Day 38 - First Clinic Visit

Ryan didn't really want pictures today...
We had our first clinic visit today.  Patrick and Ryan got to meet the outpatient (long term) doctors and nurses that will be taking care of him for the next 8-10 months.  (of course, I missed it, since I am back home in Great Falls).  Patrick said it went great and he really enjoyed meeting everyone!  The doctors said that Ryan is recovering amazingly from the Induction Phase, and they are totally impressed with him.  We will start the 'Consolidation Phase' tomorrow with the spinal tap, and more chemo, so I will restart my blog title days with Day 1.  This phase should last about 8 weeks, or 56 days.

They gave him some compression socks for the swelling in his legs.  The overall thought it that the swelling is a side effect of one of his chemo drugs.  It tends to hit the liver, which in turn, can no longer produce enough albumin, which leads to fluid moving to places where it shouldn't.  They also decreased his fluid intake for the next few days, to see if that also helps.  Ryan said the socks felt really good and he looks much better to me!

The doctors also explained the 'fever' issue.  They expect that some of the meds will cause him to have a fever.  However, we still need to bring him in for cultures, just in case.  They said the plan, in case of a fever, is to call the fellow, bring him into the ER (assuming it's after hours, which is almost always is), draw cultures and labs, and if his ANC is high enough, send him back home on Tylenol.  It's a little strange for us, but also makes it much less painful.  And, it helps to know that the fevers are normal, and not something we did wrong.

Grandma and Grandpa made it out there this afternoon, which made everyone pretty happy.  And, since his ANC was over 3000, they even went out to dinner, in a restaurant!  Ryan was a little pooped at the end of the day, but all is going well!  We have our Spinal Tap scheduled for tomorrow morning (in Interventional Radiology, they are taking no chances this time).  Otherwise, nothing else is scheduled.  We hope for a nice calm day!

Thank you all for your good thoughts and prayers...


----------------------------------

ANC - 3800 (totally normal!)
Platelets - 80
Hemacrit - 26.7
Hemoglobin - 9.0
RBC - 3.01
WBC - 5.0
Creatine - 0.2
Bilirubin (total) - 1.2
ALT - 87

Comments

  1. Lois HillJune 6, 2017 at 7:36 AM

    The grandparents are there --- that will make that young man happy. you can see it in all three faces! and the ANC is up, what an amazing young man! and they got to go OUT to dinner, bet he was tired after all that!! Prayers are working, again :) see what the next chapter in that treatment brings. LUV U all

    ReplyDelete

Post a Comment

Popular posts from this blog

Day 500 - wow...

Image
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...
Read more

Day 490 - A bit smoky

Image
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!
Read more

Day 498 - Visit to Ft. Benton

Image
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!
Read more