In a nut shell

Sadie takes a lot of oral meds.  She takes the following at 8AM and again at 8PM: Decadron (steriods), Zantac (heartburn), Amlodipine (blood pressure), Colace (stool softener), Miralax (laxative), Septra (preventative antibiotic on F/St/Su only)

She's given Ceptaz (antibiotic) every 8 hours thru her picc-line.  They will give her this until she's no longer Neutropenic and can go home.  Neutropenia is when you have an abnormally low white blood cell count which serves as the primary defense against infection.  Sadie is neutropenic which means her ability to fight an infection is very diminished, hence the antibiotics and the long hospital stay.

She is given Vincristine (Chemo) every Thursday thru her picc-line.  (Other forms are given on certain numbered days, but not weekly)

Her vitals are taken every four hours.  Blood pressure, temperature, oxygen saturation, heart rate.

Blood is drawn from her picc-line every day or every other day at 4AM depending on the doctor's orders.  Dave and I are given a copy of her labs every morning and watch the numbers along with everyone else.

Doctors are monitoring her bowl movements (the Chemo causes constipation), her fluid intake and outflow, her blood pressure, and of course her lab work. 

When her hemoglobin drops below 8 she is given a unit of blood.  When her platelets drop below 10, she is given platelets.  We want her white blood cells to drop and then we want the healty ones to multiply enough for us to go home.

She has a team of experts watching over her:  The attending Oncologist, a fellow, a resident, a med student, all the WONDERFUL nurses.  She has a nutritionist, a physical therapist, a Child Life specialist who is wonderful at making sure she's happy and still feels like a kid.  We have a social worker, two "teachers" who are putting me through a course of what to do at home.  And then there are the volunteers, Joe who visits once or twice a week, the library staff who bring her dvds, and other parents also staying in the hospital.  All who help lift our spirits and reassure us we are in good hands.

Other than that it's a matter of keeping her germ free and entertained, which is not an easy task.  Our favorite game is to head up to the third floor for hide-and-seek with Daddy.  We go for lots of walks and she he has been given so many gifts and toys to play with...she is wonderfully spoiled!

Happy Thanksgiving

Today I feel happy, and blessed, and overwhelmingly grateful!  We have wonderful friends who brought us home cookin' for Thanksgiving (thanks you guys!) and Sadie is doing well.  I'm grateful for friends and family.  I'm grateful for our hospital room that allows both Dave and I to stay 24/7.  I'm grateful Evan and Andrew are happy and healthy.  I'm grateful for prayers and faith and my relationship with our Savior. 

I've cried more than usual the past few days, but today I'm happy.  It's a rollercoaster.  Caring for Sadie wears on me after a while.  She just isn't herself and I miss her hugs and smiles. She's such a grump, a very demanding grump!  But I love her to pieces and I know the grumpiness is all because of these nasty steriods. 

Dr. Jeng who admitted us to LPCH is our attending Oncologist this week.  It was great to see his familiar face.  As we chatted, he told the nurse I was "the calmest mother in the world."  Most of the time I am happy and I contribute it all to our faith, the prayers of those around us, and to our trust in the Lord's plan.  But as "calm" as I normally am, once in a while I let myself cry.  I've been missing my cheerful, happy, playful Sadie. 

But today, I feel happy!  I went home tonight and did a little more prepping of our house for bringing her home.  (The date is still undetermined because we are waiting for her ANC to go up. The higher this number, the better her immune system.  Right now she is in the 30s, and they want her to be in the 500s before we go home.)  But she's off any and all machines.  Everything we are doing now are things we will be able to do as an outpatient or from home when we get there.  I am ready!  And in my heart, I feel like that day will be very soon. 

It will be a good day.

Here's a photo, just because I love photos more than my words.

Day 13 of Treatments

Yesterday Sadie smiled a lot and actually enjoyed playing!  She seemed a little more like the Sadie we know.
This morning, her hemoglobin was at 6.9 so she is getting another unit of blood.  Her platelets are also pretty low, they are watching her and we expect she will be given a unit of platelets tomorrow before her procedure.

Because of the holiday, she is getting her "day of Chemo" on Wednesday instead of Thursday.  She will be put under again for the Chemo into her spinal fluid and another type of chemo into her IV.  Everytime we do this, she can't eat anything after midnight and drink anything after 4 AM.  It's so hard!  The steriods make her ravenous!  We're hoping for an early time slot, but that will be difficult since everyone is having their procedures tomorrow instead of Thursday.
Scratch that!  The oncologist fellow just came back in.  No Lumbar Puncture tomorrow!  They were confused...or just wanted to make me worry for a minute.  Either way, I'm much happier now!  (Because they did not find Leukemia cells in her initial spinal fluid check, she does not need Chemo into her Spinal fluid on day 15.)  So no procedure tomorrow!  Just the Chemo thru her IV.  That's a relief!

Sadie's team of doctors just came by.  They let us know, just for the sake of keeping us informed, that they are still seeing some Leukemia cells in her blood tests.  They have been talking to "the experts" (i.e. Dr. Dahl) and it doesn't seem to put her in the "high risk" category yet.  What's most important is that on day 28, when they do the bone marrow aspirate, that they find NO Leukemia cells. 

Please keep praying for Sadie's body to be strong in fighting and overcoming these bad cells!  I'm thankful for the doctors who keep us informed so we know what to pray for.  And I know prayer works!  At this time especially it's what I rely on and trust in the most.

Sadie's Hair

Today Sadie and I were having a picnic on a blanket spread over our hospital room floor, and I noticed a clump of her hair on the ground.  It was a small clump, and probably not related to the chemo (it's still pretty early into treatments for her hair to start falling out), but it scared me.  So, I prompty got a pair of scissors and a ziplock baggy and snipped off a few of her curls to keep.

I don't know why the hair thing is so scarey.  It's really a harmless side effect when compared to others.  But it means her cells are dyeing and it changes her appearance, and that scares me.

(I wonder what it will look like when it grows back.) 

Right now we do a lot of waiting.  We're trying not to be bored.  Sadie is handling the treatments really well.  The doctors say we won't know for sure how effective the Chemo has been until they do another bone marrow biopsy, and they will do that around December 7th. 

We're also still waiting for some genetic test results which will help determine her risk and the treatment plan after this Induction period. 

Evan and Andrew flew out to Montana tonight with Grandma Judy.  They'll be there until after Thanksgiving.  I'm very excited for them!  Grandma Judy makes the best pies!  Charity and all her boys will be there, and I hear they've been getting lots of snow!  Oh, I wish we could be there too!

Thank you Grandma Judy for making all these changes so much easier!  Here they are going into the airport:

My Hero

Check out her blog here.  I can't even tell you what an inspiration she has been to me especially during the last week.  Love you Cherisse!  So glad little Lucy is back home, even though I will miss our hospital night chats.  :)

Daddy knows best!

The IT went well this morning.  She was starving when she came out of anesthesia and completely devoured her breakfast.  Then fell fast asleep.  When she woke back up, she wasn't quite as energetic.  She wanted to rest more and didn't have much of an appetite.  I think she may have felt a little nauseous which Chemo can do.  While she was under, they changed the dressing on her picc-line. 

There was a little scare in the afternoon, early evening.  The nurses couldn't get her picc-line to flush or draw blood.  They thought there was a clot somewhere and so were putting a medication into the lines to break down the clot.  Still didn't work.  She needed to get her second type of Chemo thru her IV around 5 pm, and the picc-line still wasn't working.  I was so worried they were going to have to poke her again and put in another IV!

In enters Dave to save the day!  "Home" from work!  Dave noticed the picc-line catheters weren't sticking out as far as they used to be.  They called in a "Picc-team" nurse to take a look.  Sure enough!  Daddy was right!  She adjusted the length, pulled it out a little more and wa-la, we're back in business!  Relief!

Now she's had her second type of Chemo for the day, and is sleeping soundly.  Day 8 was a big day, and I'm glad it's over.  We learned one thing...sometimes the parents know best. 

Tomorrow morning she'll have to take 5 different oral medications along with the IV antibiotics!  She hates the orals!  Poor girl. But we spoil her when we can.

Good news: She won't need any more Chemo for a week.  So now it's just wait and watch her numbers from the labs to see how she's responding. 

Oh, I find this interesting....after Sadie has a Chemo treatment, we have to wear gloves when changing her diapers for the next 48 hours.  Makes me think about how powerful this poisin really is.  But it's saving our baby's life.

Tomorrow - Day 8 of Treatment

Sadie's getting two different forms of Chemo tomorrow.  One is intrathecal (or into the spinal fluid).  The other is an IV push (goes into her IV).

She has to be put under to do the intrathecal. 
It makes me anxious and nervous to see how her body will respond.  Last time she came out of anesthesia, we had a hard time keeping her Oxygen levels up.   

As for the Chemo and Steriods, the side effects we've seen so far are:

• constipation
• bloated abdomin
• change in her temperment.  (She's really cranky and demanding.  It's kind of cute!) 
• she sounds hoarse
• a huge appetite (also very cute!) 

Today we put on her shoes and she walked around the halls.  (We have a video of it, but it's upside down.  Oops!)  It's so good to see her acting a little more "normal."

We're praying that tomorrows procedure will go well and that her little body can handle the chemo.  We love our little angel!

P.S.  Is it weird that I've moved into a hospital room?  Today I caught myself calling it "home."

Sadie's story

A lot of you have heard our sad news.  Our little Sadie was diagnosed with Leukemia (Accute Lymphoblastic Leukemia) on November 8th. 

I'm hoping to create a journal of sorts for Sadie and to keep all of you informed thru this blog.  She won't remember all of this, but it will always be a part of her.  She will always be a "cancer survivor."

 

Thank you for all the prayers and love.  We feel so blessed to have such wonderful friends and family and it has definatley made this time easier. 

More of Sadie's story to come.

Calling it Quits

As much as I love the idea of blogging, I just can't keep up with it!

Seems like every time I sit down to the computer I find a million other things that need to be done first. (Sigh) Someday maybe I'll pick it back up again. And I'll let you know when that is. But for now, I'm calling it quits. (Ugh. That was hard for me to admit.)

Sorry!!! I love you all!

July - The Ranch

My Grandpa Foote grew up on a ranch bordering Zion's National Park! I still have a hard time imagining what that would be like.

Andrew loved the old catepillar tractor!

We hiked to Twin Hollow with all the kids.

We found some indian petroglyphs on the hike. It's hard to see them, but their near Evan's arm. The other picture was just to give you an idea how high up they were. Evan has no fear!

Carving away at the sandrocks.

And finally, the traditional cafe lunch before hitting the road.

I love this place!

Other notes to remember:

Car toppers and night travel are the only way to go!

Fireants hurt when they bite...just ask Evan.

My knees are not what they used to be.... a sad and painful realization.

And I have the strongest and toughest husband in the world...just ask anyone that went on Fat Man's Misery.

Family golf tournaments can be fun!