The park

Today I dared take Sadie to the park.  I don't take her often, so this was a pretty big deal.  Her counts are up, and she's had a good break from chemo, so I thought this was as good a time as ever.

I'm sure the other mom's think I'm crazy the way I hover around her, but who cares as long as I keep her from falling.  I set her down at the top of a slide and let her go down, then she climbs back up the stairs to me and we do it again.  Today, Sadie took a quick detour though.  She went down the slide, then decided she wanted to go explore a pond in the park.  The pond is drained, there's no water, but it's pretty steep with rocks at the top and concrete at the bottom.  In just the time it took me to hurry down the slide to help her, she had tumbled in. 

I didn't actually see the fall, but one second she was there, and the next second I looked, she wasn't.  All I saw were 3 older boys with eyes wide open staring at the bottom of this pond area.

My heart just about jumped out of my chest.  I ran over to find her sprawled out at the bottom crying.  (I hate those images.  Ones that never leave your mind.)  I hopped down and scooped her up and looked her over.  She had three big goose eggs on the side of her head.  I don't know how she fell or where she hit, but her head looks awful. 

Needless to say, I rushed her home to put ice on it and called the doctors.  I think she's okay, but we ordered another set of labs to be drawn so we know where her platelets are. 

Poor little Sadie's reaction is what I wanted to document. 
When I told her we were going home:  "No Mommy!  I'm okay!  It'll go away!  No! No!" 

And of course she fought me about the ice.  Afterwards, begging me to take her back to the park: "I'm sorry mommy.  I won't do it again.  I promise I won't fall." 

I tried to explain that she wasn't in trouble and it was just an accident.  I told her it scares me when she falls and I just need to keep her safe.  Her response made me laugh:  "I know mom, but you can't!"  That's the truth.

Let me Introduce you to....

Our nanny!

Dave's youngest sister Emily is staying with us this summer to help out.  It's been AWESOME!

Delayed Intensification

Another round is done....well almost.

I was told Delayed Instensification would be rough.  And it definately kept us on our toes.  We had a few scares and more than one unexpected trip to the ER or clinic.  What I thought would be 8 weeks of once a week chemo days, turned out to be, well, a lot more than that.

Week One: (May 16) Began with an IT Methotrexate, Vincristine, Doxorubicin, and twice daily doses of the steroid Dexamethasone.  (I know I've said it before, but I really detest the steroids!  Yep, even more than I dislike the chemo!)  Two days later we were back in for her PEG shots.  Everything was going great.  Sadie was beginning to get ornery and hungry, but it was managable.  The steroids taste awful, but she was swallowing them, and had a sticker chart that counted down the doses until she was done.

Week Two:  (May 23) Vincristine and Doxorubicin.  No more steroids!  I've learned coming off steroids cold turkey can be miserable...but Sadie handled it like a champ.  Just one day of achiness and three days later she was her cheerful normal self again.  At this point, we even took a mini vacation up to Camp Okizu for an incredible weekend of family fun. (I'll post more on that later.)

Week Three: (May 30th) Doxorubicin, (Held the Vincristine because of her footdrop and voice), and she was back on the steroids.  Ackkk!  This time, she WOULD NOT take the liquid form.  One evening, I tried three times to get her to take the dose.  The first time, she spit it out.  The second time, I pulled in her brothers as cheerleaders and we succeeded in getting her to swallow it... followed by gagging and throwing it and dinner up all over my bed.  I cleaned up the mess and mustered up the courage to try one more time.  Poor Sadie was in tears.  I got it in her mouth, but she just spit it out all over me and her.  Three loads of laundry later, I gave up.  The next day I called the clinic and they ordered a pill form that she could swallow.  Yeah!  We were all so much happier.  "No more yucky kind!"  Who would have thought a two year old could learn to swallow pills!  But their small enough and Sadie is AWESOME enough that it worked like a charm!

We had a scare during week three.  Sadie was complaining that her bottom hurt.  She would tiptoe around the house saying "Ouchie" and she spent a lot of time in bed.  (This instigated the take-down of her crib so she could get in and out easily.)  I called the doctor and because her ANC was 400, she needed to come in right away.  This meant the ER...blah.  Dave was out of town for work, so I dropped the boys off at a friends house and Sadie and I headed in.  To make a long story short....5 hours later we ruled out a urinary tract infection. and concluded that she must have mucusitis inside her digestive track where we can't see. We are familiar with Mucusitis...awful stuff, but thank goodness it wasn't a UTI! This meant we got to go home! We were told once her numbers (her ANC) started to go up, the mucusitis should clear up. Home at 11:15 pm, thank goodness for my wonderful friend Kelli who had brought the boys home and put them to bed! I fed Sadie some food, gave her her meds and got some sleep. 

Week Four:  (June 6) The scares continued.  This was a week off of chemo and steroids so Sadie's numbers could recover.  I was so excited, and fully expected a great week!  But the effects and side effects of the medicines didn't give us a break.  This time coming off steroids cold turkey was a nightmare.  By 11:30 Friday morning, Sadie's entire body was tensed up like one enormous cramp and she was shaking in pain. She was screaming, and frozen, and couldn't move.  It was scarey. Evan was out of school and I had stepped out to get the laundry. When I came back, Sadie was screaming in pain, and Evan was in tears. I had already tried oxycodine and it wasn't helping so I called the doctor.   Back to the hospital.  (Luckily it was not the ER this time!) They rushed us right into a bed and gave her a dose of Morphine to calm her down and relax her. Then they did a physical exam, ran some labs and concluded it must be the steroid withdrawals.   Next time we will taper the doses so she doesn't go off them so abruptly.   She was given another dose of Morphine, and sent home....happy and comfortable.   Good news...she was no longer neutorphenic..her ANC was 1000.

Then on Sunday, Dave and I noticed Sadie's speech was slurred.  We could not get her to talk clearly.  (Okay, so she's two and doesn't talk very clearly normally, but this was weird...it was as if she were talking without a tongue.)  As the day went on we also noticed her left eye was droopy.  Time to call the doctor again.  Yep, possible neurological problems so we were sent back in to the ER.  Dave took her this time.  They did an exam and a CT scan to rule out a stroke.  Everything looked fine, and 5 hours later, she was sent home and we've been watching for other signs ever since....but haven't seen any... thank goodness!

Week Five:  (June 13) IT Methotrexate, Cyclophosphamide, 4 ARAC shots per week, and a daily pill called Thioguanine.  Dave took her in for this day of chemo and I threw together a swim party for Evan and some friends as a farewell party.  This was the week we moved.  I am still so overwhelmed with the kindness and help that so many people showed us.  I had friends that helped pack boxes.  Friends that took the boys and friends that tended Sadie.  Friends that brought us food and friends that loaded the truck.  I just want to take each and every one of those friends with me to our new neighborhood!  It is a miracle that we moved and carried off Sadie's treatments without a hitch. 

Week Six: (June 20)  IT Methotrexate, 4 ARAC shots per week, and the daily Thioguanine pill.  Dave was out of town so I took Sadie in for her IT that morning.  The night before, they had called saying her labs came back and she would need a blood transfusion as well.  Her hemoglobin was 7.2. I wasn't sure what to do with the boys.  A new friend Cindy took them bright and early in the morning (they put her under anesthesia for I.T.'s, so it was an early morning) fully expecting to have them all day.  Thank you Cindy!  This was my first time coming from Danville, and the drive was long....I underestimated traffic and showed up an hour late to the appointment. Ugh.  A tini miracle though....they checked her blood again and found her hemoglobin was back up to 8.2!  She would not need a transfusion!  I was so relieved to be going home earlier than I expected and that this chemo day was over!  A success to have pulled it off. 

Week Seven: (June 26) Vincristine and Pegasapargase.  Monday night, after Week 6's chemo, I got a call from the oncologist saying Sadie's hemoglobin was back down and super low.  It was 6.3.  Did I notice any signs?  How was she feeling?  One thing about Sadie, is that she doesn't let much slow her down.  I had no idea she was so low!!  She was pale of course...but I definately can't tell a difference in paleness from an 8.2 hemoglobin to a 6.3 hemoglobin.  And she was up and playing around just like she always does.  So Tuesday, Sadie was scheduled for her chemo, but instead would be having a transfusion.  I took her in Tuesday and she was given a unit of red blood cells and a unit of platelets.  By Tuesday morning she had dropped from 6.3 to 5.2!  Yikes!  And she was bruising easily.  Transfusions are a long day.  I think we were there 12 hours.  Cassie watched the boys part of the time, and Dave came home early to watch them the other part. 

Wednesday, we were back in for her Chemo.  (Peg and blood can't be given on the same day.)  This time, I decided to take the boys with me.  They were such troopers.  I let them watch movies and play computer games on my laptop.  It wasn't ideal, and it took 5 hours because for some reason it took a while for pharmacy to make the chemo and then they have to monitor her for 2 hours afterwards.  Blah...not a fun day, but we survived.  And I like to think it was good for the boys to see what goes on when I take Sadie in.

Week 8:  (July 3) Just Vincristine.  Should have been an easy week, except Sadie was constipated.  I took her in for her chemo, but because she hadn't pooped in 3 days, they gave her a laxative instead and sent us home.  Two days later, we came back for the chemo.

Just when I thought this phase was done, and the "scares" were over, Sadie came down with a fever.  Yesterday, July 7th, she hadn't been eating well and after her afternoon nap, she was super cranky.  Just before we were supposed to go to a barbeque at a friends house, I felt like I should check her temperature.  100.3.  An hour later it was 101.6.  We called the oncologist and were sent to the nearest ER for some tests.  This time both Dave and I took her in while Will and Cassie watched the boys....again.  (Boy do I owe Cassie big time!)  8 hours later, Dave and Sadie were transported to Lucile Packard in an ambulance and admitted.  Her ANC was 30 last night.  So we are waiting for the fever to go away and the ANC to be over 500 (no longer neutropenic) before we can go home.  Reminds me of when she was first admitted.  Right now, Dave went home to take the boys to church and I am catching up on the blog while Sadie naps. 


We have done WAY too many trips to the hospital this phase and I hope, hope, hope, the next months will be less busy!  Say a little prayer for Sadie.

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.