A place for us to keep track of this new chapter in our medical adventure with Ryan... As if his transplant wasn't enough...
Day 423 - Happy Fathers Day!
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We all got up around noon to have Fathers Day breakfast, complete with waffles and bacon and sausage. Then, I got very achy and tired, so I went back to sleep... all day. Kathryn had a bit of a flu, so I probably got it from her.
Good news is that Ryan is totally fine, and adjusting to life at home. Labs tomorrow, so I really hope I'm feeling better.
Thank you for the continued prayers and good thoughts!
sounds like a great Father's Day, except you not feeling good in the afternoon--hope you are feeling better now. Prayers are still being answered for Ryan :) :) LUV U all
Today - Sept, 2018 So, this is day 500. 500 days since we found out Ryan had Leukemia. It's been a very strange year and a half, and you all have no idea how much I appreciate your support and your prayers. For the last 500 days, I have posted an update every evening. I have tried to keep my posts positive (sometimes more for me than for anyone reading them). There are things that I have not talked about, perhaps because putting those things into writing will make them possible. Mostly, I have avoided any writing that implies that there is any alternative to things working out. When we were first diagnosed with Leukemia, our doctors came in to give us 'the talk'. For anyone who has gone through this, you know about 'the talk'. Since Ryan had a small bowel and liver transplant, odds were that Ryan would not survive. We knew this. However, Ryan is an amazing kid, always defying the odds. May, 2017 (first month...
We've mostly recovered from our emotional day yesterday, only to wake up to a very smoky day. We decided that Ryan could plant his flowers another day, as he probably shouldn't be outside too much on days like today. So, it was a video game inside kind of day (after our school work was finished, of course!) We got a call from our Great Falls oncologist, who spoke to the Seattle team about Ryan's low magnesium numbers. They want us to get labs tomorrow, and probably a bolus of magnesium to get him through the weekend. Depending on his numbers, we might come in next week as well until the TPN can get this right composition of mag (there is a shortage right now). Hopefully, these fires can get under control and the air quality can get back to our beautiful Montana weather, so we can enjoy the outside again... Thank you so much for your continued prayers and good thoughts!
I spent the day in Fort Benton with my mom and her friend... It was nice to spend the day walking around the fort and the museums, and just enjoy the beautiful day. Ryan stayed home with Patrick, so it was kind of a break day for him as well! He woke up late and didn't have to worry about his school work all day... But, he will make up for the missing work tomorrow... One of the side benefits of homeschooling! His belly has completely closed up, now that he's been without the IV chemo for 2 weeks or so. It looks great and hopefully will stay that way for a while. We don't have another spinal tap until October, and I don't think we have the week long IV chemo for another few weeks. Just enjoying feeling good! Thank you all for the prayers and good thoughts!
sounds like a great Father's Day, except you not feeling good in the afternoon--hope you are feeling better now.
ReplyDeletePrayers are still being answered for Ryan :) :)
LUV U all