Tent time!

Since we've been home a lot lately we are doing our best to come up with new and exciting things to do. (Our best is still pretty lame.) Daddy's idea of the weekend was getting out the camping tent and setting it up on the deck. Who'd have thought it would serve as hours of entertainment for both my kids. So far they haven't fought once out there (THIS NEVER HAPPENS AT OUR HOUSE!). Here's what they told me this morning.

CADE: Mama, this is our house.
CORA: Ya, I'm the mommy and Cade's the Indiana Jones daddy and you're the great grandma.
MAMA: THE GREAT GRANDMA??????
CADE: Yep!
CORA: Yes, now great great great great great great grandma can you go in your big house and get me some juice please?

nothing new

We went back to the clinic yesterday and her counts were pretty much the same as they were on Tuesday. To quote Dr. J "call us if anything changes because in actuality her counts are horrible, but they are no more horrible than they were 48 hours ago." So this is still to be expected at this point and we are glad we didn't have to have a transfusion. So please keep your germs away from Cora. Enough said.

Check out this picture of Cora in one of her new outfits with matching cowgirl hat from gran. Isn't it too cute? Could I pull this outfit off??? I love it!

How Low Can You Go??

We went to clinic today and Cora's ANC (that's the number that tells how many disease fighting white blood cells her body has) is 142. That is low. It's down from 500 last week, which means we will be staying home again this week. Plus she has a NASTY skinned knee (seriously, the entire knee is a scab-- no skin!) so Dr. Whittle put her on an antibiotic that causes stomach cramping (lovely) to speed up the healing process. He wants to check her again on Thursday to be sure her ANC is going up and not down.

The good news is that both her hemoglobin and her platelets have come up (a little) so she did not need another transfusion today! Yay! Cora threw a fit complete with kicking and screaming and even throwing things today when the doctor tried to examine her. It's very hard to punish her because she is just sick of this! And frankly, I am too! I feel like throwing fits myself some of the time! So she just apologized on the way out and we will try to do better next time!

On the Cade side of things, today is his last FULL day of school. Wed., Thurs, and Friday he has half days and he has a end of the year party on Friday (hopefully mommy can figure out a way to join him). So he is almost officially on summer break. Something he is totally ready for. The trick will be keeping him busy while still keeping Cora away from germs. We're hoping her counts will regulate soon so that we can take a couple of trips this summer and get to the beach and pool! We are ready for normalness!
We'll update after Thursday. Once again, thanks for caring about us!

Cora Funny

We're sitting at the dinner table reminiscing about how when Cade was Cora's age he wore a hot pink piece of fabric tied around his neck all the time as a cape. Cora loves to dress up too, and her eyes lit up at the sound of the word "hot pink." I told her I didn't think we had it any more, but Cade insisted he had seen it in his room. Off the two of them went to hunt it down. Cora comes back. I say, "did you find it?"

Cora: "No it's not dewer (there, the girl is totally a southerner)."
Mama: "yea, I think it got a rip or something."
She thinks for a minute. "Mama, what's that place called where you put nasty stuff?"
Mama: "the trash?"
Cora: "No-uh! The place where you put nasty stuff, you know. Goo Wheels."
Mama: "What?"
Cora: "Goo Wheels!"
I then had to die laughing because I figured out that the place where you put nasty stuff is Good Will!

Transfusion x 2

Check out the pictures above! So I sorta had a feeling today's clinic visit wasn't going to be pretty. By this morning Cora was covered in bruises and petichae (if you don't know what those are suck on the inside of your elbow joint for a few minutes and watch for red dots). She had a really nasty dark bruise in the center of her chest, bruises lining the inside of her mouth, and a black blood blister on the tip of her tongue. She was fussy with little appetite. So when we arrived at the clinic and Cora stuck her tongue out at one of the nurses, they shuffled us back to a room, and took blood for a CBC to check counts. No one was too surprised when her platelets came back at around 10 and her Hemoglobin at 6.8, which meant both needed to be transfused, AGAIN! I questioned Dr. G and the nurse as to why they were so low again after the transfusions on Monday, but they both continued to assure me that it was due to the previous month of chemo and counts should start to come up on their own soon. So platelets were ordered from the blood bank. (they have to be given before blood.) But low and behold----The Savannah Blood Bank was OUT of platelets. Seriously, they had none! (you can donate platelets just like you donate blood, but you need to call and schedule a time. if you live in Savannah, do if for sure! They obviously need it.)They were expecting a shipment from Florida in the afternoon that would most probably contain platelets for Cora. So...we came home, ate a little lunch, and waited. Around noon we got the call that the platelets were here and ordered. So we started then, got the platelets followed by the blood, and left with the doctors and nurses at closing time. We go back on Tuesday. We are hoping counts will be up, but have been ordered to "lay low" until them. Having low platelets means easily bleeding and bruising and she should avoid trauma. It's hard to avoid trauma when you're Cora. This evening she already wiped out on wet tile in dress up shoes and landed flat on her back, and pulled a drawer out directly into her lip and it got fat and bloody. So at bed time when she said, "mama, tell me a story with your mouth." She got a quick story that went something like this... Once upon a time there was a little girl named Cora who got hurt easily and had low platelets. Her mama and daddy didn't know what to do, so they put her in a giant bubble and just rolled her everywhere. The end.

A Real Problem

OK so this morning I realized I have a problem.

Well, actually I have lots of problems.........
I am mother to a five year old who thinks I was put on this Earth to entertain him, a two year old who truly thinks she is a princess,
the worst dog on the block,
and a cat that's only interaction with humans is to bite their toes when they invade her territory.
Not to mention that I worry nonstop about things I have not an ounce of control over,
I have gained 10 pounds in the last 6 months,
and my right knee hurts when I jog.


But this morning I realized I had a new problem.
I am addicted to Cutter's Point Coffee.
My car seriously almost automatically drives there in the mornings.
I used to go every now and then, but now I have to try really hard to NOT go. I even skip the caffiene, so why am I addicted?
The rule I have given myself is that I can go when I have cash and get a decaf skinny mocha or a decaf skinny latte. (I know, why even add the skinny when you're talking mochas and lattes.) I refuse to use my debit card on coffee. So this morning before we left the house I was $1 short a latte. My first instinct was to steal from the kids. So I go to Cade's pirate bank and find nothing but pennies. (He cashed them in his larger coins last week for a Indiana Jones LEGO set.) So then I go to Cora's piggy bank. I start to rummage through her coins and she has quarters. YES! Then she says, "Mama what are you doing with my dollas?" (She calls everything dollars.) I explain that I am borrowing some coins to get coffee, but I will replace them later. She totally freaks out! The girl is possessive about her "dollas." So being the loving mother that I am. I say, "Cade needs your help finding his shoes. Go check in the living room for him!" She bolts, and I grab the quarters.

I have resorted to stealing from a toddler with cancer.
THAT IS A PROBLEM!
So there you go, Cutter's Point! There's your free commercial. I'd choose you over Starbucks any day of the week!

Blood and platelets and bruises OH MY!

That's pretty much what today's clinic visit consisted of. We knew Cora's counts were a little low and probably dropping. I had a feeling that her platelets were especially low because last night I noticed several bruises on her legs, arms, and head. It's amazing how beat up one's head can get when you have no hair protecting it! Anyway, we arrived at clinic at 9:00 this morning and our suspicion was correct. Her platelets were 7, normal range is 150-400. Her hemoglobin was 5.6, normal range is 11-13. Needless to say she needed both a blood and a platelet transfusion. The doctor and nurse both assured me that this was due to the medications she has been receiving and dramatic drops in counts are normal at this point in treatment. So we spent all day receiving transfusions. We got home around 4:00 this afternoon. Cora had fun at clinic. She played playdoh, got beads for her Beads of Courage necklace, read stories, played doctor, and watched movies. After we got home she had more color in her cheeks. About an hour later I took her shirt off to put her in the bathtub and noticed a really dark bruise (darker than the rest) in almost the center of her chest. This was a new bruise one that wasn't there at the clinic. I of course freaked out (as I usually do) and called the doctor. I was just worried that something had gone wrong as a result of the transfusions. But both Dr. Johnston and my father in law assured me that it was probably just still a result of low platelets and to just watch it closely, so we are spending tonight watching the bruise and hoping that by our Thursday clinic visit her counts will be taking an upward swing. Hopefully that will be our last of the transfusions!

The Care For Cora 5K

As you know, Saturday was the Care For Cora Run at SCPS. The weather was perfect, we had a fabulous turn out, no injuries (that I am aware of), and just an overall loving, caring, fun atmosphere! This event totally exceeded my expectations! A team of my friends lead by Stacie New (and Sally Hutton) planned this event just for us. We can't even express our gratitude enough! The tiny little details (tiaras, wands, t-shirts, mile markers) were what made it so special and unique. We love our friends so much and couldn't fight cancer with Cora without them! My prayer is that every family who has to experience childhood cancer will have a support system as strong as ours. It is so critical. We were so worried about how we were going to pay for all of this when Cora was first diagnosed, but God is providing for us through the use of our friends. We are so grateful! There were so many great pictures that I couldn't choose. So I am posting a slideshow of them. BUT....the grand total raised for Cora's Medical Fund and CURE Childhood Cancer was...

8

That was Cora's hemoglobin level at the clinic this morning- 8 is not great. Normal range is 11-13 for children. When she was very first diagnosed it was 2, so 8 isn't super scary, but still not good. Dr. Johnston assured us that it was because of the medicine she has been taking and will continue to take through this week. Low hemoglobin causes paleness, lethargy, headaches, and dizziness, none of which Cora has seemed to experience YET! He said it will probably continue to drop throughout the week so we need to watch closely for the above symptoms and bring her back later in the week for a blood transfusion if she experiences any of them. He said if not before then plan on probably needing a transfusion on Monday. After this week, she will be off of this medicine and be finished with delayed intensification. The date she is scheduled to begin her maintenance phase of chemo is June 1st! Woo hoo! Dr. J also told us that the other medicine she is on this week (the one I have to give her an as injection) causes low grade fever. So...with low counts if she runs a fever, she will have to be admitted to the hospital. I think he was preparing me for the worst case scenerio, but it's a possibility. Her platelets are also low, so we will watch those as well. That all means that we will be sticking around home this week, trying not to pick up any unwanted germs, and praying that no fever will occur in the meantime. As of now, she seems to be feeling good. In fact, the nurse said she almost called me on Friday just because she hadn't heard from me! I am telling you I call that office about everything!

This Saturday, May 16th is the Care For Cora 5K Run/Walk that my dear, sweet, friends (whom I would not survive without) have worked so hard on. I am hoping and praying that Cora will be able to attend, but we will do what's best for Cora. I hope EVERYONE that is local will come join us on Saturday. It's not too late to register if you haven't done so already...www.savcps.com and we've moved the race time up, events will begin at 8:30. Thanks so much for praying for no fever and stable counts this week! Hopefully soon this will all be a memory!

A little fun!

Happy Mother's Day!

Happy Mother's Day to our two favorite moms!!!! We love you Gran and Abuela!

Shots are No Fun!

Well, we went to the clinic for two new drugs on Monday. One of them is really toxic so Cora had to have plenty of fluids through her port before and after. She did really well! She was in great spirits. She was a little mad that she had to skip breakfast, but right after she woke up from her lumbar puncture, she had a snack and was fine. I wasn't sure how she'd feel after these new drugs, but she has done fine. She still has a GREAT appetite and isn't too nauseated as long as I give her medicine to prevent it. The most traumatic thing this week has been the injections. She has to have a drug 4 days in a row this week and 4 days in a row next week. On the 2 Mondays they can give it to her through her port at clinic. The other 3 days we had two options:
Option 1 was to go to clinic each day, leave the port accessed, and get it there. I had two problems with this option. First of all, clinic is never quick! I mean we LOVE them dearly, but she has to get checked in, weighed, BP, temp, and then they call the pharmacy to order the meds, and it ends up taking at least 2 hours. We would have been there all week! Secondly, I didn't like the idea of her port being accessed for 4 days. She can get infections easily and cannot bathe. Option 2 was for me to give her the medication at home as an injection, we talked to doctors and nurses about it and decided this would be the best option. I figured maybe I could do it real quick like right after she'd fallen asleep and it wouldn't be to traumatic! I could not have been more wrong! A nurse from an infusion company delivered the medication yesterday and needed me to do the first injection while she was there. It was 1:30 and Cora had just gone down for a nap. So up she gets, mommy has to get all gloved up, cleans the area, gets band-aids ready, opens the sharps container for disposal, etc. before administering the chemo shot. Needless to say, Cora knew exactly what was about to happen. She was so upset! And today it was worse. She really knew what to expect today and the minute she saw the blue gloves she started yelling for daddy! Poor thing, just when you think home is the place you are safe from pricks and pain...mommy becomes the bad guy! Luckily, we only have one more day of it this week! I hope it will get easier next week, but I am not holding my breath! All things considered, she is doing fine and feeling good!

Head Shaving Party

The day I have been dreading for months finally came. Dr. Johnston wasn't kidding when he said at this intensive point in her treatment, her hair would start to fall out a lot. She has been shedding all over the place all week long. Hair in her mouth, her food, all over the house, and bathtime was a real disaster. It became obvious she'd be more comfortable if it was just shaved. I had spoken to several other mothers whose kids have undergone chemo and this is what most do when it gets to the point where it's itchy and annoying. So we decided to make it a party. We talked about it all day. Made pink cupcakes, read books about kids whose hair fell out from chemo, and even blew up our bounce house in the back yard. Then we got the clippers ready.
Daddy's head got shaved!

Leia got shaved too!

Cora's Before, During, and After Shave!

This is Cora on Friday afternoon. Obviously, the hair wasn't going to make it any longer and it was driving her crazy falling out all over the place.

Cora's turn to get shaved. She laughed cause it tickled.

First thing afterwards, she ran in the room to get her hat and said, "do i look pretty?"

Yay! It's over and everyone is as cute as ever, except maybe Leia. She got the raw end of the deal!