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.