Posted on January 28, 2016
Posted on January 28, 2016Hey everyone!
This is the post I've been hoping to post for quite some time... THEY GOT THE CALL!!! Miles will be getting his liver transplant! What a glorious day!
Ryan had chemo this week, so unfortunately he won't be feeling up to going to the hospital (not a good place for him to be right after chemo either), so it'll be a little while before he can see Miles.
As as of right now it's looking like surgery for Miles will be tomorrow. I will keep everyone updated as I know information. In the mean time, please keep the surgeon, Miles as well as Ryan & Ashley in your thoughts and prayers! Thank you so much!
Posted on July 1, 2015
Posted on July 1, 2015Hi all!
It's been two months since I last updated, and yet again I was hoping that this update would be about Miles getting a liver transplant. That isn't the case yet, but we are hopeful that it will be anytime since he has been moved to number one regionally and number two nationally, which is fantastic news.
Over the course of the last couple months, Miles has had a handful of hospital stays for things like blood transfusions, issues with his PD catheter (used for the dialysis he gets over night), and a couple miscellaneous things. Overall he is great, in fact, if you were to look at him you would never guess he's in need of a liver and kidney transplant or that this little boy is fighting so much right now. To say he's a trooper is an understatement.
Miles will soon be turning one year old (August 10), which is hard to believe; it's flown by! Developmentally he is still right on track and is constantly doing or saying something new!
Ryan is continuing with chemo every other week. The good news is that his last CT scan didn't show any growth, so his doctor said he is stable which was a relief after seeing a little bit of growth on the CT scan prior to this one. Ryan has also been having a couple "good days" on the weeks he doesn't have chemo, which has been great for all of them. Ryan has been able to take Miles downtown several times for Hemo dialysis which is nice bonding time for the two of them (not quite the best place to be but at least they get time together) and nice for Ashley so she can get other things done like cleaning, grocery shopping, etc. They've also been able to go to the park by their house a couple of times, which is exactly what all of them need.
Unfortunately, Ryan was in a car accident about two months ago. Thankfully he was being watched over and was okay... The car on the other hand was totaled, but it was replaceable due to insurance (thank goodness).
Ashley is still the amazing lady she is, taking care of both Miles and Ryan and doing a phenomenal job at it, but I'm not sure how she does it all!
That is all I have to share right now, but as always, Ryan, Ashley, Miles and all of their family appreciate the continued support through thoughts, prayers, and monetary donations. We are constantly amazed at the love and support shown on a daily basis.
Posted on April 24, 2015
Posted on April 24, 2015I was hoping that my next update would've been several weeks ago with news about a liver transplant, but unfortunately that hasn't happened yet; so here's an update that Ashley posted on both Ryan and Miles (if you'd like to get more updates than what is posted on here, you can "like" Team Ryan on facebook. Ashley tries to update as much as possible.
Ryan's chemo was delayed a few weeks ago due to elevated liver function - his ALT, AST and bilirubin were too high for chemo. Dr. F wanted a scan done right away to make sure that his liver was still okay. The good news is that his liver still looks good. The scan did show that some of the lung nodules grew a small amount again. It'll take another scan before we know if there's an issue there or not.
While Ryan generally tolerates chemo relatively well, there is no question that each round of chemo gets harder on him. The day of chemo and the day after seem to be the worst for him, and then things get a little bit better, but he's still dealing with a good amount of annoying side effects each day. He is such a trooper and I love him for pushing through it all, one chemo round at a time.
Hemo is going so well with Miles. He is such a trooper and continues to smile and giggle. The only downside is that he has been having issues maintaining his hemoglobin so he averages about 1 blood transfusion each month... more than I'd like. His weight has plateaued a little bit. We've been stuck between 8.3-8.5 kilos for several weeks now. He goes through phases where he throws up some weeks more than others. Right now we're in a "pukey" phase so it is harder for him to gain weight. 10 kilos is the magic number for a kidney transplant.
And of course, we are still waiting on "the call" for his liver. It could come any day, so my phone is ALWAYS on me. Our bag is packed and we are ready. Well, we aren't ready but we're ready, you know? It's a means to an end.
Finally, to keep things interesting, Ryan got in a car accident last night as he was coming home from the hospital (Miles got admitted yesterday for a blood transfusion). He is fine, and the person in the other car is fine. Our car (Toyota Camry Hybrid), however, is likely totaled. Counting our blessings that he is okay but now we get to fit car shopping into the mix of craziness
Okay, I think that's enough of an update for now. Thank you for continuing your thoughts, prayers and encouragement for our family. We are thankful to have so many kind and wonderful people in our lives to help lighten our load and couldn't be more appreciative for all of the support.