Day 20 - All is stable for the moment...

Ryan's 4th Birthday, January 2008
Nothing really happened today.  Patrick and Ryan woke up late, and Ryan was pretty tired most of the day.   So Ryan slept while Patrick headed over to the apartment to do laundry.  Labs all look good and tomorrow we get our last dose of Chemo for this phase

 Our 'day 29' will be on 5/26, so that will be the day they take his bone marrow sample to see what his 'minimal residual disease' or MRD.  This counts how much leukemia is still in his system.  This number will determine how the next phase will progress.  They do a genetic analysis to look for the leukemia genes, and let us know within about 24 hours.

Since Patrick was doing laundry, we didn't get a picture, so I found this one from Ryan's 4th birthday.  (I'm getting together Allen's senior slide show, so it's lots of trips down memory lane)...I love how young the kids look!

My mom surprised me with a visit today, which was awesome!  She came up from New Mexico to see Allen's graduation, and give me a hug.  I'm finishing up cleaning my classroom and getting it ready for the summer.

Thank you all for your thoughts and prayers...

-------------------------------------------------------------
(All blood cultures are coming back negative)
Blasts - (not checking this every day anymore)
ANC - 0
Hematocrit - 22.4
Hemoglobin - 7.8
RBC - 2.54
WBC - < 0.2
Creatine - 0.3
Glucose - 89
Platelets - 30
Bilirubin (Direct) - 1.1
Bilirubin (Indirect) - 1.5
Bilirubin (Total) - 2.6
ALT - 55
Description of lab numbers, in layman's terms:
Blasts - roughly the number of leukemia cells found in the sample.  We want this to be 0.
ANC -  This tells us how well his body can fight off normal infections... We want this to be greater than 500..  Normal would be greater than 1500.
Hematocrit/Hemoglobin (H&H)  - This is a number of how much blood is in his system.  His normal range is 28-32/9-11.  The numbers are linked, so they are usually referenced together.  We will transfuse him more Red Blood Cells if he gets below 21/7.0.  (this is the blood you donate at blood drives, and we expect to use lots of it)
RBC (Red Blood Cells) - The number of Red Blood Cells in his body.  Normal is 4 - 5.5.  He has always been low, so we are happy with numbers around 2.5.  This number will go down with chemo.
WBC (White Blood Cells) - This tells us how many white blood cells he has (in thousands).  Normal is between 4.5 and 10.  We expect this to remain low, between 1.5 and 2.5 for a while.
Creatine - This is a good number to make sure the kidneys are working.  Normal range is between .5 and 1.2... If this gets higher, it means his kidneys are struggling.
Glucose - This number tells us that the pancreas is working.  Some kids struggle with diabetes as a result of the meds.  We want to see this number remain above 60 and below 150.
Lymphocytes - Non-cancerous T-Cells and B-Cells.  Normal would be around 1000, so we expect this number to be low.  This is the number of cells that will kill off bad cells like viruses.
Platelets - This is the number of platelets in the blood, which helps with clotting.  Normal is greater than 150.  We will transfuse more platelets if he gets lower than 30.
Co-Ags (PT,APTT) - These numbers tell us how fast he clots.
Bilirubin (Direct/Indirect/Total) - Bilirubin tells us how well the liver is working.  Normally, these numbers are less than 1, which is good.  However, when the liver starts to be under stress, they may go up.  Total Bilirubin is the Conjugated (Direct) + Unconjugated (Indirect).  The doctors said these numbers might come up, as his liver is trying to process all the meds we are giving him.
ALT/AST - these are liver numbers, letting us know how much stress the liver is under.  Normal range is between 10-50.

Comments

  1. Lois HillMay 18, 2017 at 10:33 PM

    Glad your mom came to visit, always nice to have mom with you!
    nice that you have one more thing off your plate--your school is over and class room done!!
    CU Saturday
    you are all still in my prayers LUV U

    ReplyDelete
  2. AnonymousMay 19, 2017 at 11:08 AM

    That pic is adorable! That's exactly how I remember them at that age...beautiful. (Aunt Jen)

    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