Thursday, October 28, 2010

Playdates and Tinkerbell

We did some fun stuff this week. Since your counts were good we actually went out a little bit. 

On Monday we went to Kohl's and bought me a much needed pair of pants...you were being super cute and sweet, and charmed the pants off the ladies at checkout. The lady behind me even gave us her "30% off your entire purchase" coupon! Thanks "lady behind us"!

Then Tuesday we had a play date with some fellow Cancer Friends! I met a mom at clinic that invited me to join a group of moms of cancer kids that meet regularly to chat and play.  They have a group on facebook called Utah Moms of Cancer Cuties.  It was fun for me to meet with other ladies who have the same worries and experiences as me, and I think you had a good time playing with some fellow baldies. When I told you where we were going, and who would be there you said, "Bald kids with cancer like me?? Do they have the kemia too?" When I said yes, you were pretty excited. Until we got there...you were feeling kind of shy and stayed close to me, but  you didn't wanna leave when it was time.

You were being silly with all the fun toys at our play date.

You, and your fellow cancer friends!

Wednesday we had a ward dinner and trunk or treat. We didn't dare take you indoors with all those people so I took Alyssa and Carly to the dinner, and then you, dad and Tucker met us there for the trunk or treat. I felt bad telling you you couldn't go, but you seem to understand.  I don't know why you had to grow up so fast, but I know you have...your amazing.  When you came you were pretty cold, and very shy!  Everyone at church makes a fuss over you when they see you and it makes you uncomfortable.  You would rather blend in and be "one of the shepherd girls" like you used to be. I couldn't get you to say trick or treat, or even say thanks.  You just buried your face in my legs and hid. Everyone was overly generous with their treats, though, and you came home with a Dora backpack full. 
You were ready to go, but had to wait until the trunk or treat
 to come.  You are such a good little girl!



Everyone in the neighborhood except you in this picture.





You can tell by your little face that you are feeling
a little overwhelmed and shy.


Today was a special day at clinic...Tinkerbell was there! She was the cutest bald Tinkerbell I've ever seen! Ok so it was you in your costume, but you had everyone at clinic fooled!


What a cutie patootie!
 Clinic was fairly uneventful...which was nice. You had your counts checked and your ANC is only 700. (heavy sigh) Looks like we'll be on lock down again.  We'll be giving you chemo at home the next 3 days and so it'll probably dip down even lower. They say its not uncommon to need another transfusion during the next couple of weeks...guess we'll see.




They always have fun little crafts in the waiting room.
Today it was x-rays cut out in different Halloween shapes
that you can decorate with glitter glue.

Daddy reading books while we wait for the doc.

Dr Fluchel checking your tummy...it tickles!

Chemo time...Cancer stinks!

Soooo sleepy...but you'll never admit it!

Asleep before we got out of the parking lot!
The good news is you don't have to go back for treatment for 3 weeks! Unless of course you need a transfusion...they'll be checking your counts each week to see where you are.

We asked doctor Fluchel what he thought about doing sedation with you during your back pokes and he seemed a little hesitant. (We can sedate you and do it in clinic and its faster, but your not all the way asleep like you are in RTU) He suggested we do it in the RTU next time, then we won't need another for 3 months and can try sedation then. He seemed more comfortable with that so thats what we'll do.  Everyone I've talked to has said how fabulous sedation is over being put all the way out, so I was surprised when Dr Fluchel was hesitant. Now I dont know what to think...

I hate that every time we go we get a different set of answers and a different set of suggestions depending on the doc we see. Some are really laid back (like your doc Fluchel), and others are more strict. Its frustrating sometimes cause I never know if I'm a worry wart or not as concerned as I should be. I don't want to be a crazy person, but  I also don't want to keep you in a box all winter either! I am growing tired of the emotional roller coaster. Your doing so well and I want to focus on  the positive...I just hate that I never know whats going to happen. Alyssa came home from school yesterday and said that there was only 14 kids in her class, because the other 10 were home sick...mostly with the stomach flu. Awesome. I make you and your sisters sanitize all the time and I even send sanitizer with your sisters in their lunches so they can sanitize before they eat, and we've been healthy so far. I just dont want you  to have to stay in the hospital again, and if you get a fever with low counts you'll be admitted for 2 or 3 days no matter what. Just need to keep praying for health through this winter...were doing all we can here and what will be will be.

Monday, October 25, 2010

A long day, but a good one!

We took you last Thursday for the first treatment of the last half of DI. I worried how you'd do with no food in your belly, and a little bit of lingering appetite from the steroids, but you did awesome! You were pretty nervous when you got plugged in, but were ok after that. 

I thought it was going to be a long day...I was right. We left the house at 9am and didn't get home till 4! When we got up to clinic they got us in a room pretty quick because of your RTU appointment. They accessed your port with a needle we brought from home. You like the home health needles better because they lay flat against your skin, and the Primary needles have a clear plastic top that pokes out and bugs you. I thought that since you were going to have to stay plugged in till Sunday you'd do better with the flat one. We met with doc Frasier (hes a research doc, but has to do clinic days too).  He went over all the info about your new drugs and side effects. I hate that part cause it puts a pit in my stomach. I hate not knowing how you'll react. Its anxiety... a lot of anxiety. As we were talking to the doc he said "one more in-office treatment till Maintenance" ....WHAT?! I thought we had 3 more...I thought there was 4 weekly treatments in the last half  of DI? The doc said only 1 more in office, plus the three we give at home! I was so excited!!! I cant believe it!! One more in-office treatment and then 3 weeks off! Your due to start Maintenance on Thanksgiving! (they said they'll probably do it the day before Thanksgiving) I cant believe were nearly there!

So here's what your treatments are like this half. On Thursday you got a back poke, then we had to come back up to the clinic for chemo.  You got fluids through your port first(40 mins) cause the new chemo can be hard on your kidneys... so they want you well hydrated so you can pee out the chemo quickly and it doesnt sit in your kidneys. Then it was the Cytoxan (30mins), then anzemet (anti-nausea 5 mins), then Ara-C (3 min). You also got a prescription for 6TG that you have to start taking orally at night.

This was your first visit without hair. I tried to get you to wear a headband...I don't know why. I just want you to. You wore it till we got to the hospital then took it off and left it in the car. On our way downstairs from the clinic to the RTU 2 people comment on how cute our "little boy" was. I was totally bugged. I don't know, maybe it was protective mother instinct, but how could anyone think my cute baby girl was a boy!? To be fair you had just a HopeKids t-shirt on with a long sleeved white shirt under and jeans, kinda boyish I guess...but your shoes were bright pink and sparkly! How many boys wear bright pink and sparkly light up shoes? I really don't know why it bugs me so much..but it does.

I have to admit that I have a hard time when you go with me in public. I love that you can go places with me...Ive missed my little friend at the store and running errands. But I hate all the staring eyes, and pitiful looks! I wanna tell people "Shes fine, shes a normal kid just like yours...quit staring at my beautiful brave little girl!" I know how it is though...I would've looked twice too. Its hard to see a bald kid and not wonder what they have and how they are doing.  Its hard to see a sick kid, but its harder on the other side....with people looking and wondering.  I just don't want YOU to feel different. I want people to notice you for your cuteness again, not for your sickness. Oh well I guess. No use stressing about something I cant control...this too shall pass....eventually.

After we got home from clinic on Thursday you pretty much laid around all day.  You seemed totally wiped out. You slept really good Thursday night and even slept till 10am the next morning! That was definitely a first for sure!!  You laid around again Friday morning, but by the afternoon you were out playing again.  You were even mad when I had to call you home to get chemo!
Still asleep at 10am! Even I cant sleep that late!


Chemo at home is a strange experience.  I cant believe I have chemo in my fridge! Its such and indescribable experience to give you baby chemo your self.  Its not right. I don't like it, but its WAY better than trudging down to clinic 4 days in a row. I was mostly worried about de-accessing you. You hate getting the sticker removed and you have a hard time sitting still. It was daddy's turn to stay home from church with you and so he was the one who got the task.  He gave you your chemo, then de-accessed you without a hitch! He said you were nervous but you did really well.  I think the wrapped present was a good motivation to hold still. We wrapped a floor size Toy Story coloring book and some markers up as a prize for being good while getting un-plugged.  Whatever works...plus, you earned it!
Dad is holding your shirt up. You kept trying to pull it down
cause  you can feel the cold medicine under your skin!


You have done pretty well with being accessed.  You hate it though.  It took the first few days to get used to, but then you realized you could still do all that you wanted to while your plugged in. Hopefully next week you wont have the learning curve again.

 As far as side effects though, you are amazing.  Its like nothing to you.  Your not sick or anything!  Daddy says maybe after next week you will, once you have more in your system, but I don't know.  I hope not. Your such a beautiful brave little girl!  A fellow cancer mom posted a neat song/video on her blog that I think sums you up...and had me in tears!
http://youtube.com/watch?v=cyVzjoj96vs

Wednesday, October 20, 2010

Woo Hoo!

Scott came over today and drew blood so we could see if you made counts....drum roll...YOU DID!! Woo Hoo! Your ANC went from only 100 to 1700 in only a week!

Sideways picture of Scott from your point of view.
You took this pic while laying on your bed waiting to get unplugged.
I am consistently amazed at your super strong little body! I cant believe how well you deal with all the pokes and prods, but also all the poison/chemo thats gets put into your tiny body...what a trooper you are.  What a blessing!

You were so excited you said "Woo hoo! I knew it, I knew it, I knew it!" You sure did. You've told me several times over this last week that your counts were getting better...I dont know how you know, but your always right. We have a clinic appointment at 10:30 am, and an RTU appointment at noon. Hopefully all goes well tomorrow and you dont have too hard a time going without food until after your back poke...
Woo Hoo! I knew it, I knew it! I think Ry thought we were crazy
for doing our silly happy dances... but she clapped and
seemed excited anyway...even if she didnt know what for!

Monday, October 18, 2010

Amazing people...Amazing things

What an amazing weekend we had.  Saturday was a big day. 

Jaylene...a saint!
There is a wonderful woman in our ward named Jaylene Page.  She was baptized and went through the temple not too long ago.  She teaches in Relief Society and I always look forward to her lessons.  She is very humble and excited to learn all she can about the gospel. Well, this sweet lady came to us in August and asked if she could put together a fundraiser for our family to help off set medical costs. I have to say that its not always easy saying yes. My pride (I guess its my pride) wants to say no thanks. I feel uncomfortable in situations where I have to accept service.  Its humbling to be on the receiving end, but I guess thats a good thing.  I've learned a lot from the generosity of those around us. 

Anyway, when Jaylene came over, she said she had a bunch of ideas.  She wanted to do donation jars in businesses around town, and then have a boutique with a raffle and  vendors to earn money. She told us she would take care of everything and all we had to do was nothing...except come to the boutique if we could. Well, she had had the donation jars out during Sept. and Oct., and she sold canning funnels as a fundraiser, and she had tons of local businesses donate gift cards, and merchandise for the raffle.  She also had a lot of local people donate things for the raffle as well.  She charged $3 for one raffle ticket or $5 for 3. Then she had a lot of people sign up to come sell stuff (vendors for Scentsy candles, Pampered Chef, jewelry, craft and other homemade items).  She charged those people $30 dollars to participate and collected that money for us.  The response was HUGE to say the least.  When we went over there on Saturday morning I couldnt hardly restrain the tears.  There were so many vendors she had to move furniture out of her house!  The vendors filled her upstairs and down, and they even had a bunch outside.  The weather was beautiful and couldnt have been more perfect!  She had so many things donated for the raffle that they did give aways every half hour, and for a while every 15 minutes! It was so amazing, and so humbling, and so overwhelming that so many people would give of their time, and their talents, and their money (especially in these tougher economic times) to help our family.  I dont know how Im ever going to repay the kindness shown to us.  It will take a lifetime of service and I look forward to the task. The total money raised (so far, theres still more trickling in) was $2300! What an amazing response. What amazing people. If I could think of a word stronger than amazing that would be how I feel.  Tonight for family home evening we took her some dinner.  A small way to give back, but she seemed to appreciate it. Thank you Jaylene!
Carly out front...there are still more people setting up!
There are so many vendors out here I couldnt
get them all in one picture.
This is the other side of the yard...
Indeed there was...
You can see books on the right, jewelry in the
back, and the raffle stuff in the back left.

Hairbows and crafts on the left, avon to the right.
And then refreshments and a silent auction
around the corner.

The raffle prize table.
You really shouldnt have come with your counts so low,
but I wanted you to see all that people were doing for
you.  You were happy with a cup full of potato chips!
Alyssa getting some refreshment.
Even more downstairs..Alyssa was eyeing some bracelets.
They had the cutest aprons and bibs for sale!
You can see by your wrist that people were spoiling you!
The hat I bought for winter, but you love it so much you
havent hardly taken it off since.  You call it your piggy
tail hat cause its got two braids on the sides.( the
things your waving)

After we left the boutique we came home and rested for about an hour or so until Danielle and Ryan (daddys cousin and her hubby) showed up.  They were bringing 2 of their HUGE draft horses and a wagon over to give us a ride.  Also invited were Aunt Jamie and her kiddos, Lacey and her kiddos, Grammy and Grampy Shepherd, Great Grammy and Grampy Sanders, and Aunt Shelley. I sometimes forget how much you love animals!  It was so fun and you took right to Ryan and Danielle. They even let you sit up front and "drive the horses!" You were so excited, and thought you were pretty hot stuff.  It was so nice of them to go to all the trouble to bring the horses and wagon over so you could have a ride.  We were gone for about an hour long ride and had a good ol' time.  You didnt want Ryan and Danielle to go!  You've asked every day since when we can do that again. Hopefully soon! How did we get so blessed?! Seriously...We are surrounded by such good, kind, and giving people.  I dont know how we got so lucky!
You look so cute in your piggy tail hat!
You said you were bein a rockstar while you waited for
Danielle and Ryan to get the horses ready.
You got to pet the HUGE horses.
Too many people to fit in one picture!
Almost time to go...
"Im kinda nervous aunt shelley. Will you hold my hand?" You were
so funny, you kept playing with Shelleys hair, running your fingers through the back.
You riding up front...
You had so much fun...you can tell by those sleepy eyes!

Counts, Chemo, and Surgery...Oh My!

Well a lot has happened since my last entry, so Im going to divide what would be one really long post into two medium sized posts.

First of all it has been almost 3 weeks since you had chemo! What a difference 3 weeks can make! You look and act like your feeling better every day.  Your color is good. Your spirits are up, and you are riding your bike!! Woo Hoo! I love that! It makes me so happy when I get glimpses of the old WeeMee.  You definitely still tire easily, and you still have a good size appetite, but thats easy stuff!

Lunch outside with sissys...what a good day!
Your last chemo was on Sept. 30th. You were supposed to have the 7th off and then get chemo again on the 14th, but (to my complete shock) your counts had dropped!! They were 300 on the 7th (anything under 500 is considered extremely high risk for infection.), which was not surprising because the docs had warned us that that would happen.  However, they expected them to recover between the 7th and 13th so you could get chemo on the 14th. They needed to be 750. Your home health nurse, Scott, came and drew blood and said he'd fax the report once he got it. When he did I was totally surprised to see your counts had dropped to only 100!! When we broke the news that you werent going to have to go to clinic the next day... I dont think you could have been happier. I was disappointed though. I am so anxious to get this intense phase over with and behind us.  I hate always worrying if someone comes over that they are bringing in germs. I just found out Alyssas friend Abby is really sick with the pukies. She spends a lot of time over here. In fact she was here on Saturday, and at church with Alyssa on Sunday. Im making myself sick worrying that your gonna catch it and have to go in to the hospital.  If you get even just a cold with a fever...its an automatic few days in the hospital with your counts as low as they are. I dont want you, or I, to have to do that again.

Recently, daddy's cousin Lacey told me about a family that just found out their 9 year old has AML. Her chances arent so good as yours, and her cancer is a lot more aggressive.  I keep thinking about this poor family and cant help but cry.  How terrible a thing to have to face with a good prognosis like yours, but to have to face this knowing the odds are not in your favor...I dont think I could do it.  It says a lot about the strength of this family.  The Lord knows they can do it.  Whenever Im having a hard time I always think about how the Lord has promised us that we will face no trial we cannot overcome. I take great comfort in that... knowing that the Lord thinks I can do this. I hope the family of that little girl knows that too.  They have a long hard road ahead and my heart goes out to them. I will remember them in my prayers. 

It turned out good that you didnt get chemo for one reason.  We found out on the 12th that Alyssa had to get surgery on her foot!  We took her into the dr because she had a bump on her foot that wouldnt go away and was hurting her. Turns out it was a lipoma (a fatty tissue cyst) that had to be removed....on Thursday.  The same day you were scheduled for chemo.  Me and daddy decided he would go with you and I would stay with Alyssa. Weird to think he'd be at a surgery for you (another back poke) while I was at a surgery with Alyssa.  Amazing how everything works out.  Alyssa was a trooper and has bounced back with little to no pain.  I have such brave, tough kiddos.

We made her a Get Well poster and got her a present to
cheer her up...looks like it worked!
Ewwww...gross huh?

Saturday, October 9, 2010

Tastey treats...

On a lighter, and funnier, note... you have been having some funny cravings.

Sooo sweet!
The other day you asked me if you and Ry could have some oreos. I said sure. Then you asked for some ranch to dip it in!?  I laughed and you covered your face and said, "Its gooood." I said, "how do you know?" You said, "well, it sounds good..."  Sounds logical to me.

I got you all set up and took this video....

video
Ry wanted to try. She said it was good but she didnt want any more ranch.  She'd just have more oreos.

I couldnt help but laugh...your so cute.  Its like you are embarassed to ask for food because you know your asking all the time, but you just cant help yourself cause your "sooo hungry."  We were watching a family show and you asked me for another snack.  I told you you just had dinner and you said, "but mom, I still have stewoids (steroids) in my body that makes me hungry..."

Thursday, October 7, 2010

Bald IS beautiful!

I cant believe how hard this was. With all that we have been through these last 6 months, and knowing all along it would happen, it was still traumatizing. Well, it was for me... 

When I took your piggies out for the last time (for who knows how long) I really had to try hard not to cry in front of you.  I ran my fingers through your beautiful curls as you sat on my lap and I could smell your shampoo.  There were HUGE chunks of hair coming out in my hands! Id run my fingers through and have a handfull of hair in my hand. So Id set it in a pile on the couch and do it again.  The pile was huge. You wanted me to hold you on the porch.  Your back was hurting.  So to the porch we went. I just kept running my fingers through your hair and putting the hair in a pile. 

One of the many piles of hair.
We had talked about your hair that morning. I told you I thought we should shave it since it was coming out all over and sticking to your clothes and bedding and pretty much anything you touched. You said you wanted to have dad shave yours then you could shave dads (dad had already suggested that idea to you previously). So we planned on doing it that night. So, as we sat on the porch, you said you were ready, but you wanted Ry to come watch.  I though that was a good idea. I didnt want it to be a big surprise the first time she saw you, and I thought it was a way we could make it fun. It turned out to be a good decision.

When we went over to invite Ry you were basically bald on the top of your head. When Ry came to the door she looked at you and didnt even seem to notice. She said, "McKall your hair!" Then right after that, "Come see my new bunkbeds!"  So you went in and saw the bunkbeds...all the while me and Angie were struggling to fight back tears and hold it together.  You and Ry talked and played like you always do.  So, we headed back home and got everything set up for the shaving. 

Bye Bye ponytail!

You can see how bald you were on the top
before we even started.  I only cut off the back...
I cut nothing off the top!

This is what it looked like from the back once
we cut the ponytail off.  You can really see
how much it had thinned. 
You sat up on the stool and we wrapped you in a sheet.  Then I cut off the long hair and dad started to shave.  You did awesome at first, but then started to have a hard time.  You were really tired, and your back was hurting, and you just wanted to be done. But, as usual, you were One Tough Chick and hung in there. 

Let the shaving begin!

What a trooper! Cant believe how tough you are!

Oh how I love that smile!

You couldnt be in better hands...Daddys a pro!

Starting to have a hard time. You were itchy, and tired, and
your back hurt! Poor kiddo.
Ry was awesome!  She kept asking me if I'd shave her head! She said, "Lea, I really wanna be twinners with Mckall. Please shave my head, Lea, please!"  You said, "Ry, you cant ask MY mom, you have to ask YOURS!" She kept asking over and over again...it was cute, and made you feel more special than self conscious . Your sisters were interesting to watch too.  I told them before hand to be positive with you and not let you see if they were upset or didnt like how you looked.  Alyssa was very sweet with you and kept telling you how cute you looked.  Carly couldnt even watch.  She held it together until you were in the shower then started to cry when I asked if she was ok.  She didnt like it for the same reason I didnt.  It is a very visual and constant reminder of how sick you are.  


video
You are very mature for your age. I wish I knew exactly how your process all that you have to deal with. It was like you were sad...like you had just lost a good friend.  Like you knew it was going to happen, but were a little depressed when it did. You're amazing. Once you were done your sad mood instantly turned around when it was your turn to shave daddy.  It was a good time and Ry was really jealous by then!  She wanted to be "twinners with kall and Jake!"

I helped, just a little..

If you have to be bald, be bald with daddy!

Your back was really hurting you by this point. You can
tell by the way your standing.
After the haircut it was bath time and you felt much better.  You were hungry and wanted some pepperonis and so we caved and let you have some in bed.  You are so beautiful, even without hair.

You got all the hair off in the shower, and now your
getting "soaked" in my bath salts.

Mmmmm....pepperonis!
Since then (the last 2 days), you've made several comments about how you dont like being bald.  You ask me "how many more weeks till my hair grows back?"  I try to keep it positive though.  This morning after we got you dressed I said, "Lucky you! You dont have to go get your hair done! You are all ready, already!"  You seemed to like that thought.  Like it makes you special, cause all  the rest of us girls in the house have to endure a hairdo and you dont! Most of the time you dont seem to notice, but every once in a while you make comments about it. Im sure it will get easier as you get used to it. 

Neighbor Ali gave you this shirt...it says "Super Girl Power"
Perfect for my little trooper.
In the mean time Ive tried to keep you relatively busy and distracted.  We took grammy to meet grampy at the airport Wed then came home and worked on your preschool book.  You did an awesome job learning to write and recognize the letter A.  You also have been watching a lot of cartoons and reading a lot of books.  I hate to see you feeling so blah...


Your hands were shakey while you practiced your A's.
I dont like that.

A delicious "little toast" and pepperoni sandwich
is always a good distraction!

You told me that since you cant marry dad when you grow up,
youre gonna marry Tucker. I didnt have the heart to tell you
hes off limits too!
In other news...your home health nurse (Scott) came over and drew some blood today. You looked very different from the last time he saw you!  You have the steroid puffiness, and no hair! Im sure it was a shock to him, but he did a good job of hiding it.  Hes very mellow and I think thats calming to you .  You seem to like him.  You did good as usual, and he faxed me a copy of your labs. Your counts are down even more.  Your ANC is only 300, but surprisingly your blood and platelet levels looked good.  We just have to hope we can continue to keep you fever free, and get your counts up to at least 750 by next Wednesday when they draw labs again.  They wont do chemo on Thursday if you dont make counts.  Im ready to get this phase over with and hope there are no delays.
Bald is DEFINATELY beautiful!