Day 188 - Another delay

The boys went to clinic today.  While his ANC was still really good (around 1400), his platelets are low (about 45).  So, we are delayed again until next week, and see if it will come back up on its own.  It's kind of a bummer, but we understand the delay.

We also talked with the radiologist today about the suggestion of doing radiation therapy.  The side effects and risks are pretty bad and we are leaning towards not doing it (especially compared to the benefits).  But, we are still going to talk to the neurologist and the oncologist again before we commit.  It was a rough conversation, but we are glad that we have such great resources for information.

So, we have a few more days of 'hanging out', so the boys are preparing for Halloween!  They even took a trip over to the Halloween store to get costume supplies!

Thank you all for the continued prayers and good thoughts!

Comments

  1. Lois HillOctober 26, 2017 at 9:10 PM

    DARN, we don't need any more delays, that just means longer until they get back here :( but as long as Ryan is healthy when he gets here it is ok! sounds like you do have more tough decisions.
    I just got back tonight from Whitefish, Missoula, Thompson Falls with my cousin from San Francisco -- visiting relatives that she has not seen in years. great fun at Justin's wedding last Saturday in Billings, more visiting with friends and family , then this 4 days, fantastic weather and good roads, what more can you ask for
    Prayers for no more delays, LUV U all

    ReplyDelete

Post a Comment

Popular posts from this blog

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

Day 499 - Movies with the grandparents

Image
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!
Read more

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