The End of Intensified Consolidation

Sadie is officially done with the Consolidation phase!

As expected, her counts are too low to start the next phase.  As the doctor's put it, "her marrow just takes a while to recover."  Right now her ANC is zero.  Wiped out, gone.  She has no ability to fight infection.  She needs to be at least 750 before we can begin Interim Maintenance.  I'm expecting we'll be delayed 3 weeks again.  Her ANC will probably hover around 2 or 3 hundred until week three, then it'll jump up to the thousands.  (That's my prediction.)

So for now we keep her safe, wash our hands a lot, and watch for fevers.  Oh, and enjoy the break from meds!

8 years old!

Happy Birthday Evan! 

We celebrated Evan's birthday in the morning so Dave could be there.  Later, I braved the germs at the Elementary school with Andrew and Sadie, and took cupcakes to his class.  (Sadie wore a mask to keep her safe.  I didn't realize how much attention her mask would attract, and ended up explaining as best I could to his class about Leukemia and the immune system.  Ha!)  Later on, Evan had his first piano lesson.
On the way home from his piano lesson, Evan said, "This is the best birthday ever.  I can sit in the front seat (of the car. He's legal now.) I'm getting baptized.  And I'm learning the piano!"  I think he feels really grown up, as he should.  8 years old is a big year!

Here's a clip from his Hansel and Gretel play.  I was so proud of him!  He did great!  (This song includes Hansel (Evan), Gretel, and their parents.)

After school, he said, "Mom, at least you could come to my play."  I think he's forgiven me for missing the Beyonce dance, which, by-the-way, I found out was a 'flash mob' so no one really knew about it.  And they are going to perform it again so parents can come.  Gosh, he didn't have to make me feel so rotten!  I guess I'm not the worst mom in the world after all.  Phew!

Evan is a great kid, with a great heart and a happy attitude.  We love you Evan!

Transfusion

Friday, Sadie and I were in for her transfusion.  Her hemoglobin was 6.4, and her platelets were 14, so she was given both.   

The clinic rooms were full, so we shared the recovery room with a 13 year old boy and his mom.  She told me a little bit about their experience.  Her son was about Sadie's age when he was diagnosed with A.L.L.  They finished his chemotherapy treatments, then he had two years of normal life before they discovered the Leukemia had come back.  Then they finished another 3 years of chemotherapy when the very last bone marrow aspirate revealed he had developed some bad myeloid cells as a side effect of one of the chemo drugs.  (Can you believe this?!)  Now he has just completed a bone marrow transplant.  His brother was the donor. 

As she was telling me their story, I was amazed at how upbeat and happy they both were.  Life on chemo was almost all he had known.  I was impressed with their cheerful attitudes.  She said, she tries to instill that in all her children.  You can't change it, so you might as well have a good attitude about it.  They laughed and teased and made plans for their week.  I like seeing that kind of stuff.  (And no, we're not worried about Sadie's story being similar.  It's rare.)

Back to Sadie....I thought she had energy before the transfusion, but Saturday morning I noticed the difference.  It was as if she'd had a cup of coffee with breakfast!  She was noisy, and silly, and energized!  It was hilarious!  I thought to myself, so this is what Sadie's like with a healthy dose of red blood cells!  She makes us all laugh.  Thank you whoever you are for donating your blood!!

Here she is eating dinner while receiving the platelets.

We love this girl!

Day 43 of Intensified Consolidation

We are done with the ARAC shots and the Mercap pills for now!  Sadie danced around the room singing no more pokes!

Yesterday, (day 43 of Intensified Consolidation), Sadie was given Pegaspargase shots in both legs, and Vincristine in her port.  Her hemoglobin is low.  As of Tuesday it was 7.1, which means she needs another blood transfusion.  This same thing happened in December.  She needs a transfusion, but Pegaspargase, and blood are both highly reactive, so they can't be given on the same day.  We'll be back in the clinic on Friday for her transfusion.  I'm a little worried about how low her hemoglobin will get by Friday.  She already looks very pale, but seems to be feeling fine.  For someone who's hemoglobin is low enough to need a transfusion, she sure has energy! 

Here's the pictures Dave took in the hospital yesterday:

 Happy Valentine's Day!

All the nurses that came in to give Sadie her shots gave her suckers. Notice 3 suckers sticking out of her mouth... Spoon full of sugar?

Evan's Bad Day

I write a lot about Sadie and how she's doing, but Evan had a really bad day today.

The first thing Evan said to me when he came home from school was, "Mom, why didn't you come?!  Today was the Beyonce dance!"

Huh??? 
The entire 2nd grade has been learning and rehearsing the Beyonce routine "Let's Move" for weeks now.  Evan's even practiced it at home with Andrew.  And apparently today was the big performance.  I remember Evan mentioning that this Thursday they were going to do the dance, but there was no mention of "parents are invited," or "it's at 1:30," or "I want you to come."  However, the look on his face told enough.  I felt scolded.  I felt bad because Andrew, Sadie and I had missed out on a very cool event, and I felt bad because it meant so much to Evan. 

Sometimes I feel like we're struggling to keep Sadie's illness from overtaking every aspect of our lives.  It affects all of us.  I miss volunteering in the classroom.  I missed Evan's holiday party and gingerbread village display.  I feel like I've missed a lot to keep Sadie healthy.  If there's one place that scares me to take Sadie, it's the elementary school.  And I can't bring myself to leave her with a babysitter.  (I wonder when I will.)

I whole heartedly apologized to Evan, and I will do my best to make it up to him. Next week he is starring as Hansel in their class play of "Hansel and Gretel Eat Right."  I wouldn't miss that for anything!

The other reason Evan had a bad day, was because of this:

Before

 

After

 

Wednesday night we found lice in Evan's locks of hair.  He has been growing it out for months ...his choice, not mine.  And there were genuine tears of sorrow when I told him we were buzzing his head.  So today, he went to school lice free, (after special shampoo treatments, and a head inspection by the school nurse of course), but some of the kids at school teased him about the new look.  I don't think they were saying anything particularly cruel, but because Evan was so torn up about it already, the attention, the chuckles, and the comments just made his pain even worse.

So today, I win the award for the worst-mom-ever.  I no-showed to his awesome school event, and I gave him a haircut he despises. 

Sigh.  Tomorrow will be better.

P.S.  Sadie is doing great!  Back on track with treatments, and keeping the side-effects in check.  She still has plenty of hair, and I don't think she even looks like a cancer patient!

You never quite get used to it.

We are back to the grind of treatment.

Dave and Sadie spent today at the hospital.  (Actually, they are still there right now.)  Dave sent out this email and photo.  It pretty much sums it up.