Thursday, November 18, 2010

Expect the Unexpected

We have had a fun week this past week.

Friday we went and raked those leaves at the Stevens house. It was so much fun! It sounds like a lot of work, and it was, but everyone worked really well together and we got it done in just over an hour. There were only 3 adults, and then there was 11 kids and 2 babies! ALL the kids LOVED Bill and really worked hard to get it done. When we were done we had 22 big garbage bags full of leaves! Even you worked your little tail off.  You helped rake off the trampoline, and helped bag all the piles we made.  I was very impressed and you wore yourself right out. You came home and took a 2 hour nap!

Jill suggested a race to see who could bag their pile of leaves fastest. Ive
never seen kids spring into action and work so fast. It was hilarious!

Lots of helpers!

Everyone rushing to stack the bags of leaves and
count how many we filled. 22 bags equals a
lot of leaves!
Saturday was a fun day too! Megamind was a really cute show and you LOVED it. You've been quoting lines from it ever since! HopeKids actually opened another theatre because there were so many people on the wait list. Its pretty neat.  They have a FREE box of popcorn and a drink for EVERY kid! Then we got to watch the movie. It was over right about lunch time so we thought we'd grab lunch. Turns out the Mayan Adventure restaurant was right next door so we went there. You were totally mesmerized by the water and "mountains" in the restaurant. The divers were pretty fun to watch too. Unfortunately all the excitement distracted you so well you didn't eat. Not that that's a surprising thing.

I swear I can watch you get thinner.  Today I made you cinnamon rolls and you ate 4 bites and said you were full. I asked what you wanted for lunch and you said...crackers. Nice. It makes me nervous because you aren't even on any chemo. I hope when we start Maintenance. Its not worse.

At least you seem to be doing really well. You are literally running circles around us (see pic). I cant believe how much energy you have...its like its impossible for you to hold still. Its fun to watch you return  to your old self.

Literally running circles around us!

Singing AND running!
Sunday was a great day for me.  Our WHOLE family went to church together. Since your counts are better we thought we'd take you just to Sacrament Meeting.  It was so nice. Its going to take some practice for you to get used to sitting still for church again.  You were pretty antsy, but seemed happy to be there. We didn't feel comfortable taking you to Primary because too many people come to church sick.  Lots of coughs and colds and sniffles in the primary room.  Better safe than sorry. It was healing to be there together.  I cant believe how good it felt. Like someday everything in life will be normal again. Its good to enjoy the little things...they bring the simplest form of happiness.
We did a little Christmas shopping the first part of the week, and picked out some fun crafts to do on Thanksgiving.  I'm really looking forward to Thanksgiving...we have SO much to be thankful for this year.

Speaking of things to be thankful for...your Make a Wish invitation came this week! Boy do they know how to make something special from the get-go.  It was a round castle box with an invitation and a key inside. The Invite said:

"It is our deepest honor to invite you
and your family to come visit
 a Wishing Place for the
special occasion of making your wish.

Please bring this key with you when
 you come, for it alone will open the
Wishing Room at the top
of the Wishing Tower.

We eagerly await your presence."

How cool is that, right? You were so excited to open the package and see what was inside. We cant wait to go. Were just waiting for a call from your wish granters to set up an appointment.

Make a Wish box! Oooo...wonder whats inside!

A castle? Wonder whats inside that!

A key to open the Wishing Room in the Wishing Tower!
 Awesome.What else?

An invite to the Wishing Place! Now if only you knew
what to wish for!
The only thing I'm not sure about is WHAT your going to wish for. I read somewhere that about 75%  of people pick Disney World as their wish. But, since were going anyway in May, that's not what you're gonna do. So, we talk a lot about what you want to wish for. I really wanted you to wish for something that you will remember. Something like a big fancy playhouse or tree house. Make a Wish sent a parents packet that explains how the whole thing works. They said that the wish should be 100% yours.  Even if it is something small and simple, or big and extravagant. We should let you be completely selfish and pick something that YOU really want.  So, I have adjusted my thinking and tried to get you to think about what you really want. The only thing is it changes by the minute. Last time I asked you said, "a cow and a horse." (we had just sent our cows to auction). Before that it was a tree house, before that a toy dog, before that a barbie house, and before that another American Girl doll with accessories. It seems to change based on what commercials you see on TV, and whats going on day to day. I want it to be your choice, but I also want you to pick something lasting. Not a little toy something that dad or I could get you. Something special and magical...or memorable. But what? Guess we'll all be surprised.

Another exciting event this week has been the appearance of little sprouts of hair. I took a pic a week ago of you head and you had just a touch of peach fuzz. Then I took another today and I don't know if you can see the difference in the picture, but it has thickened a ton! You actually have little hairs all over  your head. We were super surprised because its WHITE! Don't know if that's the way it will always be. Maybe it'll grow in blonde (Carly's got her fingers crossed...she doesn't like being the only blondie), who knows. I just assumed it'd grow in the same color. Everyone has said it usually comes in pretty curly though. I miss your beautiful curls. That was always something everyone noticed first about you. You had so much thick beautiful hair that hung in curls around our face.  You just let it hang in your face too. I would pull it up, and you would pull it out. I had to keep "reebee headbands" (your word for rubber bands) in the kitchen so I could pull it back out of your face! So beautiful it was. So shiny and healthy. I miss it.
Your cute head one week ago...
Your cute head today...all the fuzz is hair!
Not a blurry picture.
Just though I'd throw in a "before" picture. This was
the day we brought you home from the hosp. after
diagnosis. Your hair had already started to thin. 

Scott came and drew some blood yesterday to check your counts. I cant believe how well you do. You just lay on my lap while he draws the blood and chats with you.  You made him a card.  It was cute. He told you last week that this week would probably be his last visit. He doesn't see kids much in Maintenance. So you wanted to make him a Thank You card.  You are such a thoughtful kid. I don't know how you do it...what 4 year old thinks about Thank You cards?? Only really special ones.

I was shocked and stunned when your lab results were faxed over. (I have them fax the results to me too, so I don't have to wait for the clinic to call to find out what they are) Your counts had actually dropped to 700! What? They had to be 750 to get chemo. The nurse said its not uncommon to have to delay Maintenance a week or two because the ARAC drops your counts 1 to 2 weeks AFTER receiving it.  I was still surprised. I really expected them to be good enough.  So, instead, were having another CBC at home next Tuesday, and then if counts are good we'll be doing your chemo and backpoke on Wednesday. (because Thursday is Thanksgiving) Hopefully that'll be good, and you'll feel good for Thanksgiving.  That would definitely be something to be thankful for.

Friday, November 12, 2010

Such an amazing girl!

My Wee-Mee is back! What a difference a week without chemo, and some fresh blood and platelets can make!

Each day you wake up more and more like your old "pre-cancer" self. You are running (yes, running), and riding bikes, and playing with friends, and talking like crazy...Ive never heard you talk so much!  Not to mention your wrestling with your daddy again! This is huge!

Before you were diagnosed you and dad used to wrestle and rough house nightly! It was so funny to watch.  You had NO fear.  Daddy would flip you around and throw you in the air and  you would laugh till your belly hurt then say "again, again, again." My favorite trick you would do was when you would sit on daddys shoulder while he was standing up. Then he would hold your wrists and ankles (like you were hog tied by his hands), then he would have you fall forward, off his shoulder, head first between his legs! It always gave me the heebee geebees! I couldnt believe you would trust him enough to free fall face first with no hands...just him holding you.  It was crazy to watch. 

When you started having "issues", and your cancer symptoms started to show up, you seemed to lose confidence in yourself.  It was like you were all of a sudden afraid. Yours and dads nightly wrestling matches got fewer and fewer until they disappeared. You cant know how nice it is to see you playing your old self. The confidence seems to be coming back. I think that your lack of decent blood, and all the weakness, made you light headed and nervous. Something you were far too young to verbalize. I was worried I'd lost that part of you forever. Im so glad to see it coming back...even if just a little.

Scott, your home health nurse, came yesterday and drew some blood.  Even though your not getting chemo this week, they wanted to watch your counts to monitor your progress.  Turns out your counts were up again! Woo Hoo!! They went up from 500 last week to 800 this week! It never ceases to amaze me how well your body bounces back from treatment. I wish I was as resilient as you.  If you feel good today, then you enjoy every minute of it...your not worried about tomorrow.  You live totally in the moment. I wish I could be more like that. Im always worried about how your gonna be tomorrow, and the next day.

One thing is for sure though...were going to live it up these next 7 days before your next treatment! Today were going to visit Grandpa Max in the rehab center (he had to get hip surgery), then were going to rake leaves at Bill and Jeannie Stevens house. Bill passed away last night and we are going to really miss him. He was (IS) a great man.  Were going to do the leaves to help out Jeannie. You have always really liked Bill. You would talk to him, even when you were in your yucky treatments and didnt talk to anyone.  He was always calming, and Im sure it helped that he always had a sucker in his wheelchair for you! He will be missed.

Tomorrow we are going to a Hope Kids activity. The Megamind movie screening which I am excited about. So is everyone else...its going to be a completely full theatre! Maybe we can even do church... at least sacrament meeting as a family would be nice. Looking forward to a fun week with my family.
After Scott drew some blood, you wanted to play doctor.
You usually do. Today you had a live subject...not
just one of your stuffed animals or dolls!

Friday, November 5, 2010

Who needs platelets anyway?

Apparently you did, cause when I talked to the nurse this morning they said to bring you in.  It was my first time "all alone" without another adults help.  I should have brought reinforcements.

We just got off to a bad start. You were in good spirits on the way down. Then I realized I forgot the EMLA. No worries, we'll just borrow some of Pams (the "weighing nurse" you call her cause she does your height weight and vitals at the start of clinic appts). We put some on when we got there, but she didnt have press and seal so we had to use a mini window sticker. No prob...or so I thought.

Your poor skin was raw to begin with from yesterdays multiple port/sticker removal. Not to mention the 4 bandaids we went through when you wouldnt quit bleeding. So, when we took the little EMLA sticker off it kinda hurt. Which was ok, until they had to scrub (literally) your port with a chloroprep cleaner.  You screamed bloody murder it stung so bad. I blew on it to cool it of  a bit, and the nurse tried to be gentle but it had to be done. Poor kiddo. It LOOKED like it hurt, cant imagine how bad it felt. To make matters worse they had to put another window sticker over your freshly sterilized and accessed port! Luckily, the understanding nurse put an special mesh bandage over it that comes off much easier when your all done.

Once you were hooked up they gave you the usual Tylenol/Benadryl combo (to pretreat for allergic reaction to the platelets). I explained to you before hand that it would probably make you feel funny and sleepy.  You said thats ok cause you just wanted to watch a movie in the Infusion Room anyway. So, after all that we headed to infusion where you got increasingly aggitated. I knew it was because the Benadryl was kicking in.  You kept grabbing your head and rubbing your eyes. I knew the feeling from when I was younger. Id had an allergic reaction to something and had hives covering my legs and back....the docs gave me a Benadryl shot and the hives went away, but the medicine made me feel really weird.  REALLY weird.

I started a movie for you in an effort to distract you, and it worked for a minute.  You kept crying out that your port hurt, and the sticker was itching it. Im sure with all that raw dry skin it was very itchy.  Every time youd cry out it'd scare Tucker and he'd start to cry. Id comfort you, then try to calm him down. Back and forth that went for about a half hour when you finally crashed and fell asleep.  It was good cause then I could try and get Tucker to sleep.  He was asleep for maybe 10 minutes when you woke up crying (rather loudly) that your port hurt and you wanted to go home. Tucker woke right back up and the nurse came and unhooked your platelet tube.  I told you reassuringly that we had to wait a few minutes then the nurse would unplug you and we could go.

That was a big mistake.  You lost it instantly.  You DID NOT want someone messing with that sticker.  When the time came to get it done I told you you could choose to sit on my lap and have the nurse do it or sit on the chair and have me do it.  You chose to sit on my lap, but as soon as the nurse started lifting your shirt you lost it again.  I have never seen you scream and throw a fit like that EVER! Not even on steroids! You were kicking and screaming and arching your back.  Flopping around. The nurses tried to pin your legs down, but stopped when you said you need me to take you potty first. I took you in the bathroom to try to calm you down and help you go. You went but were having a hard time calming down so we stayed in there a minute till you did. It was really hard for me to watch you have such a hard time. I kept trying to tell you they didnt have to put any cleaner on it so it wouldnt hurt or sting at all, but there was no reasoning with you.  Meanwhile I could hear Tucker in his stroller crying.

I finally got you to take some slow deep breaths to help you calm down.  I could see in your eyes that you wanted to calm down, but even you couldnt control your feelings. You kept saying "Im just scared mom, Im just so scared mom..." It breaks my heart that you have all this to deal with. FINALLY you calmed down and I RE-explained that there would be no stinging cleaner, and that if you could hold really still for the nurse I would take you to the gift shop after to look for another Unicorn doll (you had lost one given to you in the hospital by Ry).  That seemed to be a good motivator.  You wanted me to hold you and told the nurse to go extra slow. She promised she would and you were very good after that.  The un-plugging was painless and you even got a Princess and the Frog bandaid. All the while, Karen (one of our fave nurses), held Tucker to calm him down.  Thank heaven she was there.

There were no unicorns, so you picked out a little stuffed puppy that came in a little cloth carrier.  You named it Skittles, then Sophie, then Hallie, then Sam, and just before bed it was Skittles again.  You seem to love it, its pretty cute. And worth every penny.

Yikes, what a day! I am exhausted. When we got home we sat on the front porch and enjoyed the crisp fresh air. It felt good after being cooped up in the hospital all day.

We watched the beginning of another beautiful West Point sunset and I was reminded that everything will be ok...and so will I.

Thursday, November 4, 2010

Halloween in the hospital, and meds at home!

I have to say, when we left clinic last Thursday, I never thought we'd be headed back with a fevered Wee-Mee the next day! 

Friday started out great...played with the neighbor kiddos outside and seemed in good spirits. Then about 4 in the afternoon you started complaining of a headache and wanted to lay on the couch.  You were totally out in less than five minutes and didnt wake up for 3 hours!! I had made and cleaned up dinner, and we were deciding what to do with the rest of our evening. After you woke up we new pretty quick what we were gonna be doing! You woke up complaining of back and leg pain...I gave you Oxycodone (we cant give you Tylenol cause it would mask a fever, and Ibuprofen thins your blood and thats a no-no for leukemia kids) and that seemed to help. 
Sooo sleepy!

Then you started to get droopy heart sank. You, and your sisters and brother have always gotten these glassy looking droopy eyes when your sick and have a fever. As soon as I saw those sad eyes I knew... We took your temp and it was 100.4. The docs say when its 100.4 you wait an hr, retake the temp and if its the same or higher we have to bring you in.  We called after 45 minutes and the nurse said to check again in 30-45 minutes and if it had gone up to even 100.5 to bring you to the ER.  So, when the time came we checked and decided it was time to take you in.  Its always nerve racking and scary.  You were scared and didnt want to go.  Its been a long time since you had to go in for a fever so we had to do a lot of reassuring and comforting.

Once we were ready to go (11pm) dad and I decided it'd be better for Tucker (who was asleep in bed) if I stayed home with him.  Hes been getting teeth and so we knew if we woke him up to bring him down with us he'd probably be up all night, and fussy. It was so hard for me to watch daddy drive away with you in the truck and stay behind. I had to fight back the tears. I want to be a good mommy to ALL my kids and it stinks when you cant be there for everyone.  Alyssa and Carly had gone to have a spend-over at Grammy Shepherds and so it was me and Tucker, alone in the house, while dad took you down.

I told daddy to keep me posted on what was going matter what time it was.  He called me at 2am and said that your ANC came back at 600, but since you had been getting daily chemo, at home they knew it was going to go dip down even lower.  They decided to admit you and have you stay over. The rule is that you have to be fever-free for at least 24 hours before you can go home...

Well, Saturday (Halloween) you had a pretty steady fever. Everytime the tylenol wore off it'd spike back up (they can give you Tylenol at the hospital, but we cant at home). You seemed to be feeling ok though....your spirits were good.  Dad went home about noon to spend some time with your sissy's and take them trick-or-treating, and Tucker and I stayed to keep you company.  He was a bit more of a handful this time around, but he kept you laughing with his silly squeals and squaks.  You kept mom busy trying to keep you entertained!  We did about 5 Halloween crafts, and played with a doll house they brought in, and watched movies, and read books, and colored.  I have to admit it was kind of nice to hang out with you and not have to worry about going anywhere or getting anything done...just some 2 on one time (Tucker was there too!) I should do that more often...just play.
They're amazing at the hospital..they really aim to please.
Look at you..actually having fun in the hospital!

This was Bauer. A therapy dog that came to visit, and you
 LOVED him. You love all the Therapy dogs we meet. Bauer
 is a King Charles Spaniel and you got to feed
 him his favorite treat...Cheerios!
 About 4pm on Saturday they had to give you another dose of Tylenol and then your fever never spiked back up. I kept waiting for your fever to come back again but was so relieved when it didnt! The nurse said if it it stayed away we could go home the next evening!

Sunday morning came and we found out your ANC had dropped to only 300, and your blood levels were low.  They decided to give you another blood transfusion, and said that we could still take you home, even though your ANC was so low, as long as your fever didnt come back.  It didnt, but we had to give you IV antibiotics every 8 hours until your ANC was 500 or higher.  They said they would send home health out the next Thursday to check it again.  I never saw a happier kid! You were so excited to come home!
Blood...thank heaven for donors!

Eating pepperonis and getting blood..two good
reasons to smile!
I am always amazed at how much better you look after they give you blood! Your cheeks get all rosy and your energy levels go up. It really brings the life back to your little body.  It makes me think of that story from the scriptures...The one where the lady has had a blood disorder of some kind for 12 years, and spends her fortune away on doctors to heal her and no one can.  She hears Jesus has come to town and feels like if she can just get to Him and touch His robe she would be healed.  She struggles through the crowd and touches the hem of Christs garment and is healed. Jesus could feel the power to heal her leave His body and he spoke to her and blessed her....I am always amazed at her faith, and yours.  I can see you reach out and faithfully accept the help of those around you...and its are being healed!  Im so grateful for modern medicine! What a blessing it has been to our family! That, along with the countless prayers and priesthood blessings, are why you are doing so well!

Even though I knew it was bound to happen, I had a harder time than I thought I would seeing you in the hospital again. It brought back a flood of terrible memories for me. Im grateful the experience was much easier on you this time.  It'll be good for both of us to replace old, bad memories with good ones.
This is you "flexing all your muscles". Dont know
why you do it that way, but I dont correct
you cause its cute!

Coming home and giving you the antibiotics was a strange experience too. I can remember when we brought you home from the hospital the first time after you were diagnosed and we had to give you antibiotics. I was terrified! Thats putting it lightly. I was so afraid I would forget something or do it wrong or mess it up somehow. Plus I didnt think I could do it. We got through it and this past few days of giving antbiotics was nothing.  I kept thinking, while I was hooking you up to the medicine, "This is no big deal..I cant believe I've reached a point where doing this to you is no big deal." It was almost an out of body experience and such a stark contrast to the way I felt  5 1/2 months ago.  I didnt know whether to laugh or cry...
We've found when you suck on a hard candy
while getting your port flushed it doesnt bother your
nose as much. The ball in your hand is your
antibiotics. Kinda cool..its pressurized so we dont have
to hang it from an IV pole.
You were so good about it too. We had to give you the meds at 6am (ugh), 2pm, and 10pm.  I was really worried about the first 6am dose. Not knowing how youd react I tried to give it to you without waking you up...that didnt work.  To my surprise you woke up and said, "Oh hi mom, I didnt know you were there." I said hi and told you what I was doing.  You said, "oh yeah...this is WAAAY better than doing it in the hospital mom!" I couldnt help but smile. What an amazing kid you are and always so positive!

Scott (home health nurse) came today and did a CBC.  Turns out your ANC was exactly 500! Yeah! No more early morning meds! AND you were most excited about getting unplugged! No more tubey for you.  You took a nice long bath with bubbles and a Barbies.
Perfect outfit for celebrating. Complete with cape, dress,
shirt, apron, dress-up shoes and leggings. All essential
for celebrating a few hours free of Mr Tubey!

Your platelets were low...the clinic called and said to watch for bruising and paticii (dont know if that spelled right).  You have both, and when I unplugged your port access it bled for 15-20 minutes.Right through your bandaid, shirt, and undershirt.  Gonna have to call clinic and see what they say in the morning...