Day 193 - Clinic and platelets

The boys went to clinic today.  Ryan was still very low on platelets (about 30).  The doctors decided to go ahead and give him platelets, to pull his numbers up.  And then they gave him one of the two chemo drugs... They decided to skip the second (the one that hits the platelet count).

They also had a really good conversation with the doctor about the radiology treatment.  Patrick explained that we don't want to do the radiology treatment, as the side effects are just too risky, especially considering everything that Ryan has gone through.  She was so understanding, it was awesome.  She asked if we would be interested in alternative options that do not include radiation, and she wanted to do more research on her side to see what we can do.  One of her suggestions would mean an extra month or so out in Seattle, and would include more chemo but NO radiation.  We said that we would like to see anything that did not involve radiation to his brain.  Patrick said it made him feel so much better!  The doctor said that she trusted our opinions, and would respect any decisions we made...

The boys now have about a week before the next set of labs, and about 2 weeks before the next dose of chemo.   I'm so grateful for all your advice!

Thank you all for your prayers and good thoughts!!

Comments

  1. Lois HillOctober 31, 2017 at 9:11 PM

    Know these decisions are tough to make, but certainly see why you did. So good to see you yesterday, and glad Ann hung out until she could donate. The gal asked me I had been busy that morning--she had seen me running around!! My pulse was a "little" high ????
    OMG look at all the hot sauce by Ryan's plate!!
    Prayers for all of you. 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