Sadie

Sadie threw up tonight.  I guess she's not immune to all side effects.  Shucks!

Here's the latest. 
Thursday she had another IT.  It was a short visit to the hospital, in fact she was home by 10:30 AM.  That night she had a hard time sleeping.  She kept waking up with a horrible cough, a mucusy cough that seemed to hurt.  She wouldn't take a bottle.  No fever though!  Turns out it's probably sores in her throat causing the pain and mucus.  Another side effect of low counts.

Tonight the coughs turned into vomiting.  We gave her some anti-nausea medicine and hope that will do.  Right now she is sitting on my lap watching Sesame Street and Dave took three loads of dirty sheets and blankets down to be washed.

Oh, she also has a runny nose!  But, no fever!  We want her home for Christmas!

P.S. Yes, I know she is 21 months and still taking a bottle. I was just starting to wean her when she was diagnosed.  It was such a comfort at the hospital and an easy way to get liquids in her, that we jumped right back into it.  Someday I will wean her, maybe by 2.

Found this little gem from last year.

This was taken at my parents house almost exactly one year ago.

Tough Little Cookie!

Sadie is handling her treatments incredibly well! She is one tough little girl and I am completely impressed! Today we went to the elementary school to play. (That's where the photos were taken.)

It's about time I try to catch up on this blog. Coming off the steroids was not comfortable. She was achey and needed Tylenol once during the night so she could sleep, and again during the day so she was comfortable. But by Sunday, she was back to her happy cheerful self! It had been a month since we had seen our little Sadie like that! It's so nice to have her off the steroids!

We had one good, happy day, and then Monday the port went in. She had a really hard time coming out of anesthesia to the point they actually had to sedate her again so she'd calm down. But her body's healing around the port really well and they actually accessed it for the first time on Thursday. Monday we also had our consultation with the Oncologists to discuss her next phase. That was a little overwhelming. A few new bits of info I learned:

• Sadie's treatments will continue for about 2.5 years.
• Sadie is classified as Standard Risk. (Not high, not low.) She'll be getting the standard treatments. However, they split the standard risk category into 3 sub categories. Standard risk High, Standard risk Low, and Stand risk. Because they saw Leukemia cells in her blood on day 15, she is classified as Standard Risk High. This means a little more Chemo and treatments than the others. But....better to get a little more than she needs, than not enough. We do not want to repeat this again!
• This middle phase, (after Induction and before maintenance,) is split into 5 phases. Rather than bore you with the details, it seems like in general they alternate between 2 months of intense treatments, then 2 months of less treatments, then intense, then not intense, over the next 10 months.

Thursday was her first day of the "Intensified Consolodation" phase which lasts 8 weeks. Dave took work off and spent the entire day in the hospital with her. I did the mom thing at home with Andrew and Evan. She was given 4 different types of Chemo in four different ways. She was put under again for the I.T. (into her spinal fluid), her port was accessed for Chemo thru there, they placed a subcutaneous catheter in her arm to administer the 3rd form (Dave and I will be giving her this at home,) and we were sent home with a pill form to give her every night.

Every thursday for the next 5 weeks, Sadie will be in the hospital under anesthesia for IT Chemo. Most of the other chemos will be given at home. Every Monday she will be in for a clinic visit. There are other days we will be going in as well...I actually mapped it all out on our calendar, but I'll spare you the details. It's a lot to get our brains wrapped around, but we're getting there. One day and week at a time.

Andrew and Evan have been incredible with her. They make her laugh and feel normal. I think because of the bad days, it makes the good days and happy moments so much more enjoyable. We are thrilled to see her up and walking and playing like nothing was wrong.

She is one tough little cookie!

Side note: The form of Chemo she was given thru her port can be hard on her kidneys and bladder hence the long day at the hospital receiving IV fluids and monitoring. We're supposed to change her diaper every 2 hours to watch for blood or signs of problems. We also have to make sure she is drinking lots of liquids. It's hard to explain or convince a 1.5 year old why she has to drink her bottle.

The End of the Induction Phase!!

Thursday was the last day of Sadie's Induction Phase.

The Oncologist called tonight with results from the bone marrow aspirate. No Leukemia cells found!

Here's my take on the Induction phase:

Yes, there was Chemo (four different types). Yes there was anesthesia and the picc-line and many, many blood draws. Yes, there was the long hospital stay, the life-saving units of blood and platelets, the antibiotics and praying for her ANC to go up. But then there were the Steriods! Those nasty steriods and their nasty side-effects! That's what has impacted me the most from the Induction phase. Sadie's ravenous appetite and crazy weight gain. (Honestly, I don't know if her little body could have taken much more!) The doctors keep reassuring us the weight gain is normal and due to the steroids; that she will lose the appetite and the weight during the next phase....but we can't help but worry as we watched her swell up. I hesitated to post the pictures.

Here is Sadie on Day 7.                                 

 Here she is on Day 29.

I hate those steroids.  But because they'll help cure our little girl, we faithfully gave them to her... every. single. dose. (Important note: The steroid's job is to suppress the production of white blood cells, which happen to be what the A.L.L. cells are...bad, fast growing white blood cells. The combination of Chemo killing fast growing cells and the Steroids slowing production of white blood cells is what the Induction Phase was all about.) And it seems to have worked! Thursday morning was her last day of this intense Induction Phase. Hurray!

Now onto the next phase. We're not positive what that has in store, but we'll meet with the Oncologists on Monday to discuss the treatments and the plan. What we do know, is it involves high doses of Chemo, lots of nausea, vomiting, hair loss, and just plain feeling lousy. We can't wait for our Sadie to feel well again.

Appointments

Tuesday was Sadie's first clinic visit since we left the hospital.  All went well, and I'm glad to have it behind us.  The nurses keep saying things like, "You'll see a lot of us, " and "You'll be spending a lot of time here."  Glimpses into what to expect I guess.  Tuesday's visit was simple.  A checkup and exam with the Oncologist then lab draws to see what her numbers look like. 

Thursday (today), Sadie is having another I.T. done (Chemo into her spinal fluid), and the all important bone marrow aspirate.  She will be put under for this.  The results from the bone marrow aspirate will tell us how she's responded to the treatments so far, and will determine what her future treatments are.  We hope and fully expect to find that the Leukemia cells are gone!  Then it would just be keeping her in remission.  It's a big and anxious day.  Dave took her to the appointment this morning at 7:45.  He is so sweet with her.  He completely adores her.  I got Evan to school and am staying home with Andrew.  Divide and conquer.  It's hard not being there with Sadie!

Monday, we go back to have her port put in.  As much as I hate the thought of her being put under again, and I hate to think what her body will go thru to place it, I will be so grateful to have it in.  She hate's bathing with the picc-line because we have to wrap it, the picc-line takes more maintence having to flush it with Heprin every day, and there's a higher risk of infection than with a port.

We also expect to have a consultation with the Oncologists early next week to go over her next phase of treatments.

P.S.  We are both sick to our stomachs.  Dave updated the software on his IPad last night and lost every video and photo he'd taken.  Everything from the hospital, gone.  It makes us sick.  Luckily we emailed some out, so not all is lost. 

Home Sweet Home!

Saturday, the day after I last posted, Sadie's ANC jumped from 231 to 700!  What?!  This was way beyond my expectations!  I know our prayers were heard and that Heavenly Father knew how desperate we were to be together under one roof again. 

Sadie wasn't as excited to go home as I thought she'd be.  It's hard to know what her little mind understands.  I think she really thought her hospital room was our new 'home.'  I told her, "Sadie, we get to go home!"  Her response was "No!" and shaking her head.  Then I said, "Sadie, do you want to go in the car?"  "Yes!" and excitement!

Since then, it's taken a while for us to adjust.  After three and a half weeks in the hospital, the stress of it all was showing.  I've found we all handle change and stress differently.  Evan became bossy and mean.  Andrew became emotional and anxious.  But by Tuesday, we all felt a little more like a happy family.  Sadie laughs more and smiles more.  She sleeps in our room again, and still doesn't sleep well, but she's much happier!

My mom flew home Tuesday afternoon.  I think we've maxed out on help from our moms for a while.  Their families were needing them back home again.  But now our ward family has been amazing and has stepped right in to help.  When people asked what they can do, I kept telling them, "I know I'll need help, I just don't know what yet."  This was true, and still true to some degree.  Most of Sadie's appointments aren't scheduled until the night before so it's hard to plan ahead.  I'm so thankful for our Home Teacher who seemed to know exactly what we needed even before I did.  He has us all organized with carpools and meals and more.  We are surrounded by wonderful people!

It feels so good to be home!  A little surreal, but so nice!

Sadie's ANC

was 231 this morning!Evan is charting the numbers at home.  We're all anxious to be together again as a family!

Side effects

Sadie's cheeks are getting puffy.  They're just so cute!  I wish she'd let me kiss them!  Tonight, Dave and I were playing with her and asking if we could give her a hug.  She smiled and pointed to Dave and I....she wanted us to hug each other instead.  "Can I give you a kiss Sadie?"  She pointed from me to Dave.  She wanted me to kiss Dave instead.  Then she smiled.

And her hair is starting to fall out.  Just a few strands at a time.  We find them on her clothes, on her sheets, and she pulls them off her binkie.  "Yucky," she says, and hands me the piece of hair.
(This photo was taken on Sunday, day 18 of treatments.) 

Day 22 of treatment, Day 23 in the hospital

Sadie's ANC is playing games with us.  She needs to be at 500 in order for us to go home, and in order for her to have a port put in to replace her picc-line.  (Here's a link that will explain a port.)

To give you an idea of the numbers, the reference range we've been given for a normal, healthy child is an ANC of 1500 to 8500.
Sadie's ANC has been hovering in the 20s and 30s.  Close to nothing.
Then Sunday it jumped up to 120!
Monday it went up to 170!  (I thought we were close to heading home!  I could sense the urgency around us getting us ready to go home.  I finished my "trainings."  They prepped the medicines, we signed the consent to have the port put in.  We were ready!)
Then Tuesday it dropped to 60. 
Wednesday it was down to 56.  (They tell us this is because they did a manual count rather than an automated count.  This means a person rather than a machine counted the cells.  When it's a manual count, they use a much smaller sample size, and that's what they attribute the lower ANC to.  It makes me wonder what's more accurate, a manual count or an automated count.  Which one is telling us her real ANC?)
Today it was back at 170.  (They did an automated count.)  I'm not sure whether to be excited or not.

I'll wait and see what tomorrow tells us. 

Her WBC (White blood cell count) is gradually going up and her hemoglobin and platelets are low but stable so these are good signs.  Today was another dose of Chemo.

Sadie's Story: Diagnosis Day (part 1)

The question I get asked most is "How did they know?" or "How did they catch it?"

Looking back, the signs are so obvious. But at the time, I didn't know what those signs were.

Possible signs of childhood ALL include fever and bruising.

These and other symptoms may be caused by childhood ALL. Other conditions may cause the same symptoms. A doctor should be consulted if any of the following problems occur:

·         Fever. (yep. She'd had a fever for 6 days before I took her in!)

·         Easy bruising or bleeding. (yep! bruises popping up that I didn't know where they came from.)

·         Petechiae: flat, pinpoint, dark-red spots under the skin caused by bleeding. (noticed these on her knees while waiting in the ER)

·         Bone or joint pain. (yep, I called it achiness. I was giving her a bath the night before I took her in. I thought this would help bring her temperature down. She just sat there and cried. When I cleaned her body, she kept saying "Ow, ow, ow.")

·         Painless lumps in the neck, underarm, stomach, or groin. (Sadie's lymphnodes behind her ears were swollen more than usual.)

·         Pain or feeling of fullness below the ribs. (her stomach was swollen even though she hadn't eaten for 2 days.)

·         Weakness, feeling tired, or looking pale. (definatley. I spent all of Monday holding her in my arms or sitting on the couch next to her.)

·         Loss of appetite. (yep, hadn't eaten for two days)

http://www.cancer.gov/cancertopics/pdq/treatment/childALL/Patient

The two signs that worried me most and made me call the doctor were her persistent fever, and that she woke up Tuesday morning and her heart was racing! She was miserable and it wasn't getting better, it was getting worse. Evan had just had a runny nose and cough so I assumed she had the same thing, but while Evan got better, Sadie got worse.

I kept telling Dave, "I'm worried about Sadie," but never did it cross my mind that it could be so serious! She had been off and on sick for over a month. In fact, she had just finished antibiotics less than a week ago for what we think was an ear infection. When she started showing signs of illness again, my thought was... "What is going on? She's usually so healthy! I guess I'll wait and see if the fever goes away on it's own, if it doesn't I'll call her doctor again."

I kept expecting her to wake up and feel better....for the fever to be gone.

We kept her home from church on Sunday. I only had three kids in my nursery class, so I knew a bug was going around. Monday, she was really sick with a fever, no appetite and lethargic! I was really starting to worry. This illness should have been gone by now! Tylenol and IBuprofen were not helping her feel better. She hadn't been eating, but she was drinking just fine. I decided Monday would be a sick day, I would just hold her and cradle her all day long, by tomorrow, she would be better.

But Tuesday morning she woke up still feverish and her heart was racing! I called her Pediatrician's office and made an appointment. (Our usual pediatrician, Dr. Bernat was out of the office, so we saw Dr. DeHovitz.)

Andrew, Sadie and I sat in the little room. I described all the symptoms I could remember to the nurse. She's had a fever for about a week, she hasn't been eating, she feels miserable, she just finished antibiotics less than a week ago, oh, and she has a cough. (I think that's all I thought of at the time.) I found out later, that the nurse, upon leaving, mentioned to Dr. DeHovitz, "She looks a little pale to me." Yes, she did and I am so thankful for that nurse! Dr. DeHovitz did a very thourough exam. He pushed on her tummy quite a bit more than usual.. He asked how long she'd had the bruises. (I remember in that very moment, noticing another bruise on her foot that I had no idea where it came from.) He listened to her heart.

Dr. DeHovitz: "She looks a little pale. Does she seem pale to you?"

Me: "Yes."

Dr: "I'd like to have some blood tests done to see if she's anemic. And if she is anemic, I want to know why. Are you okay with that?"

Me: "Yeah."

Dr: "The nurses will draw the blood right here, and we'll send it down to the lab right away. I want you to wait around for the results. Can you do that? It takes about an hour. And then depending on what the results say, I might want to get a chest x-ray."

Me: "Ok." (In my mind I'm thinking, an hour?! I've got an exhausted and sick baby and a hungry 4 year old. How am I going to keep them happy and entertained for an hour?! Sadie really needs a nap in her bed!")

I asked if rather than waiting in the room, if we could walk out and get some food from the vending machines and let Andrew play on the play structure. So that's what we did. Sadie exhausted in the stroller, and Andrew cheerfully coming along.

(I should note, that drawing the blood, was NOT a fun experience! It took them twice to find a vein. I do NOT handle needles well! I made it thru the first poke, but when they started saying things like, "I think the vein collapsed," I had to sit down. Poor Sadie. Mom's a wimp, Andrew's a trooper, and I had no idea that this was only the beginning of many more tramatizing pokes.) I did not have the thankful attitude I should have had at that point.

It took maybe 45 minutes and the nurse came to get us and lead us back to the room. The minute we went in the room, the nurse's attention went straight to Andrew. She asked him about the books, if he liked books, if he could help her sort the books and put them away. She hustled him right out the door with her, and surprisingly, Andrew went along without any hesitation. (My thoughts: This can't be good. Why is she taking Andrew?)

Here's how the news came: (I'm paraphrasing of course.)

Dr. DeHovitz: "Well, we have the results. I'm sorry it took so long, I've actually been on the phone with some experts who've been looking over Sadie's labs. The good news is it's very manageable. (Pause.) The bad news is we think Sadie has a type of Leukemia."

Me: (!!!!!!) speechless. "Really?" (tears)

Dr: "We're 99% sure. There's different types, and we need to send you to the ER where they will confirm what type she has. We've already spoken with them and they are expecting you. Are you okay? Do you have questions?"

Me: I think I said something like, " I don't even really know what Leukemia is other than a type of cancer."

Dr. DeHovitz did a great job explaining it in a quick and simple way. Basically that her bone marrow is pumping out WAY too many white blood cells. Bad white blood cells that are crowding out the good ones, the red blood cells and the platelets. This explained the anemia and the bruising.

I asked more about how they knew. He explained the signs. The bruising, the paleness, the lethargy, the bone pain, the big tummy because her kidney and liver were swollen and overloaded with these bad cells, the fast heart rate because her heart was furiously trying to pump oxygen thru her body with what little cells could carry it.

Sadie was sick. She was very, very sick. I remember as I held her limp little body in my lap with only her diaper on her body....all of a sudden she felt so fragile!  When before I would squeeze her and hug her tight, all of a sudden I felt like if I squeezed too tight she would burst, or that the cancer would spread rapidly through her body.

I felt awful.  And to get through the pokes and the long wait, I had been comforting Sadie with, “just a little longer and we’ll go home, you can have your binkie and a nap.”  (I had forgotten her binkie.)  We were not going home, Sadie was not going to get that nap in her bed.