Thursday, September 30, 2010

Another clinic visit...

Well, we made it through another visit to the clinic. Fortunately nothing too eventful happened. Just a couple of things...

First of all Grammy DeSoto came with us to chemo in dads place.  It was fun for you and its always good for me to have help. But we always miss daddy when hes not there.

Rachelle (the nurse that brings you toys) brought you a doll and a bunch of doctor stuff for you to play with. But not just toy dr. stuff...REAL doctor stuff. I had no idea you had paid so much attention to whats going on. You had everything (literally) the nurses use to clean and access a port.  I was amazed as I sat there and watch you clean your dolls port site...using all the right steps. (first the alcohol prep pad, then the 3 sterile cleaning swabs, then the sterile scrubber) Then, to my amazement, they let you access your dolls "port" with an ACTUAL port needle. Once you accessed it you checked to make sure there was "blood flow" then put the window sticker over it. Then you proceeded to take your dolls blood and then transport the blood from the big tube to the little one (all of which rachelle had there for you) so you could send it off to the lab.  After you were done with that you gave your doll chemo and de-accessed her.  It was amazing to watch!  You did little things that I have seen the nurses do, but never really noticed. For example, you pulled your gloves off by sticking your thumb underneath the glove by your wrist and turning it inside out on your hand, then used that glove to pull off the other one. Then you stuck your "blood sample" inside the glove and tried to tie a knot in it (cause thats what one of your home health nurses does to take the blood to the lab.) You were totally into it.  You must've gone through three full sets of equipment before they finally made you a take-home bag of dr stuff.  I was stunned to say the least. I knew you knew what was going on, but to be able to do it all step by step was amazing.  You did things I'd seen done a million times,but never really noticed. I will be forever in awe of all you can take in and process.

You got chemo fairly uneventfully.  Your labs came back and your ANC was low. (really long heavy sigh) We were expecting that but it still stinks.  You level were only at a 700 which is considered a high risk for infection.  Which basically means if you get any kind of fever 100.4 or higher you go into the hospital and will have to stay for at least a couple days. (double heavy sigh) A low ANC basically means your body has little ability to fight off infection. So, if you get a fever, we have to immediately start you on IV antibiotics and run blood cultures to find out if its a bacteria or virus. If its a bacteria they can give you a specific antibiotic to help fight the specific bacteria....if its a virus, we just have to wait it out. So, we need to hope and pray you stay healthy for the next few weeks.

The good news is you have 2 weeks "off".  Next Thursday home health will come draw labs so we can check your counts (which they say will probably be pretty close to zero).  Then the following Wednesday they will have home health draw labs again so we can see if your counts have recovered enough to give more chemo the next day.  If they are good enough, we go in for a Back Poke, and a bunch of new chemos that I dont want to think about right now. Its too much to worry about all at once.





A series of photos of you giving me attitude...and
everything in between!
By the time we made it home you werent looking to good. You seemed really pale and you had dark circles under your eyes.  You started the steroid again and have been an emotional rollercoaster. I never know if Im going to be screamed at, cried at, laughed at, or all of the above.  You looked a tiny bit better right before bed, but not much.  Your seemed in a better mood though...hopefully that translates into a good nights sleep for all. Im exhausted tonight.

Wednesday, September 29, 2010

Happy Birthday Wee-mee!

Its been a week since my last entry and a lot has happened. The night you went to the circus dad and I stayed up late putting your birthday present together (a play kitchen). When we got it done we snuck it into your room while you were asleep so you would wake up to it.  It was fun.  I love giving you and your sisters gifts! The anticipation nearly kills me every time.

The cutest kitchen ever! You were super excited!
Birthday morning came and I had to wake you up early cause it was chemo day too. (I know...lame bday present).  Waking you up is a delicate thing...especially on steroids.  We never know if you're gonna wake up whining and crying, or happy, or worse.  So, all of us (mom, dad and sissys) snuck into your room and i started to rub your back.  You grunted an onry grunt and I said "happy birthday, birthday girl!", in the hope that it would cheer you up....it did (thank heaven). You shot straight up in bed with a big smile and we all sang Happy Birthday. Then you rubbed your eyes and did a little double take at the sight of the brand new kitchen in your room....it was cute.  You said, "is that mine?" We said "of course!" and you ran over to it! Luckily you were in a good mood cause I told you it was almost time to go to clinic and you had to come eat your breakfast. You had requested cinnamon rolls, so thats what you got and they were a good start to the day.  I could tell you were still pretty sleepy.

Once we were on our way to the clinic you quickly fell back asleep.  I was a little surprised...you usually dont fall asleep on the way cause of all the anticipation. You were unusually shy that day.  You had wanted to bring treats to share with everyone at clinic (like sissys do at school on bdays) so I bought a bag of candy so you could pass it out.  Once we were there you didnt feel like talking and you were a little shy to share your candy. Mom and dad passed it out for you.  You really had a hard time when it was time to get plugged in.  You were nervous I guess.  I think its the steroid. It makes all your emotions more intense and so I think the usual nervousness and anxiety felt a lot more intense.  You struggled and I felt bad. Once you were plugged in you were ok, but still very shy and quiet.

After you had received all your chemo, and we were ready to leave, all your doctors and nurses came out and sang you happy birthday and gave  you a present! It was sooo nice of them, and made you feel very special.  You were so excited about your gift too! It was a little toy horse named Abby Apaloosa! You said, "I've always wanted one of these kinda horses! Its like Deuce daddy!" It was super cute.  You were totally excited....we had to open up the box right there. I am so bummed I didnt have the camera because it was pretty special.










The rest of the day was pretty low key. Daddy told you hed take you anywhere you wanted for lunch and you said you wanted to drive straight home and have a "cheesy tilla" (tortilla) and play with Ry in your new kitchen. So straight home we went.  You picked up Ry as soon as we got home and played all afternoon.  By the time it was dinner time you were exhausted.  I told you, you could pick anything you wanted for dinner and you picked "chicken tacos with beans" which was actually bean burritos, but for some reason you always call them "chicken tacos with beans." You ate really well but got more and more emotional and upset with each passing minute. You didnt wanna go to Carlys soccer game, so I stayed home with you. I offered to take you to ice cream but you declined.  You said you just wanted to lay on the couch and watch cartoons.  I knew you werent feeling well...who turns down ice cream on their bday?

Saturday night we had a little bday get together with Ry, and Aunt Heather and Uncle AJ, and their kids, and Aunt April and Roland.  It was fun. We did dinner, then presents, then goody bags, then cake and ice cream.  You got a cute new Barbie and a dress-up that matches your Barbies dress, and  Ry got you a bunch of little goodies...one of which was an air horn! I had to take that one away after 5 minutes cause it got to be a little much and all the adults were getting headaches!  You went to bed that night worn out, but happy.

I cant believe my baby's 4!


Presents are the coolest!
Twinners!

Sunday was your Primary Program!  You did such an awesome job.  Your part was the First Article of Faith and you said it perfectly. Grammy and Grampy Shepherd, and even Uncle Josh and Conrad came to see. It was such a good meeting.  There wasnt a dry eye in the room during the closing hymn, "I Know That My Redeemer Lives". You and your sisters did an awesome job.

Sunday night we had dinner at Grammy Shepherds and celebrated your bday with all of the Shepherd side of the family.  You had a lot of fun playing with cousins and opening presents.  You got spoiled by everyone...and loved every minute of it.  Im so grateful you were feeling up to it.

Looking back over this past week I have noticed a bunch of things.

One: You are amazing! How can you be doing so well? Well, I know how. Through the many faithful prayers of all who have prayed for you during this time.  I have been overwhelmed by the number of people who say they are keeping you (and us) in their prayers. I also know of at least 4 people who weekly put your name on the prayer roll in the temple. I know that through this combined force of prayer, you have been blessed.... a lot....and so have I.   

Two: Your an animal! You never stop moving.  My previous thoughts about your ability to judge your strength and adjust your activity level may have been spoken a bit too soon.  After watching you overdo it these last few days I've decided I need to intervene.  Today (Wednesday), there WILL be a nap, and you WILL be taking it easy....whether you like it or not.

Three: The steroids are working... Ive decided I hate steroids.  I hope that it works the way they say it does cause I HATE what it does to my little girl.  The last few days have been pretty busy. Lots of coming and going, and you've been playing with your friends a lot.  Which I thought was good, but the effect it has on your sleep is more than I think I can deal with.  Last night was the worst. You woke up throwing a fit.  I had just gotten up with Tucker, and you were whining and I told you (like I had many times) that if you need me at night you need to call for me nicely and I will come. I told you (like I always do) that I WILL NOT come in when you are screaming and throwing a fit. So, after I told you this I took Tucker in my room to feed him, and not 2 minutes after I started, you started in on a whopper of a fit.  There was nothing I could do.  I was aleady holding Tucker while he nursed so I couldnt yell for you to mellow out till I was done or it would have startled him.  I also didnt think youd hear me through your screams so I did my best to tune it out, but I was pretty sure the neighbors could hear you!  Dad went in and tried to calm you down but you lost it even more...screaming that you only wanted me.  Dad told you multiple times I was feeding Tucker and you'd have to wait, but that info fell on deaf ears.  Once Tucker finished I went to your door and told you I wouldnt come in till you calmed down.  You instantly started to try to calm down, but it took a minute. I went in and talked to you...turns out that whole fit was because you had to go potty!  There were a couple others like it (but not as loud) last night, and I thought the night would never end.  Its so hard to know how to handle these "outbursts" when they are not your fault.  I have to hold you accountable for your behavior and let you know that it is NOT ok to scream and yell and throw fits and be mean,  (and try to help you cope)  but at the same time, I hate to get upset with you about something you cant control. And when its happening, you are clearly out of control.  I cant wait till your off these drugs...only 27 more months!

and Fourth:  I have been so blessed!  When the girls got their back-to-school blessings dad gave you and I one too.  In my blessing he blessed me that I would be able to get by on whatever sleep I was able to get. Whether it was 2 hours or 12.  I have seen that blessing fulfilled.  Over the last 2 weeks your sleeping has gotten more and more difficult. I never know how the night will go, but every morning I wake up ok. I wont say Im doing cartwheels out of bed, but I always have enough energy to accomplish all that I need to during the day. I dont even feel like I need a nap in the afternoon! And anyone who knows me knows Im a woman who not only NEEDS her sleep, I want it.  So the fact that I can make it through the day after a night like last night is something  to celebrate! I am so grateful to a loving Heavenly Father who builds us up and makes us strong enough too bare the burdens that are placed upon our shoulders.  With His help, I know now that I can do anything.

As I write this, you are sound asleep on your bed.  Thats something to celebrate too! Another clinic day tomorrow...better rest up.
How can anyone be mad at this little girl!?

Thursday, September 23, 2010

Week one of DI, not too bad..

What a week this last week has been. With all the buildup from doctors and everyone about how terrible this phase was going to be, I half expected you to be bald, sick, and bedridden by now. BUT, to my great pleasure, it hasn't been too bad...

After you got your chemo I watched you like a hawk wondering when you were going to start feeling terrible.  I definately noticed some of the old familiar side effects of the steroid, but it wasnt un-manageable. You got weaker legs. I could tell because you have been pushing harder on your knees when you climb stairs, and you pull yourself up with the railing as you go. You also quit sleeping again (my least favorite side effect). The steroid makes it hard for you to shut your mind off (grandpa DeSoto told me how it feels since he was recently on them), and then causes you to have vivid, often scary dreams. The docs call them night terrors, but I dont think they are nearly as bad as in Induction phase. Last night I woke up to you screaming and crying for chocolate!! "Why cant I have chocolate, she has chocolate, I love chocolate, its not fair!" you said through tears. It was kind of funny.  You're still totally asleep when your whining, and screaming, and dreaming.  I finally stopped going in your room.It was too hard on my emotions, and patience, to get up a million(literally) times a night. Unless you call me by name, or sound really troubled I dont go in. Ive learned that you are totally asleep and theres nothing I can do but wait it out. Plus you seem to do much better when you are left alone....it seems to aggrivate the situation more when I go try to calm you down or wake you up.

By far the most obvious side effect I've noticed is how tired you are.  I would say you are wiped out by 11am most days, and by the time lunch is over its definately time for a nap.  You are very aware of your physical capabilities and you seem to listen to what your body is telling you really well.  If you dont feel like you can run, you dont. You usually give it a try, then 4 or 5 steps into stop and say..."I cant, wait for me.." I am so amazed at how well you know your body already.  You are such a little goer. You always want to be doing things, so when you are extra tired Ive noticed you adjust your activities to what you can do physically.  For example, in July and August when you were feeling good you were out riding bikes with the neighbors every chance you got, but now that your more tired and weak you play barbies inside, or read books and color.  You are pretty amazing that way.
You WATCHING your sisters jump on the tramp. I knew you werent
feeling too hot cause you never "just watch"

We had some fun this week. You went to 2 birthday parties on Saturday and had so much fun.  Too much fun cause it wiped you out.  You had to go early Monday morning for more chemo. This chemo came in the form of a shot inthe muscle of your thigh (called a Peg shot).  It hurts.  They say that the chemo is thick and that it BURNS! Poor kid.  I chickened out and let daddy take you. You had to get the same shots when you were in the hospital and it was by far my worst memory from that time. I had to pin you down...it was horrible. Dad and I debated back and forth about whether we should tell you what was going to happen.  We worried that if we told you in advance you'd worry and stew over it, but we also worried that you would freak out if we didnt tell you and you had to deal with it all at once.  We ultimately decided to tell you Sunday night. You were nervous, but dad said you did awesome. You seem to do better when we tell you whats going to happen in advance. I think it gives you time to process everything and deal with it before it happens. It also gives you time to ask questions and understand why its important that it gets done. I think you understand better than I do most of the time. You came home in a good mood and even rode Deuce "all by yourself" with daddy that evening.

Showing off your new "One Tough Chick"
shirt. What a cutie patootie!

Definately "One Tough Chick!"











Funny story:  Someone gave me some bath salts for my bday and you asked me what they were. I explained what you use them for and you instantly wanted to try them out. I told you no, cause they werent for when you are washing yourself in the tub, they are for when you just wanna soak.  You have asked several times since them if you can use them with the same answer. So, when you came in from riding Deuce, you smelled terribly of bug spray and sunblock so I told you, you had to bath.  You said "ok, mom, but I just wanna get soaked. Please can I get soaked this time?" It took me a second to grasp what you were saying, but once I caught on I had to laugh. Of course you can get soaked!  If ever there is a day when you've earned the right to get soaked, its the day you get chemo shots in your leg!

Tuesday was daddys birthday and we took him his favorite burrito from Rancheritos for lunch.  You were so excited to see him and give him his card. On the way home from that you fell asleep in the truck. You were so tired I had to hold your head up till we got home.  That night we got ice cream after Carlys soccer practice. You got a "chocolate dipped in chocolate" cone, and were so proud of yourself when you ate it all gone! Wednesday we got a phone call from Hope Kids that they had some tickets for you and dad to go see the circus!! They called at 6:20 and the show started at 7 so you had to hurry, but you made it in time and seemed to have a blast. Your favorite part was "the girls who do cool tricks hanging on the swings." You also loved the elephants and the motorcyle guy on the tight rope.  Im so glad you were feeling good enough to go.  I cant believe how much you can tolerate and still keep going. It makes me tired just thinking about it.
Your seats at the circus. Dad said he
got a couple of nose bleeds
Big elephant on a little stool

Thursday, September 16, 2010

First day of Delayed Intensification

The sunrise from our back deck.
What a really long day, but thats just how it goes sometimes.  I was up at 5:30am (it was a beautiful morning) to start getting everything ready so we could leave the house by 7am! I waited until 6:45 to get you out of bed because you couldnt eat breakfast before we left. I thought the less time you spend at home the easier it'd be. Last night you picked out your "One Tough Chick" shirt (with your matching pin), some shorts, and your Twinkle Toes. You were feeling like hot stuff I think....for a minute.  I could tell you were getting nervous about todays treatment because you werent your usual talkative self.  You hid behind my legs, and wouldnt talk to the nurses. Usually your a lot more engaging and even a bit of a show off.  The closer we got the more emotional you got. It wasnt horrible, but just enough to let me know you were nervous.


One Tough Chick shirt. (why cant i rotate these?)
We got there just after 8am, checked in early for the RTU, and then headed up to the clinic.  You were riding on daddys shoulders and didnt wanna get off even for the elevator! We got to clinic and we were one of the first patients to arrive so you and I set up the chairs in the waiting area and started to read some books.  It always mellows you out  to read a few books. They have a hat rack in the waiting area where you can pick a hat to take home.  You've never seen any you really liked until today. It looked like someone had brought in a bunch for donation just recently because there was a big bag full of them. I think someones grandma knitted them because they smelled like my Great Grandma Greens house. I love that smell.
You trying on a mask in the "monster faces" book.
Soon you got your vitals taken and we were back in our room waiting for you to get plugged in.  We talked to a bunch of doctors about all the chemos and the side effects, and what to expect over the next 8 weeks.  He said your counts will probably get to zero within the next few weeks, and that your hair will most likely fall out sometime during that time period too.  He also said you would start feeling more and more crummy each day as treatment continues and the chemos build up in your system. (heavy sigh) You were very patient, Tucker was extra nosiy and talkative today though.  Very unlike him, but it turned out to be a good distraction for you.  You were perfect for the nurses while they plugged you  in and took some blood.  Then they told us they hadnt gotten your chemo yet, so we'd have to go down to the RTU (rapid treatment unit) first for the Back Poke. Then come back up for the chemo. (double heavy sigh) When they said that, I knew we were in for a long day...

We could barely hear the docs, Tuck was so noisy!
Watching Shrek the Third.. a good
distraction cause you were anxious to
get it over with.
RTU went well, but seemed like it took a long time. We watched Shrek the Third while we waited, and then I carried you back to get your sleepy medicine.  The nurses distracted you with a big purple baton that had water, and glitter, and fishies in it. The anesthesiologist gave you some meds and you got droopy, then he "gave your tubey a drink of milk" (the sleepy medicine looks like milk), and you were out. Its a strange mix of feelings to hold your baby while she gets put under anesthesia.  On the one hand its wonderful that you dont have to be awake while they inject your spine with chemo, on the other its horrible to feel you go limp and lifeless in my arms. Then have to lay you down on the hospital bed and leave you alone in a room full of drs and nurses.  I hate that part, but at the same time I'm always glad when you want ME to carry you in (instead of dad) because then Im there for you till your fast asleep.  Its emotionally exhausting but worth it.

You woke up really funny.  They came and got me to help them wake you cause you were struggling a little.  You were OUT! I rubbed your back, talked to you, and offered you chips...you didnt budge.  I kept at it, then the nurse tried to take your temp, and you shot straight up in bed and smiled at me. You said, in a very slurred voice, that you wanted to sit up so the nurse lifted up the head of the bed.  We were asking you questions and you were moving really funny.  You finally picked what kind of chips you wanted, but had a hard time eating. Me and dad couldnt stop laughing...you were so funny.  I took some video of it. 

video



Once we were ok'd to leave we headed back up to clinic so we could get your chemo.  You got Anzemet first, which is an anti-nausea drug they give to keep you from getting sick. You got Doxorubicin next, which is the reason they give the anti-nausea medicine. That took about 15-20 minutes.  Then you got the Vincristine. Which only takes about a minute through your port.  Each medicine doesnt take long to get, but by the time they get it, and set it up and actually administer it....we didnt leave the clinic till 1pm. Needless to say we were all exhausted...you said you wanted to hurry home and have breakfast.  You wanted some Frosted Mini Wheats "so bad".  Dad and I were happy to oblige. 
Getting Anzemet, and snuggling
Tucker-man.
Getting Doxorubicin. Notice the plastic around
the chemo, its light sensitive.
Getting the sticker taken off your port access.
You HATE this part, but look at you be so brave anyway!
Stickers off! just need to unplug and then we
can go home...Yeah!


I am always amazed at the hospital staff and the way they run things.  They have Rachelle (your favorite "nurse") who is a Child-Life Specialist.  Her whole job is to help kids cope with whats going on.  Whether its keeping them distracted with games and toys, or calming them down and validating their feelings, or empowering them by giving them choices. You quickly fell in love with her and knew she was on your team.  You always look forward to seeing her.  The nurses are amazing too.  They have a way of being caring, and also tough.  They always ask how our WHOLE family is doing, and how everyone is coping. And theyre genuine.  I dont know how they do it, but Im grateful they do!
Rachelle, the "toy nurse"
 I found myself watching you excessively all day today,  searching for any sign of discomfort, or sickness.  I did see some, but not near as much as I thought.  You were definately more tired after todays treatment, and you complained more of "wobbly legs", and back pain.  BUT you still wanted to play with your friends when you got home...so I let you!  I guess you better do what you can while your up to it. 

We ended the day with your first dose of steroids and prevacid, and you were nervous, but you did great.  Your always nervous to try a new medicine, but you never cease to amaze me.  You are so brave and trusting, and patient, and I love you so so much...I dont know how you do it.

Wednesday, September 15, 2010

Friends...

I decided against the fair. I tried thinking about what would be fun for you to do before chemo starts again. I had all kinds of ideas, but I finally decided that your most favorite thing in the world to do is play with your friends. So, you played ALL DAY LONG!

Your home health nurse Scott came over this morning to draw some blood so we could have your counts checked to make sure they were good enough to get chemo tomorrow.  Your friend Ry came over and watched.  You wanted to lay in my lap while you got "plugged in", so Ry sat behind you on the back of the couch.  You were so cute.  You laid there patiently and explained to your friend what was happening, and what Scott was doing step by step. Scott said you were the bravest little girl hes ever met. You said, "Yep, I'm One Tough Chick!"  After it was done and you were "unplugged" we got a Princess and the Frog bandaid out and put it over your port.  Ry thought it was pretty cool and wanted a bandaid to put over her pretend port.  Too cute. You and Ryan were off and playing dress up in your room before Scott even left.  Funny how resilient you are, and how quickly you've accepted your new way of life.

Good friends!
You played for several hours with Ryan. You played dress ups, people's (Little People), princesses.  You played that I was Ryans grandma, and that Ryans grampa Doug was at work, and that I was taking care of you because your mom and dad were dead! I started to fake cry because you had killed me off, you said, "Its ok mom, your only dead for pretend!" Pheww...thats a relief!  You played spy, at least I think thats what you were spying on me for, and you had lunch (mac and cheese) on the deck.  It was fun to watch you play and pretend.  You and Ry get so engrossed in your pretend play that I can walk in the room and watch for several minutes before you even notice Im there.  Then when you do notice, its like you've all of a sudden snapped back from a whole other world.  Amazing...

Some of our neighborhood friends


This is not your bike...I dont know why,
but no one ever rides their OWN bike!

You on Ry's bike, Ry on your bike. Kinda blurry...
This evening we went out to ride bikes in the front yard. Its kindof a neighborhood thing to do this time of year.  There were about 11 little kiddos out playing.  Its fun to watch.  When the mosquitos came out, we went in and I decided a day like today is best ended with ice cream. So off we went to Paces.  I was surprised you ordered ice cream, cause you usually go for fries, but you did.  Judging by how much was on your face I'd say it was pretty good. 

We got the call that your counts were great and you were ok'd for chemo. Good news, but it brought the pit right back to my stomach. I hope it goes ok. You have to get a bunch tomorrow.  You'll get Vincristine, and Doxorubicin through your port, you'll start taking an oral steroid and you'll get a Back Poke.  Thats what they call it, its actually a shot of chemo in our spine.  You've had a bunch of those...you call it sleepy medicine because they put you out for that one...thank heaven.  Its a lot for a little body to take, but you can handle it.  You've had all those drugs before, except the Doxorubicin.  That one could make you lose your hair...we'll see.

Tuesday, September 14, 2010

Good times...

You LOVE riding deuce! You think
your such hot stuff!
We've really been busy having a lot of fun these last few days.  As the last 2 weeks of "time off" have gone by you have gotten progressively stronger.  Which has been a pleasant surprise because you were already doing so well. I have noticed that you dont have to push on your knee to help you get up the stairs nearly as much as usual and you havent needed a nap nearly as much either.  You have also started sleeping better at night (hallelujah)! You hit the ground running in the morning and dont stop till I make you climb in bed.  You go to bed every night saying, "but Im not tired, mommy". Then you fall asleep (literally) as soon as your head hits the pillow. Its been so fun to watch you make the most of this time. I know you've overheard (and listened) to me talking to friends and family ask about your next round of treatment, and I think you know what lies ahead in the coming weeks. I usually tell you whats going to happen at clinic the night before.  You seem more calm and brave when you know what to expect. I've noticed if I tell you too soon you just worry and stew about it.


Notice the snow boots..very stylin
  We had all of our family (from dads side) over for dinner and cake and ice cream on Sunday. We celebrated Grampa Scotts, Parker, Carson, and Conrads b-days.  It was a good time for you to be able to play with your cousins. Aunt Ali made a pinata and you were the first to hit at it. You were even fast enough to get candy yourself (with your weak legs you usually need help).  It was a crazy evening because we had about 20 people at our house, but it was a lot of fun.  When everything was winding down, and I was cleaning up, I called you in the kitchen to get the cake and ice cream washed off your hands and face (and forehead), and I noticed you had a couple of good sized slivers in your hand.  I told you  to come with me to the bathroom so we could get them out.  You were really nervous and you were saying, "Im ok mom, Im ok mom, Im going to be ok, mom." You were saying that and, "Its not hurting me, I can do it, I can be brave.."  I had a major flash back!  I was right back to the hospital and that first phase of treatment.  It was rough.  Its so amazing to watch you be so brave and cope so well, but at the same time, it really stinks that you HAVE to be so brave.  It was a quick reminder of where we've been and gave me instant anxiety of what we have yet to go through.

The birthday boys: Grampy Scott,
Great Grampy, Parker, Conrad, and Carson

Cousins, Sissys, and cake!
The Pinata and You!


Carly rocked the pinata!
















And the mad dash for candy begins!! You wasted
no time getting in there. I think you knew you had to hurry
up with this group if you wanted some candy!
Tucker had a dr. appt yesterday, and I noticed the nurse had an orange bracelet on (orange is the leukemia awareness color) so I asked her what it was for. She said her grandson has leukemia and it turned out he has ALL too!  We got to talking and she said her grandson is in the Maintenance phase now.  I told her we were starting Delayed Intensification on Thursday, and she groaned and said. "oh no..., if you can make it through that phase it'll be smooth sailing." Needless to say that pretty much dashed all my hope of you sailing through that yucky phase like you have the last 2.  I am still cautiously optimistic, but EVERYONE says its really bad. We'll make it through it though.  Dad'll be ready to give blessings and that'll help.


Aint she a beauty!
Yesterday evening we went boating on the new (1972) boat we've recently acquired.  It was so fun.  Daddy was first in the water to try skiing (on one ski). You were in charge of the flag and so I was explaining you had to hold the flag up whenever dad fell.  You were all excited until dad actually fell.  I felt so bad, you had big ol' aligator tears, you were worried your dad was hurt!  I forgot to tell you that was part of the game, you fall and get back up.  It was sweet to see the instant relief on your face when I told you he was ok, and he was actually having a lot of fun.  Grampy DeSoto happened to come in town and call just a couple of hours before we left to go, so we invited him and he came boating with us. You were so excited to see him you ran up and jumped into his arms and gave him a big hug!  I think it made his whole day. You even decided to go on the tube with daddy!  You were nervous but new you were safe if daddy was with you!  You were waving, and laughing and bouncing around behind the boat...it was so cute. Im SO MAD I forgot my camera!! When you got back on the boat after tubing you said, "Mom, did you see me? I was so brave, I was One Tough Chick about tubing too!" You said it like you were surprised at yourself, like you couldnt believe you had just done that. Ive learned for myself over the last 3 1/2 months that you can do ANYTHING!


Im so torn about what to do with you these next two days before your chemo on Thursday.  On the one hand I think you need to get as much rest as possible, and on the other hand I think you need to do whatever you want, and go a mile a minute, until you are forced to slow down. I'm leaning toward the latter right now.  Hope Kids is having an activity at the State Fair tomorrow morning.  We can get in and even ride some rides for free!  Im thinking we'll go...it'll be a fun way to celebrate your last day of freedom for awhile.

Thursday, September 9, 2010

Duh! The Blood Drive...

I cant believe I forgot to mention the Blood Drive!

Not long after you were diagnosed dad and I were talking to a good friend (Jill Bott) about how we never realized how important it was to donate blood.  Dad had just given blood at a Stake blood drive and said he really hadnt understood where it was going at the time, but that he would always be first in line to donate from then on...now that he knew how much of a difference it really makes.  It really does save lives!

So, Jill took that comment and ran with it. (for which we will be forever grateful) She came over and asked if she could do a blood drive in your honor!! She knew me and dad were pretty busy with your treatment at the time so she said she would do all the work.  She had a lot of fun ideas, and plans for how to advertise it and get the word out.  It turned out there was another Stake blood drive scheduled for August 5th, so she called the people in charge and asked if we could do yours then.  Everyone agreed and it was a HUGE success.  Jill had the blood drive put in the city newsletter and on the city marque.  She also had it put in the newspaper and sent out e mail invites.  I put it on Facebook, and sent out e mail invites.  We were overwhelmed with the outporing of love and support from the community and friends and family!

The blood drive was scheduled to run from 4pm-9pm, but they still had people coming until nearly 10 when they started turning people away!  We even heard they had to call in reinforcements from as far away as Provo to help the workers with the number of people that kept coming.  The blood drive workers said they had only 40 units of blood donated at the last blood drive in our stake, but that at your blood drive they got a whopping 120 units of blood! They said it was the biggest blood drive they have done so far this year!

We will be forever grateful and humbled by the amount of people who were so willing to give their time (some waited hours to donate), and their money (a donation jar was set out and people were very generous) to help a little girl in need.  It was such a fun way to "pay it forward". I hope that when you're old enough you'll donate blood too.

Jill did a Powerpoint presentation about donating blood, and about your story, to show at the blood drive. Ive posted that and some pictures she took.


Daddy donating...Alyssa watching




Mommy donating...Alyssa and Carly watching

Lacy, Hallie, Danielle, Mandy and Grammy
Donation table with your picture

Wednesday, September 8, 2010

Waiting...

So, now that were all caught up with the past on your blog, we can focus on today.  Today is a good day because you are happy and healthy (other than the cancer). I am nervously counting down the days until your next phase.  Its called Delayed Intensification, and its supposed  to be pretty bad.  Like the first phase, maybe worse.  They say thats when you'll lose your hair, and they fully expect your counts to get  to zero!

I hate, hate, hate the thought of watching you regress back to being sick, and I worry that you'll retreat back into yourself again.  I am doing my best to focus on how well your doing today, and enjoy this 2 week rest until "the big ugly" starts on Sept. 16th. Only 8 more days...

Who knows...maybe you'll breeze through this next phase like you have the last two.  Maybe you'll keep your pretty hair and continue riding your bike after treatments....probably not but I hope.  Actually, I wouldnt be surprised.  You have such an amazingly strong body!!  The doctors and nurses, even, are amazed.  They told us its not uncommon, for kids going through what you are,  to be in a wheelchair because they refuse to walk from all the muscle weakness.  We met a little girl at clinic named Daphne.  She is on the same treatment schedule as you, to the day, and she was diagnosed almost 3 weeks before you were.  She has had what the docs would call "normal delays" because of other issues.  For example she was in the hospital for a whole other week because she got a fever and her counts were zero.  She also broke an arm, and a leg because of bone weakness from the cancer.  So many things we havent experienced, and I am so grateful. I look forward to the day when you get your patriarchal blessing. Im so interested to hear what it says about the strength of your physical body.... and its amazing ability to ward off disease.  You must be on this earth for a very special reason.

Some pics of what we've been doing before you start the next phase...
Taking care of Tucker-man

Playing with cousins and friends..


Takin naps...



Getting tickled by dad...
So much fun we've had... Now its off to run errands!

Consolidation and Interim Maintenance: The 2nd and 3rd phases of treatment

Ok, so you got your port placed on June 24th and all went well. Your recovery was a little more bumpy than I expected.  All the docs and surgeons made it sound like no big deal, but I guess compared to some of the other surgeries they have to do, it was no big deal to them.  You were funny because you had a small incision on your neck, and a larger one on your right side over your ribs, and the one that bothered you most was the one on your neck.  You would walk around with your head cocked to the right side constantly. We had to help you straighten your head up and it would hurt because you had a kink in it form always leaning it to the right.  You would say, "Im ok, Im ok". Which was actually something you said a lot.  The nurses were always amazed at your incredibly advanced coping skills for someone your age.  You would be nervous about a procedure but you would hold perfectly still and say, "Im ok, Im ok." It was amazing how well you dealt with all the pokes and prods and tests and treatments.

The port surgery marked the end of Induction phase and we were looking forward to a less intensive phase of treatment called Consolidation.  You still weren't feeling great, but Grandma and Grandpa were coming to visit and that proved to be a welcome distraction. It also proved to be the beginning of your "return to self" which was a wonderful time.

Silly grammy! You actually took this picture. (Sorry mom, had to post it)

The first real milestone was when you got to take your first shower.  We had to wait a week after the surgery for your stitches to heal but the day finally came.  We were both so excited...you couldnt wait to get "all the way wet".  When it was all over you said, "Oh...it feels soooo good to be all the way clean mom!" with a big heavy sigh and smile. 
Yea for showers!
All the way wet...
Feels soooo good to be clean!
The next milestone is one that brought tears to my eyes. It was when you started to "try" to do thing you used to. Things like jumping on the tramp with friends...
video


The next milestone was that you were actually up to participating in the 4th of July festvities.  I was so glad.  The 4th has always been a favorite holiday of our families so I was grateful you were up for it.  We went to the parade in the morning, and then the activities at the park, and then you even stayed up for the fireworks which we watched in the backyard.  It was so exciting to watch you attempt, and then be successful at all your favorite activities.  It was like watching you take your first steps or say your first words.  It was a relief and a joy to watch you return to your old self.
Watching the parade...
Activties at the park...
 Another fun thing to watch was how much your puffiness went down each day...it was amazing!

Picture taken June 18th




Picture taken July 25th


Picture taken around Aug. 13th


















Every day you seemed to get stronger and have more energy. We had a few minor bumps in the road with fevers in June.  Every time you'd get a fever of 100.4 degrees that lasted at least and hour, or any temp of 101 degrees or higher, we had to take you to Primary Childrens emergency room. They would run blood tests to check for a bacterial infection and then immediately start you on IV antibiotics. If your counts were good (above 500) then we would get to take you home. If they were bad (below 500) then you'd have to be admitted to the hospital.  Luckily your counts were always good enough that we only had to spend a few hours in the hospital getting the IV antibiotics and some IV fluids then we got to take you home.  The only catch was that if you still had a fever after 24hours ( the antibiotics only lasted 24 hrs) then we had to bring you back for another dose of antibiotics. Which only happened once.  You were always a trooper too.  You were upset to have to go, but you dealt with it really well and just kinda hung out and waited patiently. 

Over the course of July and August you gradually got better every day.  We tried to soak in as many fun activities as we could while you were feeling well...never knowing what was around the corner.  We went to Pineview Resevoir (the beach, you called it) with some friends, and we went to a couple of movies, and to the park.  We also participated in a few Hope Kids activities. Hope Kids is an awesome organization for families of chronicall ill children.  It provides activites for the whole family at no cost.  We went ice skating at the Ice Sheet in Ogden.  We also went to a quarterly birthday bash for all the Hope Kids who had b days in July, August, or September.  You even got very nice gift (American Girl doll clothes) from the volunteers.  The B day bash was at a Classic Fun Center in Sandy and our whole family had a blast!
What a doll face you are!

 At the B day bash...Thanks HopeKids!











Tea party with your BFF Ryan


In f ront of the temple...












We got a little nervous when you started Interim Maintenance because the docs told us that as long as your counts were good they were going to escalate one of your chemo doses each time.  They said that its pretty common to get sick from that chemo (so common that they give the chemo with a dose of 24 hr anti-nausea medicine), and that most of the time it gets worse as the dose increases.  I was heartbroken because I DID NOT want to see you get sick again after so may weeks of improvement.  Little did I know how tough and strong your little body was!  Each week we would go and they were able to increase your dose each time and I would bring you home and worry that you were gonna be sick, but nope....you came home and hopped on your bike and rode around with your friends!! Even on the days you were put under with anesthesia for your Back Pokes! It was amazing to watch.  You werent gonna let a little thing like surgery stand in your way of having a good time. I just kept waiting for you to start struggling, but you continued to amaze me.  You had only a few of the side effects.  Your legs became gradually weaker, and you got more and more tired.  The legs never slowed you down, and the tireds were nothing a nap (or quiet time) couldnt cure. 

I am so blessed to have such a faithful kid! It has been so amazing to watch you endure the hardships that have come, and deal with them so bravely, Then at the same time be able to humbly and faithfully ask for a blessing in the middle of the night when you dont feel well.  I have held you in my arms during those night time blessings and felt your body literally melt into my arms as daddy blessed you with peace and comfort.  Your whole body would relax and you would fall asleep and stay that way till morning.

McKall is back!