So, How's Ryan?

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...

Ryan headed up to the grandparents after lunch this afternoon for a day of movies and fun!  He stayed up way too late last night, and slept in this morning until about noon... spoiled kid, but I guess it is Saturday. He's feeling really good and it looks like his belly isn't causing any trouble.  And, with the new TPN, we don't have to do 2 infusions per day!  Woo hoo! Thank you all for the 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!

We headed into town for labs today to check on Ryan's magnesium level... it was up from 1.1 to 1.4, which is almost normal.  Apparently, the IV mag we have been giving him is helping!  In addition, the TPN will now have the magnesium, so we won't need to do an extra infusion.  All good! This evening, a special guest decided to walk by my bedroom window.  Not a great picture, but he was almost close enough to touch.  I love living here! Thank you all for the continued prayers and good thoughts!

After we finished up schoolwork today, Ryan wanted to go out into the backyard to dig up dinosaur bones... Unfortunately, it's been a while since we mowed the back lawn, and I was a bit concerned about snakes.  I didn't mean to worry him, but when I mentioned that he should keep an eye out, he decided he didn't want to outside after all... This prompted the guilty mom reaction, so I jumped on the lawn mower and mowed the back lawn, so he could dig for dinosaur bones without fear of snakes.  He followed me around the lawn for about an hour, making sure I was safe from the snakes as I mowed.  What an awesome kid! All is going good... Labs tomorrow (Thursday), to make sure our magnesium level is doing okay.  We also got a call from the home infusion center that makes our TPN, letting us know that they finally got a shipment of magnesium to put in his TPN, so we won't need a second daily infusion... woo hoo! Thank you all for the continued prayers and good thoughts...

Ryan woke up, took his shower and got started on his school work right away.  As you can see, he's even smiling.  I'm not sure what changed, but he isn't fighting me and he seems to be having a little fun... Who knew? I donated blood today at our blood drive.  It was pretty busy, so I hope we met our goal.  Afterwards, I had a great night with the girls at book club.  It's so nice to spend an evening with good friends (even though I didn't read the book!)  Hopefully, with all my free time now, I might be able to read the book for next time! Labs are scheduled for Thursday, and everything seems to be going good! Thank you all for the continued prayers and good thoughts!

While Kathryn, Connor and Allen had their first days at college today, Ryan worked really hard at his homeschool work.  Ryan has been struggling with his addition and subtraction facts, and we have been practicing every day.  Today, Patrick came up with a makeshift slide ruler, which allowed Ryan to visualize the math facts.  He was so happy that he did extra work!  Woo hoo!  We love homeschool days like this! We also were treated to a beautiful rainy day.  It may have even gotten a few snow flurries, but mostly just a lovely soft drizzle all day.  We had hot tea and apple cider and warm food and sweatshirts, which just makes us look forward to fall!  I'm sure it will be here before we know it! Thank you all for the continued prayers and good thoughts!

My mom (Grandma CC) recently bought and fixed up a small house here in Belt, and we had her housewarming party today.  So much fun to have her here!  She made sure to have enough seating for the whole family, and it was lovely!  And Ryan loved playing with her little dogs! Afterwards, he went up to the Grandparents house to spend the night and watch movies.  I think he knows that tomorrow's Monday, and if he is up there, he might be able to wake up and play before doing school work... Sly kid... All is going well with the extra Magnesium infusions, and he seems to be feeling really good! Both U of Montana and Montana State start classes tomorrow, so my 3 college kids are all getting a good night's rest, so they can have an amazing first day! Thank you all for the continued prayers and good thoughts!

Since we moved the boys to college this week, Ryan missed a day (actually 2 days) of school work during the week... Which means, in order to stick to my schedule, he needed to do school work on the weekend.  He was so not impressed.  It all started good, but spelling is not his favorite subject and he just did not want to do it.  No problem, this mean teacher just sat quietly until he realized that spending an hour complaining just meant an hour of complaining... he still needed to complete the work (and I added a bit extra just out of spite).  He promised that tomorrow would be better. He seems to be feeling good today.  While his belly is still draining, it doesn't seem to be as much of a problem.  And, the skies were clearer (not totally clear, but so much better than it has been the last few days), so he got to spend some time outside.  I even sat out and drank my tea this morning and enjoyed the fresh air. We started his IV magnesium this mo...

We brought Ryan into clinic today for labs and more magnesium.  His mag number came up a little bit (from 1.0 to 1.1), but not enough.  And, until the shortage is resolved, we will be giving him some extra IV magnesium for a few weeks.  But, because our pharmacy is so cool, we can give the IV at home with his regular TPN. The smoke is still causing some issues (mostly just allergy symptoms like itchy eyes and sniffling), so we are finding it better to keep Ryan home as much as possible.  He seems okay with it, as it means he gets to play video games and watch movies (only after his schoolwork is done!) Thank you all for the continued prayers and good thoughts!

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!

Ryan is fine. However, Allen and Connor both left today for college.  Allen went with his sister and a friend, so I wasn't even there. (I was a bit nervous about my 16 year old daughter driving the 3 hours home from Bozeman alone, but she said it was easy.)  Of course, Allen's a sophomore and he's almost 20 and I was good with that.  I went through the sobbing last year when I dropped him off and he's totally where he should be.   Patrick and Grandma CC and I dropped Connor off in Missoula.  Oh jeez... The day consisted of 'nope, I'm not crying.. I'm okay...sniff, sniff'.  No pictures because I couldn't remember to pull out my phone and take any. (By the way, his room is awesome... he's in a 3 room pod of 'single' rooms, with a common area with a fridge and a microwave... so cool!)   We got his room somewhat put together with his bedding and his keyboard and guitar and computer, then had lunch in town.  When we dropped him off for t...

Tomorrow will be a busy day for us.  Patrick and I are bringing Connor to U of Montana in Missoula.  At the same time, Kathryn will be helping Allen move back to Montana State in Bozeman.  Which means that tonight is the last time my four kids will all be under the same roof for a while.  Of course, I'm sure they will all come back for Thanksgiving, and then Christmas, but for now, I'm preparing to be missing my boys.  It's gone by too fast... Ryan spent a bit of time today fighting me to do his spelling, but in the end, he got all his work done.  He still hasn't really gotten the concept that he will be doing his schoolwork every day, no matter how much he complains.  It's always hard, but I'm standing my ground and he's beginning to understand.. I hope. Thank you all for the continued prayers and good thoughts!!

Ryan went up to the grandparents for dinner this evening.  He talked grandpa into letting him have more cayenne peppers with his shrimp.  Grandpa made him drink milk before and after each bite, but he thought it was awesome! His belly opened wide up today, which we were expecting.  We put the ostomy bag on last night, thank goodness, so it's not irritating his skin as much.  It's not draining a lot, but it is actively draining.  With his week-long chemo last week, we expect that it will take about a week or two to close back up.  He's learned to deal with it, so we're all good! Thank you all for the continued prayers and good thoughts!

Ryan spent most of the day with the grandparents, having fun and playing outside.  He did come home for dinner.  As tomorrow is the first day of school for Kathryn, I think it's only fitting that Ryan does his schoolwork as well.  He's not too thrilled about it, but now that summer is winding down, it's time to get back on a schedule.  Which means going to sleep before midnight and waking up in the morning.  Oh my goodness, do people actually do these things?? He's feeling good and his knee is healing up.  It's still pretty ugly, but much better than it was a few days ago.  As for his stomach, it's still leaking, but not much.  He is dealing with it, and it seems that this round of chemo didn't hit him too hard.  (Thank God!!) Thank you all for the continued prayers and good thoughts!!

Grandpa and Grandma got Ryan some Cayenne peppers, which Grandpa says are about 12 times hotter than a jalapeno pepper.  He thought they were great, but also had a glass of milk and declined a second bite.  Silly boy.   But I guess life is about new experiences! He's still pretty tired today, but felt good enough to stay with the grandparents after lunch.  His knee is healing up, although the bruise will probably be there for a while.  He did call me to apologize for not doing his schoolwork today, but he was laughing while he was saying it, so I'm guessing he's not really sorry.  No worries, we've been moving along nicely and I guess I can let him have a day off. Thank you all for the continued prayers and good thoughts!

We made it to Friday.  Not much of a shock, but always a good thing.  Ryan got his last dose of his IV chemo today, so we have a few weeks (I believe) until we have to do it again. His magnesium came up a bit with the IV mag we have been giving him this week, but not a whole lot (from 0.8 to 1.0).  It's technically still low, although he is chronically low so again, not much of a surprise.  I'm not sure if the doctors are going to want to do something about it next week, but until then, he doesn't seem to have any negative symptoms. We'll probably get labs in a week or two, just to keep an eye on things.  Otherwise, we can pretend to get back to a normal life?  I haven't a clue what that would look like.  The boys are heading to college this coming week, and Kathryn starts her senior year on Monday.  My, how the summer flew by... but doesn't it always? Thank you all for the continued prayers and good thoughts!

Day 4 of 5 for chemo this week went well.  Ryan's a bit tired, but says he's okay.  His belly is still leaking a bit, and causing just annoyance.  We should get labs tomorrow to see if the 4 doses of Magnesium is helping any.  (He was pretty low on Monday, so we've had daily magnesium with fluids during the chemo infusion). We'll see how tomorrow goes.  I'm looking forward to NOT going into Great Falls every day, but no complaining... It's so much better than going to Seattle... :)  We're also hoping for a little cooler weather, as we keep Ryan inside when it gets into the 90's here, and he really likes going out... Thank you all for the continued prayers and good thoughts!

We headed back into Great Falls today for day 3 of chemo.  He's still feeling okay, a bit tired, but not bad. Afterwards, we met the family at Fuddruckers for dinner, which was great.  Ryan loves playing his video games there, but had a small mis-step.  He ran over to me to ask for 'more money' so he could 'continue' the game.  I gave him another dollar, and he ran off... But, as he turned the corner, he slipped and fell.  There was another kid in the arcade area, so I'm not sure if Ryan ran into him or just stopped short, or just tripped.  But he took a tumble and landed on his knee.  And, to make it worse, he missed the time to continue his game, so he had to start back from the beginning. The trooper that he is, he didn't complain, but we did get some ice to help... One of the worst parts about having him on blood thinners is that when he falls, it looks really, really bad.  He says it doesn't really hurt... amazing. So, we have 2 mor...

Day 2 of chemo this week, and Ryan is doing fine.  His belly is bugging him, but it's manageable.  And he's tired... Went to sleep around 9pm last night and woke up around noon, but that's not unusual. His magnesium is low, so we are giving him extra magnesium before his chemo (along with some extra fluid).  The extra fluid is mostly just a precaution with the warmer days, extra fluid is always a good thing with this kid.  And the last thing we need him dealing with is dehydration.  Of course, the extra fluid means an extra hour or so in the infusion clinic, but we're fine with that.  Whatever is best for him. Thank you all for the continued prayers and good thoughts!