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.