First Day of Maintenance

(Dave and Sadie, last year November 18, 2011)

Today was Sadie’s first day of Maintenance.  We spent the morning at Lucile Packard Children’s Hospital where she received a lumbar puncture and Vincristine chemo thru her port.

Each night before a procedure like this, I pray that angels will surround Sadie and guide the doctors and nurses hands; that everything will go well.  Today as I wandered the halls pushing an empty stroller while I waited for Sadie to come out of the surgical room, I got a little emotional.  I was overwhelmed with the feeling that this is a place where miracles happen.  There are angels that wander these halls and fill the rooms; that surround the children and their families.  

As excited as I am to one day put all this behind me, I can honestly say that I will miss this place.  I will miss the feeling that is there, that words can’t describe.  It’s a place of miracles and angels and I am grateful to have felt their presence.  

2012

More of the same…

Evan, continues to amaze with his artistic prowess.  He excels in school, and is friends with all.  He loves baseball, and can’t wait for the season to begin.  Andrew follows his brother (and his brother’s friends) everywhere in an attempt to grow up too fast.  He can often be seen climbing the hallway walls and doorways (literally), or bouncing off the furniture.  Andrew is our parkour champ in the making.  Sadie, she is loves books, and toys, and her brothers.  She demands the attention of all around her.  She is our princess, and has come to expect to be treated as such.  Angela remains the devoted mother, and plays the role of the wife of an entrepreneur well.  There are many nights it is certain she feels like a single mother of 3, but values and looks for the moments when the whole family is together.  As for Dave, very little has changed.  Work fills the lion’s share of the days and weeks, but Dave remains the forever optimist looking forward to brighter days yet to come where less time at work will be required.

A year of healing…

While 2011 ended with a tragedy when we learned of our precious Sadie’s leukemia diagnosis, 2012 has been a year of healing.  Sadie has endured indescribable treatments of all kinds.  She has demonstrated a level of perseverance to be envied by both young and old.  Our home, for the past year, has been adorned with Hand Sanitizer at every corner.  We have developed a new appreciation for hand washing, and have been able to, for the most part, stave off illness.  Generally we try to live a bit healthier, doing the little things and eating a bit better.  As for Sadie, while it was never in any doubt for any of us… the prognosis looks fantastic!  After a year of pretty intense treatment, the next year’s treatment will be extremely mild by comparison.  We look forward to restoring normalcy to our lives once again.

The Move…

Hello, Danville, Goodbye Menlo Park.  This year we needed desperately to upgrade our accommodations.  We moved into a very comfortable home in Danville, CA, and we love our new community, the kid’s new school, our new neighbors, and our new church family members.  The kids (and their parents) LOVE the back yard, and have put it to full use.  However, we miss deeply our Menlo Park friends and neighbors.  To all of our Valparaiso ward members, we are so grateful for the out pouring of love and support given to our family.  We gained a sound understanding of what it meant for others to “mourn with those that mourn… and comfort those that stand in need of comfort”.  For those that gave so much, we will be forever grateful.  It is our sincerest desire that we will be able to repay to others the many kindnesses that we have been shown.

Merry Christmas!

A Chemo Update

We have 7 out of 8 treatments done in Delayed Intensification 2!  Wahoo!  We are done with ARAC shots and have one treatment left until Sadie can start to recover and get ready for Maintenance.  I can hardly wait!

With all that I'm looking forward too, these next few weeks could be pretty scary   We're nearing the tail end of a really brutal phase and the chemo is doing it's job.  Tonight Sadie is going to sleep with an ANC of 700, Hemoglobin of 7.9 and platelets of 23.  It feels like I have a little porcelain doll sleeping in the other room.  Low platelets scare me the most.  Low red blood cells don't slow her down much: she sleeps a little more and yells a little more, but other than that...she's jumps, and runs, and climbs as usual.  But she's got bruises all over her body, and it took two bandaids and a big wad of gauze to stop her port from bleeding after de-accessing her.  Worst of all, a head bonk could send her to the ER.

I'm a little paranoid right now.

But we're getting there!  I actually had a conversation today with Sadie's oncologist about taking out her port during maintenance.  That's exciting!
 

Thanksgiving

Our Thanksgiving Feast 2012

We have so much to be thankful for this year...every year really....but I feel especially grateful for where we are today compared to where we were last year.

2011 Dave and I spent Thanksgiving at Lucile Packard with Sadie.  I think of our room that became home, the hum of the machines and fans, the hourly vital signs, the smell, the voices and footsteps outside the door, the couch bed and crib.  I think of the wonderful friends who shared their feasts with us so we didn't have to eat hospital food.  I think of the wonderful doctors and nurses who care for Sadie and have completely earned our trust. I think of the other families who were our neighbors at the hospital during that time, and who were and are experiencing heartache for their child.  I think of the many generous friends and family who have shared their time, money and kind thoughts with us to ease our burdens.

I expect every Thanksgiving, I'll look back at November 2011 and realize how truly blessed our family is.

Andrew Turned 6

Andrew's my spider killer.  My peacemaker.  My cuddler.  He's definately the most patient, and observant.  The most giving and generous.  He loves to work and he loves to be silly.  He's the perfect middle child....a fantastic little brother and the best big brother.  He's a joy to have and watch and learn from.

(P.S.  Last year we celebrated Andrew's birthday in the hospital with Sadie newly diagnosed.  This year, he got two parties...one with family, and one with friends.)

A Phone Conversation and A New Nurse

Today in the car, Sadie brought along her toy cell phone.  The conversation went something like this:
To Andrew:  "Shhhh.  Andrew, I'm on the phone."
To the pretend person on the phone:  "No, we're not going to the park because my numbers aren't up.  Ummm.  We're not going to Adele's house.  We're going to... 'where we going mom?'"

Also this morning, Sadie had labs drawn.  A nurse comes to our house once or twice a week to draw labs.  Right now we are adjusting to a new nurse. This is the fourth nurse we've had since we moved.  Blah.  We loved Marcy, our last nurse, (or "Nursey" as Sadie calls her.)  I'm sure we'll love Penny too after a while, but I really do hate changing nurses.  It takes a while to get used to each other.  I always feel the pressure of being Sadie's voice.  Telling them don't do that, reminding them to wash their hands and don't touch that stuff without your gloves on.  Eeek.  You'd think all this would come natural to them, but I guess not all nurses are used to neutropenia.  I'm so used to the hospital nurses who are ultra sterile so I expect the same from our in-home nurses.  Sigh.  Eventually we'll get used to each other.  Anyway, this morning this new nurse missed Sadie's port.  Of course it hurt Sadie and then because in the process and fluster of it all, things became unsterile so she had to do everything over again.  It's not the first time this has happened, but it's always a little tramatic for Sadie...and me....and the nurse.  I do like Penny, it just takes time to learn each other's ways.

On a happier note...we took Sadie to the park a while back to snap some photos.  Isn't she a doll?

In Case Anyone Still Checks the Blog

We are doing really well.  Sadie finished another phase, and is onto the next.  I have so many pictures and posts, but not enough hours to put them all down.  I will work on it.

But for now, we are doing great!

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. 

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!

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!

Quick update

No Chemo Tomorrow.
Sadie is doing well.  She's eating well, she's drinking well, she's feeling well.  She went in on Monday for labs, and she should be going in tomorrow for chemo, but her numbers are too low.  They want her ANC to be at least 750 before they'll give her this next dose of chemo.  This means she gets a week off!  On Monday her ANC was 300 and we expect it will be back up by next week.  Her Chemo days switched from Thursdays to Wednesdays.  This works a little better with our schedule because on Mondays, Wednesdays, and Fridays, Andrew is in preschool.  Tomorrow we'll be in for a clinic visit only.

Happy New Year!

Here's four reasons why I'm the luckiest woman alive :

Evan: 

He is loyal and brave with almost superhero instincts.  If he sees someone who needs help...he doesn't hesitate.  In a lot of ways, I wish I could be more like him.  Last year in school, Evan was sent to the principals office because he was in a fight.  I wish you could read the letter from the principal.  Honestly, it seemed like a formality.  I'm not ashamed of his actions.  Some other boys were picking on one of his friends, so Evan stepped in to his rescue.  Evan knows not to fight, but he won't hesitate to help a friend.  As punishment, he had to write a letter explaining what he would do differently next time. 

He rolls with the punches and can laugh at his mistakes.  He's honest.  One time while I was showing a vacant apartment, Evan and Andrew were outside playing.  Evan came up to me in tears trying to tell me something.  He had peed on the garbage bins!  (I hope my boss doesn't read this blog!)  He knew after he'd done it that it was a bad choice, and he knew he needed to tell me even though I'd be mad.  I wasn't mad.  I could see his predicament.  He needed to go, there wasn't a bathroom and he didn't want to disturb me while working.  I was disgusted, but I was proud he told me the truth, I just wish it wasn't in front of potential tenants!  We talked later about what might have been a better choice than peeing on the garbage cans.  I know if I ask Evan a question, he'll give me the truth.

Andrew:

He's determined.  He's perceptive.  He's sensitive and sweet.  He prefers his family over friends.  As much of a challenge as it can be right now, when I need to leave him with someone or drop him off at preschool, I try to picture him as a teenager and remind myself that someday he might not want me around anymore, and that will break my heart. 

He's strong willed. He likes to work hard.  His memory is incredible!  And he's incredibly giving!  For his birthday this year he was flipping through a toy magazine and actually picking out things that Evan and Sadie would like!  He told me he was going to ask for these for his birthday and then give them to Evan and Sadie.

Sadie:

She is a joy.  She's the happiest little human I have ever met.  She's polite.  The other day she was watching a Barney episode.  Evan was playing his guitar...loudly.  Sadie very sweetly walked over to him and tapped him on the shoulder.  She put her face right in his and very sweetly in her own way with hand motions and pointing, asked him to be quiet because she was watching Barney.  We all got a kick out of it. 

She's patient.  She submits to her pokes and medicines without understanding, but with trust in us.  She is brave.  She loves people, and people adore her.  On Thursday when we went in to receive a blood transfusion, I realized what a fan base she has!  The minute we walked in it was all "Hi Sadie!" and smiles and waves from doctors, nurses, cleaning staff.  And Sadie loved it.  Her nurse said they were all fighting over who got to be Sadie's nurse today.  And on the way out she was giving hugs, and waves and "byes" to them all.  She is so easy to love! 

Dave:

I don't want to embarass Dave too much, but I will say that I love this guy!  So much of what I adore in our kids personalities come from him.  He's a rock.  (And I'm not just talking about his body!)   He's brave and tough, yet sweet and caring.  He's brilliant, yet funny.  It's hard to find a man like him and I'm lucky he's mine!  We've had a crazy 9 years, and this year will be no exception!  But I'm so glad I get to go thru it with Dave by my side.

Ardenwood

If I could raise my family anywhere, no limitations, it would be here.  I know.  Keep dreaming!  But I love this place! 

Yesterday, we took a trip to Ardenwood Farm.  Everytime I come here, I feel life slow down.  Dave points out how much work it would be to own something like this.  He's totally right.  But work doesn't scare me, and it's good for the boys.  Plus, I'm only dreaming.   I do think it would be really fun to raise kids on a farm, especially in this area where the weather's great and there's still lots of other places to go.  It's only a dream.

Sadie's favorite animal was the sheep.  The first time we went here, she was terrified of them.  "All done, all done!"  She kept saying everytime they baaaa'd.   This time she wanted to pet them and feed them.  "Here sheepey!" as she carried around straw.  It was great to be outdoors, away from the crowds and hustle and bustle and together.

Mom, Dad, I can explain.....

Just look at their faces!  All three of them.