Delayed Intensification

Today July 25th we started DI-Part One (Delayed Intensification)

All week Presley has been asking "Do we go to clinic today?" This morning when she heard "Yes" she was not too happy. Then she said OK but "no back band-aid, right?". Again I had to give her the news she didn't want to hear. Yes. I also made the choice not to tell her about the EKG and the echo. I always struggle knowing if it's best to tell Presley before hand or to just go and get the procedures done without her knowing. After crying when finding out today was clinic, I promised her a trip to the Disney Store if she was brave. Today daddy came to clinic to help support Presley and Mommy.
On the ride to clinic her smile was so big, she was laughing and being so cute. So I took some pictures. As I took the pictures my heart was sad (I didn't want her to know that). I knew today was going to be a big day and that smile was surly fade to fear and anxiety. It is hard for me to see Presley scared and fearful. I posted a million pictures today on Instagram, but didn't stop to look at anyone else's today. It was too hard. Hard because my child wasn't smiling. I know, get over it, life isn't fair. I remind myself daily that happiness is a choice, but sometimes its hard to be happy.

Happy Girl, got dressed ALL by herself today. We even painted her nail to keep busy from not getting breakfast!

Today's clinic appointment started at 10am in the Cardiology unit. Presley's first attempt, on Day 2 at an EKG and echo was a nightmare. So much that we asked the tech if we could do this another day. He agreed. I knew that day was coming soon. The new drug Presley will be given during this phase is nicknamed "The Red Devil", it is know to weaken the heart. So the doctors need a baseline of her heart function. I asked Rachelle (her Child Life Specialist) to come to this appointment with us. She is so good at working with Presley and explaining all the procedures. Presley was able to play with all the sticky stickers and leads that would be used on her for the EKG. Presley was able to role play all this on her doll. I know that this helps Presley. With tears and telling us "No I don't want to do this, "I just want to go home and play with Jada", we got thru the 45 min. echo. Then the next tech came in to do the EKG. She really didn't like all those leads attached to her :( Thankful for daddy today to help hold and comfort Presley. I was able to get pictures of Presley's real emotions during todays clinic visit. Some visits we don't cry at all. Today was not one of those less dramatic days. After the EKG we went to the cancer clinic to get her CBC done. Again, "No I don't want to go to clinic", You can often hear me saying back, "I know sweetie, sometimes we have to do things we don't want to do, be strong." But getting to be on daddy's shoulder helped distracted Presley. 

Presley and Rachelle playing!

Leaning and role playing and EKG and an echo

If daddy was my tech I would be all smiles!

Presley had just finished the 45 min echo. Yes she was a good sport for 45 min. But then she learned she was not done, that the darn sticky part was not over. EKG time.

This procedure was much faster, but I HATE stickers coming off and these are not easy ones. 

So thankful for daddy today to help distract Presley and keep her spirits high

We checked in, got her vitals checked, and was assigned a room. Port access, which is usually pretty easy these days was not today. The ultrasound tech had to take off the EMLA cream so the nurse was afraid it would not be effective. So we decided to do the "spray." Really cold spray bottle of numbing coldness coming right at you as your getting a needle in your port, while all trying to keep the area clean. NOT a fun port access. Thanks EMLA cream we love you! You can see in the pictures her emotions. We waited to hear back if she made counts. She has to have an ANC of 750 to start this new phase. Her ANC was 1,100 so we were able to move forward today with DI. Love Hate. One day closer to being done, but not wanting to give her poison in her port today. Love Hate. Clinic was running late, is was busy, so instead of seeing the doctor we were sent down stairs to the RTU (Rapid Treatment Unit). Again..."NO not a back band-aid."We got checked in and that this point every ones stress levels are high. Presley is starving and has asked for a snack all morning. Just to top the day off.....NO food until after the LP (lumbar puncture).

This is feeling much more comfortable for Presley in the room at clinic that she is familiar with. Wait for port access.

I DO NOT LIKE THE "SPRAY" please let me just use the EMLA cream next time. Freezing cold stuff being sprayed and a needled too. Sorry Sister. Today has been a hard day. Even port access was hard. 

Presley was put out for the procedure and then it took a while to come out of the anesthesia. I don't blame her, it was a hard day a little rest never hurts. The nurses couldn't get her to wake up, but a mothers voice always does the trick. So daddy and mommy were able to wake that sweet sleeping angel up. She was STARVING. Still out of it but she doesn't care...just give me food! 

Trying to get her mind off all that she had to do today. Waiting for  the LP.

MMommy and daddy got a back band-aids today too, just like me! Only I had to have a needle in my back.

just a little bling!

I do not want a back band-aid, I'm tired,  hungry and scared. 

She has a band-aid collection, NO JOKE!

Just before we woke her up from anasitia

Sweet Angel. She needed a little nap today

Hungered! I love PB&Honey. I needed food for some energy

We then went back to clinic to talk to the Doctor and then to get chemo. Well....did I mention the doctors were running behind. I was so bugged at this point. We waited in the room for 1 hour. Finally said, can we just get started with the chemo and hope the doctor finds us soon! I was really bugged. Today was a big day, new chemo, new drug regimen and I had so many questions to ask. Our doctor has been out of town so we just had a random doctor. We miss you Doc Fluchel you always take the time to be sweet with Presley and she needed that today :( So the usually Zofran, Vinc (Vincristine) and the new Doxorubicine (The Red Devil).This drug has a lifetime maximum that can be given. We are grateful that she is only given 25 Meters Squared (who knows how to type that without my graphing calculator!) Presley will get 3 doses, so a total of 75 meters squared. Some of the side effects are; Nausea/vomiting, hair loss, pink or red urine, low blood counts, mouth sores, heart damage, nail bed discoloration, sensitive skin that burns easily. The Doctors said to expect transfusions and low ANC's (meaning low immunity) during this phase. Lovely.  It's red in color and is sensitive to light so the nurses keep it covered up just like methotrexate. Each chemo has it's own corks. Vinc (vincristine) has be to pushed in and then pull blood and then pushed to make sure its in the port line and that blood is flowing or will cause major damage. PEG causes reactions so you have to be "watched", and getting vitals during the time of infusion. TOO MUCH INFO! My brain once was occupied by what cute craft I could make, it now is occupied by medical terms that I never wanted to learn about in the first place. Funny how life is never what you imagine, good or bad.
Presley was given her two IV chemos today and then it was time for port de-access. This usually is not her favorite part but does pretty well. NOT today. Poor sweet girl. LONG, Hard, day for everyone involved. Even our little buddy at home, who always wonders where his parents have left him. Don't worry he was in good hands. Auntie even taught him a new word while playing with him today! Auntie! She sent us picture updates, he just melts our heart. Thanks auntie Erin for loving our little buddy Crew.
We start the dreaded steroids again. 7 on, 7 off, 7 on. Praying hard that the infections are minimal. Doc Verma told be that they are worried about how Presley will react to this phase. She had a rough go in the first phase, Induction and DI is much like that first month with intense chemos and steroids. Presley did not do very well on steroids the first round. Please keep her in your prayers. We will once again be home bound. Keeping Presley away from big crowds and really keeping up on hand washing and a clean and sanitized house. I use to think I had a clean house. GOOD thing this apartment is small. Keeping it cleaned to these new standards is a big daily task. We are always nagging on her to keep stuff out of her mouth. We walk around with AvaGuard and sanitation wipes. I have even been know to wipe down outdoor play structures. I know...I'm OVER THE TOP!
Presley got: Methotrexate (in her spine), Vincristine, and Doxorubicin. Presley has been getting Methotrexate and Vincristine this entire time, but the "red devil" is new. 

7 hours at clinic today. Tired, long, emotional and hard, we better all sleep well tonight.

Back at clinic in the room waited for an hour. Mama and daddy are tired of entertaining her NON-Stop

RED DEVIL-Doxo

Do you see that red chemo?

I have to start steroids again. UGH a whole new set of side effects. Steroids are NASTY.

flushing my own port!

I dont' like this today either. 

Be strong sister, you are almost done. LONGest day ever.

We love you Presley. You are brave, strong, a fighter, and a little love. We are thankful for your example in our life. We cherish every moment. I take SOO many pictures and I write so much. I never want to forget the emotions and moments of this stage in life. I also write for those moms who will hear "your child has cancer". I am a blog reader, only of cancer kids! I find comfort and strength for those moms and kids.
Thank you to the team of support we had today. Emotional, babysitting, meals, cheerleaders and those that stopped by to make Presley's evening better than her day. Thanks to those who texted and wanted to know how our sweet girl is doing. We will add all of you to the angel list! LOVE YOU ALL