Ouchie

March 12, 2012

Tonight, around 9:00, Sadie woke up crying and saying "Ouchie!  Ouchie!"  So I went in and asked her where the ouchie was.  She pointed to her diaper.  I scooped her out of her crib and brought her out to change her diaper.  In the end, I couldn't find an ouchie.  I have no idea why she was crying.  But now she was wide awake and hungry.

So Sadie stayed up late and ate a bowl of cereal.  She was cute as ever.  I was worried, she wouldn't go back to sleep, but I was wrong.  When she was done, she climbed out of her chair, picked up her binkies and walked herself back into bed.

A big day.

March 10, 2012
Saturday, Evan was baptized and confirmed a member of The Church of Jesus Christ of Latter-day Saints.  Grandma and Grandpa Taylor and Uncle Russell came out for the big day.  Grandma Taylor spoke during the program about The Holy Ghost, and what a blessing it is to have Him as a constant companion.

The next day at church, I noticed Evan singing out the hymns.  He smiled at me and said, "I like singing the hymns now."  (He NEVER sang them before!)

I'm so proud of him, and happy for him.

Sadie's Haircut

Before:

After:

Isn't she adorable!  I think her blue eyes and big smile pop even more now. 

This past week has been a rough one.  Her mouth and throat sores have really been bothering her, so she hasn't been eating much.  Green smoothies, drinkable yogurts and vanilla ice cream is about it.  And she hasn't been sleeping well. 

The last two nights she's been waking up often screaming and gagging because there's hair in her mouth.  Because of the sores, I don't dare stick my finger in her mouth to get it out, and the blonde color makes them really hard to see.  It's been very frustrating.  I mean, who likes to have a mouthful of hair right?  She's been losing it more rapidly lately.  I find it all over her blankets and clothes and inside her hats.  At night, she still uses binkies to sleep.  I think what's been happening is her binkies would fall out, collect hair from her pillow and blankets and then when she put them back in, she wound up with a mouthful of hair.  Yuck!

So today, we bit the bullet.  We buzzed it all off.  (After three nights of restless sleep, both Sadie and I were very motivated and ready.)  "No more hair in your mouth!"  It went incredibly well.  Sadie had a great attitude.  I talked to the boys first...told them they needed to make it a happy and exciting thing, not a scarey or sad thing because Sadie would watch how they reacted.  They were so cute with her.  Afterwards, I bathed her and when she first saw herself in the mirror, she said, "I'm a baby!" and smiled.  Then she cuddled into my shoulder and I rocked her and sang Rock-a-bye Baby.  She loved it.  She is my baby. 

Happy Birthday Sadie Lady!

 1 month old

1 year old

2 years old

Sadie celebrated her 2nd birthday back at PEC hooked up to Methotrexate.  Kind of a bummer, but she didn't seem to mind.  She was surprised with a visit from family and loads of gifts.  Her favorite part was being sung to.  I can't count how many times I sang Happy Birthday to her that day.

It was a strange kind of dejavu packing the car with our suitcase and driving down to the hospital just Sadie and I.  We were admitted on the 30th of March.  Exactly two years ago, on March 30th, I packed the car with our suitcase and drove down to the hospital for a scheduled induction.  This time, Sadie was with me, sitting in her carseat, instead of in my tummy.  A lot of emotions and memories came back as we drove.

We are so happy Sadie is part of our family.  She is a complete joy to be around.



Day 1 of Interim Maintenance

Thursday, March 15th was Day 1 of Interim Maintenance.  It took Sadie 3 weeks to make counts, but that was expected.  Day one of this phase was important because it means 2 years from that day, Sadie will finish her chemotherapy.  No matter how many delays are inbetween treatments. 

Monday the 12th, her ANC was 500. By Wednesday, it was 1200!   So Thursday we began. We didn't have much notice, so it was a scramble to get things in order and make sure Evan and Andrew were cared for, but Thursday evening, Grandma Judy flew in and we could all breathe a sigh of relief. 

(Dave took this video on Day two at PEC.  It makes me smile.)

What I know about this phase: 

• It involves four, 3-4 day hospital stays
• We'll be admitted to Lucile Packard, then transported by ambulance (no sirens or anything) to another location where she'll stay and be monitored.
• She'll be given a high dose of Methotrexate.
• She'll be on fluids the entire time to flush it out.  They will monitor her urine to keep her Ph between 7 and 8, which is optimal for flushing Methotrexate out.  (We put cotton balls in her diapers and they check the Ph from those cotton balls every time we change it.)
• The Methotrexate takes 24 hours to go in.
• They check the level in her blood at hour 24, 42 and 48.  At hour 48, if the level is below 0.1, we can go home.

What I've learned about this phase:

• The PEC (Packard at El Camino) isn't so bad!  In fact, it's kind of fun!  They have an awesome play room, and an outside patio.  Sadie doesn't have to wear a mask, so we have more freedom to roam around.  The nurses are great, and it's much quieter and more relaxed there.
• The side effects are awful!  We were discharged on Sunday and Sadie was feeling great.  Then on Monday, mouth sores started showing up, then sores on her bum, then nausea.  This week has been rough.  It's oxycodine and zofran every 6 hours just so she'll eat and drink.  But she still doesn't have much of an appetite.  I'm struggling just to get fluids in her so she doesn't get dehydrated.   She's tired and wants to be held all the time.  The sores create a mucusy saliva in her mouth and throat.  It's the worst when she crys.  She gags on the mucus and throws it up. 
• As if that weren't cruel enough, Monday thru Thursday we have to crush a pill (Mercaptopruine) and give it to her.  She crys when anything goes down her throat so this is a miserable task.  And it's made worse by knowing it's poison.  More chemo is only going to make her feel worse, not better. 

All that being said, I think today is a turning point.  I think she's on the mend.  She doesn't gag anymore when she crys so I think the mucus is going away.  And she has more of an appetite. 

To sum it up:  4 days in the hospital, 4 days of awful side effects, then hopefully a week of recovery before we have to go back in.

(Note to self:  Sadie was also given an IT Methotrexate and Vincristine.  So she has a hoarse voice and I think her feet are getting floppy again.  She stumbles a lot.)

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!