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.

January 28th

I love living in the Bay area especially when the weather is like this in January!

To take advantage of the super nice weather, and the time off from Chemo, we headed out to the beach today.  As usual, I didn't get a single photo with me in it, but here's what the others were doing. 

Soaking up a healthy dose of sunshine!

Still waiting

We are still waiting for Sadie's ANC to go up before we can continue with her treatments.  We were told it was normal to be delayed a week, even two.  But it's been three weeks now.  Her doctor left a message saying on Wednesday we would discuss what to do.  Hmmmmm.  I'm not sure what to think or expect.  I'm having flashbacks to the hospital.  Maybe it just takes Sadie's ANC a long time to recover, and then one day, poof! it will be there! 

On a positive side, it's been super nice to have Sadie feeling well.  And her WBC, hemoglobin and platelets have been slowly going up.

A typical clinic visit

It starts with Lidocaine cream on her port site.  Cover it up with press and seal, and we're good to go!  Sadie has a back pack with everything we need for her visits.  Snacks, paper, pencils, water, binkies, mask, our "family handbook", etc.  When we arrive, we're supposed to valet park, so we pull up to the front and head on in.  The hospital is under construction right now because their expanding, so Sadie is supposed to wear a mask while outside and near the doors.  Sometimes she does great, and other times I just can't keep it on her.  It's really annoying and I need to reconfigure the mask so it will fit better.

Then on to the clinic.  We check in and she's given her ankle bracelets and allergy band.  Then we wait.  Sometimes we wait for around an hour, other times we're in in 20 minutes.  Labs are first.  We're taken into the lab draw area where they access her port.  This is the worst part for Sadie, but we're told it will get better.  I don't think it hurts her much, but it really makes her nervous.  She's so tough though and she gets a lollipop at the end that magically makes it all better.  They draw what they need, then heplock her and we're back into the waiting room for the doctors' visit.

While we wait, there's usually a movie playing (but it doesn't interest Sadie), and books (she's not really interested), there's some computer games (that are usually occupied), and sometimes she'll sit and color.  But most of the waiting involves Sadie wandering around the room and climbing on the chairs. Today she fell backwards off the chair she was sitting in and hit her head.  Oh boy!  The room completely came alive!  Sadie was screaming.  One receptionist rushed over.  The other receptionist grabbed the phone and asked if I wanted a nurse.  Then two nurses rushed into the room to look her over.  They asked what her platelets were, but I didn't know.  They asked questions and in the end, it was much ado about nothing.  But I learned what they watch for and what's important.  Because she had cried right away, she didn't lose consciousness, and her platelets were fine (they checked for me), there was so concern.  She was fine, but I was kind of embarrassed about all the attention.  Another mother in the room told me the same thing happened to her once. 

Next we're taken into the clinic where someone will weigh her, measure her, take her temperature and blood pressure.  Then we're given a room to wait in for the doctor.  The oncologist will look her over, listen to her heart and lungs, look in her mouth and ask questions.  We discuss her lab results and the plan for the upcoming week.  And they answer my questions.  Today I felt so grateful for the specific doctors Sadie's been assigned to.  They're a perfect fit for me, and Sadie adores them.  Today I was given a much needed pep talk about how to keep Sadie safe, but still have a life.  They made me feel better and it gave me more courage to get out and go places.  It was just what I needed to hear. Lately I've been struggling with whether I'm making the right decisions and really wanting to get out, go places, and see people.  They explained in more detail why a fever is so scarey and why we would be sent to the ER.  They explained that it's not the viruses that are scarey, but the bacteria.  But viruses can cause fevers and will land us in the ER as a safeguard.  I am really thankful for two wonderful doctors that I can lean on and who can give us support and advice.  (I say "doctors" because there's the attending oncologist and then there's the fellow.  The fellow has been with us since our very first visit to the ER after Sadie was diagnosed.  She's great!)

Next we schedule our upcoming visits and we're on our way home!  We usually stop and see the trains on the way out and Sadie usually falls asleep in the car on the way home.  Today she slept four hours after we got home!  I think clinic visits wear her out.

Here's a photo that has nothing to do with the post:

Sadie and Andrew play so well together despite their age difference.  I don't know what we're going to do when Andrew starts Kindergarten this fall!

Still no chemo

We went back to the clinic today.  Still waiting for Sadie's ANC to go up.  Today she was around 400.  No chemo again this week.   We'll keep going back Mondays and Wednesdays until her ANC is at least 750, then we'll start on Chemo again.  But while we are waiting, we are enjoying the fact that Sadie feels great!  She's about as normal as we've seen her in a long while.

On a fun note:  Have you seen this video?  It's Sadie's absolute favorite!  She loves dancing to it and I've tried to catch her on film, but she's becoming camera shy.  You'll just have to picture her mimicking Fiest's every move down to the bow at the end.  It's priceless!