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.

Looking Back

This photo was taken soon after we'd been released from our initial hospital stay, and while still in the Induction phase.  See how my mom is holding Sadie?  Doesn't look very affectionate right?   But that's how Sadie wanted to be held.  She did NOT want to be touched or cuddled.  I am so glad that phase is behind us.  I am so happy with where we are today.   I'm sure two years from now I'll be saying that same thing.

I think back to the day she was diagnosed and the immediate ER trip following.  How my heart ached and tears just weren't enough.  I am so happy that is all behind us.  So happy with where we are today.

 

P.S.  Andrew was so bored in the hospital yesterday! 5 hours of his D.S. and Despicable Me and watching blood drip into Sadie's port.  I think this was good for him.   He had the option to stay and play with a friend, but chose the hospital instead.   It'll be interesting to see what he chooses next time.   Evan on the other hand, had a blast shooting guns with his friend Dallin and dodging adoring looks from Dallin's little sister.  I love it when my boys get to do boy things.  Thank you Chad and Cherisse!

Day of Chemo

Sadie spent the day at the hospital again (with Dave this time.)  She received Intrathecal Methotrexate (into her spinal fluid), VinCRIStine into her port, and Pegaspargase shots into her legs. 
Her hemoglobin was 7.2, and they normally give her a unit of blood if it's below 8.  But, Pegaspargase is highly reactive and blood is highly reactive, so they won't give them both on the same day.  This means we'll be back in tomorrow so she can get her unit of blood.  (I think I'm going to try bringing the boys with me and see how that goes.)

The exciting news is no more chemo at home for the next two weeks!  No more refusing to give her food or drink because the Mercaptopurine pill has to be given in the evening AND two hours after eating/drinking and half hour before eating/drinking.  No more "pokes" at home!  It's not really a poke, but the medicine stings as it goes in, so Sadie calls it a "poke."  (It's actually injected into a subcutaneous catheter inserted in her arm.)  I can't tell you how happy it makes me to be off those for two weeks!  She will go into the hospital once a week for Chemo and once a week for lab draws, but at home, we can leave her alone for the most part.  Just keep her feeling well with anti-nausea and Miralax meds.

With it being Winter break and all, I've been tempted to take the kids somewhere during the day.  But her ANC is mid 500s, and going down.  Won't be going anywhere with crowds that's for sure!  A good thing about spending the first month in the hospital is that Evan and Andrew understand how much we DO NOT want Sadie to get sick.  We DO NOT want her back in the hospital.  They understand, and we are finding ways to have fun at home.  (Pretty easy with all their new toys keeping them busy!)

First E.R. Trip

I spent the day in the ER with Sadie.  Not exactly what any of us had planned for our day after Christmas. 

Sadie was dehydrated.  We couldn't get her to drink and she wasn't peeing, so a call to the doctor, and we're heading into the ER. 

I knew this day would come, and I learned a lot on this first time around.  (For example, pack food.  It could be a lot longer than expected.)  I also learned inspiration will come as to who to call to watch the boys.  I am learning to ask for help and to rely on others.  And I can't tell you how thankful I am for friends willing to help us out.

Sadie is going to be fine.  The next two years will be rough, but she'll come out okay.  Andrew, I'm worried about.  He thinks I'm sending him away every time I take Sadie in.  He doesn't understand why he can't come too.  I could use some advice and inspiration here.

But we did it.  We survived our first emergency trip to the E.R.  Thank you Jarvis family!