We are moving!

I've been trying to catch up on the blog.  Sometimes I write posts, but then don't publish them right away, so you'll probably see a few out-of-order events.  But here's a current update:

We are moving!

My last day of work is June 7th.  We will be out of the apartments by June 17th.  For the past 3 years we have lived onsite and managed an apartment complex.  The job was an answer to prayers.  It allowed us to stay out of debt and let Dave continue working on his startup company.  It allowed us to stay in a ward that we love and be in a great school district.

But it's come at a price.  It's been tough, not just on me, but on Andrew, and on our relationship.  I hope I'll remember the heartache and struggles I felt.  How desperately I wanted to just be a mother and be able to put my kids first.  How I wanted to be able to read a book to Andrew without the doorbell interupting or the phone ringing.  There were times that Andrew would throw a fit and scream for my attention right on cue....every time I answered the phone.  It was embarassing and frustrating, but it also left me guilt striken.  My poor emotionally neglected child.  Too often he came second, or was dragged around places for work, or was "shooshed" while I talked to someone for work.

Andrew was 2 and still in diapers when we moved into the apartments.  Now he's 5 and starting kindergarten in the fall.  

Andrew 2009

Andrew 2012

I read thru my journal a couple nights back and came across an entry I wrote last spring in 2011.  It must have been after a particularly busy and emotionally challenging day for both Andrew and I.  I promised myself I would quit that summer.  I promised I would do it for Andrew.  So I would have at least one year with him before he started school.  I broke that promise and I could just kick myself.  Was it worth it?  Well, we paid off both cars.  We put aside some money for a house.  But, No, it wasn't worth it.  If I could go back, I would move last summer.

Evan cries at the thought of moving.  Dave doesn't understand why I'm so desperate to be done.   But Andrew and I......we know.   Andrew is just as excited as I am.   He's been there and seen it all.  When I told him I was quiting my job.  He threw both arms up in the air, did a little jump, and shouted "Yeah!"  He'll finally have his mother's attention.   My heart just aches for the time I've lost with him.  Boy do I love that kid, and I have a lot of making up to do.  

A memory

During Interim Maintenance Sadie struggled with awful mucusitis and mouth sores.  She couldn't eat, or swallow so the saliva just streamed out.  She would gag on mucus when she cried.  She was miserable and would spend a few days mostly in her bed with her blankie and binkies or on my lap watching a show.

These were not fun days.  I just wanted to make the pain go away, and nothing seemed to work.  During the third round, it got the worst.  Oxycodine wasn't even taking the pain away, and she was losing weight quickly because she wouldn't eat. 

During these days, she still needed to take her Mercaptopurine chemo which is a pill form that we crush up, mix in some water and give to her orally with a syringe.  She has to take it on an empty stomach, so 2 hours after eating and then she can't eat anything for 30 minutes afterwards. And it has to be given in the evening. We've found what works best is to put her to bed with her bottle, wait 2 hours, then wake her up to give her this medicine and she goes right back to sleep. 

On one particularly rough day, I had to wake her up to give her this medicine.  Dave was still at work.  It had been a long and emotionally exhausting day.  I woke Sadie up and held her in my arms.  She immediately knew what was coming and kicked and screamed and started hitting and fighting.  She did NOT want to take her medicine.  "I know Sadie, but you have to take it."  "Just swallow it then you can go back to sleep."  I was holding it together amongst her abuse and fighting until I just couldn't take it anymore.  I broke down.  I started crying.  "Sadie, I don't want to give this to you either."  I just sobbed.  All I wanted to do was make it better and this medicine was only going to poison her further.  How much could a little body take?

Sweet little Sadie noticed I was crying.  She stopped hitting and screaming and looked at me.  Then she wiped away my tears with her hand and said, "It's okay mommy, it's okay.  Here I can do it."  And she took the medicine and squirted it in her mouth.

Funny, here I was being comforted by the cancer patient.  She is such a sweetheart.

The end of Interim Maintenance

Friday, May 4, 2012

Had an amazing week last week.  My mom flew in to help with Sadie, and ended up taking care of me instead.  I went shopping.  I went out to lunch with Dave.  I shopped and went out to lunch with a friend.  I took naps.  My mom cooked and washed the dishes.  It was a refreshing week off, and I was completely spoiled.  Thank you Mom! 

Interim Maintenance was much worse than I expected.  I had worried about the hospital stays and what to do with Andrew and Evan.  That turned out to be rather managable.  The side effects from the high doses of Methotrexate and the Vincristine turned out to be our biggest challenge. 
We expected Sadie's last round of high dose methotrexate to really knock her out, but to our surprise, Sadie escaped without any mouth sores!  She was neutropenic again.  Her ANC was 500.  And our biggest concern became her limping and stumbling.

Vincristine has been rough on her.  "Toxic" as the doctors put it.  It makes her hoarse, she gets constipated so we have to keep her on lots of Miralax, and she's been progressively getting a worse "foot drop."  Her right foot is worse than her left.  She can't pick up her foot, so to compensate, she has a "high gate" or in other words, bends her knee more to pick up her foot so she doesn't trip.  Lately, she's been walking on her toes to compensate. 

As a result, and to prevent it from getting worse, they have decreased her dose of Vincristine and are sending us to Physical Therapy once a week for the next 8 weeks.  Today was her first day.  I think she loved it!  It was play time and the therapist was super friendly and cute with her.  I think they will be good friends.  Next week they will give her some heel supports to put in her shoe and we've been given a list of exercises to do at home.  It was encouraging though to hear that this wasn't permanent.  It can be corrected.

So now we are done with "Interim Maintenance!"  Which was not nearly as low-key as I expected.  In fact, it was much, much worse.  And we're on to "Delayed Intensification."  We expect this to be rough too.  We expect her to be neutropenic most of the time, and have been warned to expect a hospital stay at some point for a fever. 

At the end of every phase, I breathe a sigh of relief to know we are done with those challenges!  And then a new set comes.

Round two at PEC

April 11, 2012

Sadie made counts already!  No delays!  We think it might have something to do with holding the Septra antibiotics, but they are also running a genetic test to see if there's a different reason her marrow is normally so slow to recover.

Today her ANC was 1300, so we head back into PEC this Friday for another high dose of Methotrexate.

Saturday is Sadie's birthday.  She'll turn two years old in the hospital.  Kind of a bummer, but I think we can make it fun.  Andrew blew out his 5 year old candles in the hospital with Sadie back in November.

Luckily, my mom, dad, and youngest brother Russell are coming to visit for Spring break, so we'll have help with the boys.  And I can't wait to see them and hopefully get out and about with them.

I can't believe we're going back in already, and I'm praying the side effects won't be so awful this time around.

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!