and kindness from all of you. Thank you!
Christmas: As mentioned, amazing and wonderful, and holy moly the mountain of presents for Rhys! And he loved absolutely everything! Best of all, of course, we were all home for Christmas. :) That was Rhys's biggest wish, and he got it. My sister and her family came to visit as well from North Carolina and Rhys had an absolute ball with his cousins, though he was under the weather. He got a cold that hit him pretty hard, but it worried me and Seth more than him. We were so happy to see them, all the same! Rhys also reached his first post-surgery goal of walking with his walker without someone assisting his leg (to keep it from swinging too much and hurting). Big first step!
New Year: Everyone was tired but feeling good. Rhys was looking at getting back to school but feeling very intimidated by it. We've done a lot of talking and listening and working out mini-goals to work through it. One thing about Rhys...he doesn't do things half way, so trying to help him find some middle ground has always been a challenge. With a lot of work and help, he's learning to find it. A little bit. ;)
And on into January: Rhys had a 6-week post surgery checkup that went wonderfully. His surgeon was very pleased with his healing and mobility, so she wasn't worried about adding more physical therapy yet at all. Rhys himself is a great self-motivator, and he keeps himself moving and trying all on his own as it is. She said we'll reevaluate in a few months when he's done with chemo (yes, that day is coming!). We'll start talking about lengthening the prosthesis at that point, too, but there is no hurry for that.
Rhys did finally get back to school and it has done wonders for him. :) His new goal is to get to school at least one day a week unless we're in the hospital. I think we will be able to make it happen. A few things are combining to make it more feasible now, too. Over the last few months, Rhys's blood counts have started to take more time to come back up which has delayed the next chemo cycle. Usually it has been the red blood cells and platelets that have been lagging, not so much the white cells (which are the infection fighting cells and the ones we watch very critically when considering sending him into school where germs tend to, well, proliferate quite readily). This means that although his blood counts are too low for chemo, he still has some immune system power, so school can be a thing for him. :)
Lately now, his platelets have been lagging further behind, which has been delaying chemo a bit more. He's also had a couple of nosebleeds that have been pretty ugly, so we just have to watch for that. Unfortunately, the last time Rhys got platelets, he started having an allergic reaction, which apparently is not terribly uncommon, so he'll need a couple medicines before he gets platelets now. The doctor said that kids can start getting sensitive to blood products over time, and will usually show a sensitivity to platelets first before being sensitive to whole blood, so we'll see how things go. I'm all the more glad to be closer to the end of this journey, though. The chemo is catching up to him, I think. We've seen it with his blood counts slowing down in recovery, and he does get very tired sometimes, too. Not often, but when he does, it's pretty noticeable.
So here we are, with only three more cycles to go! We are *all* wearing thin at this point, but we are getting closer and closer to finished and finally starting to look toward what's next. :) Getting back to some sort of "regular" again. Hugs to you all!!!
5-day chemo in December: Everything went as planned, munchkin was fairly bummed to be in the hospital at Christmas time, but oh my goodness the outpouring of gifts and things to do in the hospital for kids at Christmas time! It was amazing, truly, all through the generosity of different families and groups. The amazing generosity of our own family and friends was overwhelming, as well, as it came pouring in from our neighbors and her workplace, and Rhys's school also! I just don't have words enough to thank you all as much as you all deserve. Big or small, our holidays were overflowing with love and kindness from all of you. Thank you!
Christmas: As mentioned, amazing and wonderful, and holy moly the mountain of presents for Rhys! And he loved absolutely everything! Best of all, of course, we were all home for Christmas. :) That was Rhys's biggest wish, and he got it. My sister and her family came to visit as well from North Carolina and Rhys had an absolute ball with his cousins, though he was under the weather. He got a cold that hit him pretty hard, but it worried me and Seth more than him. We were so happy to see them, all the same! Rhys also reached his first post-surgery goal of walking with his walker without someone assisting his leg (to keep it from swinging too much and hurting). Big first step!
New Year: Everyone was tired but feeling good. Rhys was looking at getting back to school but feeling very intimidated by it. We've done a lot of talking and listening and working out mini-goals to work through it. One thing about Rhys...he doesn't do things half way, so trying to help him find some middle ground has always been a challenge. With a lot of work and help, he's learning to find it. A little bit. ;)
And on into January: Rhys had a 6-week post surgery checkup that went wonderfully. His surgeon was very pleased with his healing and mobility, so she wasn't worried about adding more physical therapy yet at all. Rhys himself is a great self-motivator, and he keeps himself moving and trying all on his own as it is. She said we'll reevaluate in a few months when he's done with chemo (yes, that day is coming!). We'll start talking about lengthening the prosthesis at that point, too, but there is no hurry for that.
Rhys did finally get back to school and it has done wonders for him. :) His new goal is to get to school at least one day a week unless we're in the hospital. I think we will be able to make it happen. A few things are combining to make it more feasible now, too. Over the last few months, Rhys's blood counts have started to take more time to come back up which has delayed the next chemo cycle. Usually it has been the red blood cells and platelets that have been lagging, not so much the white cells (which are the infection fighting cells and the ones we watch very critically when considering sending him into school where germs tend to, well, proliferate quite readily). This means that although his blood counts are too low for chemo, he still has some immune system power, so school can be a thing for him. :)
Lately now, his platelets have been lagging further behind, which has been delaying chemo a bit more. He's also had a couple of nosebleeds that have been pretty ugly, so we just have to watch for that. Unfortunately, the last time Rhys got platelets, he started having an allergic reaction, which apparently is not terribly uncommon, so he'll need a couple medicines before he gets platelets now. The doctor said that kids can start getting sensitive to blood products over time, and will usually show a sensitivity to platelets first before being sensitive to whole blood, so we'll see how things go. I'm all the more glad to be closer to the end of this journey, though. The chemo is catching up to him, I think. We've seen it with his blood counts slowing down in recovery, and he does get very tired sometimes, too. Not often, but when he does, it's pretty noticeable.
So here we are, with only three more cycles to go! We are *all* wearing thin at this point, but we are getting closer and closer to finished and finally starting to look toward what's next. :) Getting back to some sort of "regular" again. Hugs to you all!!!
Did you know? A quick comment, no matter the situation (positive or negative), shows your support.