Clinic Day

Today was clinic day! The usually morning drill, but so glad we were not NPO (no food). No back poke today! Her blood count showed an ANC of 300 and a hematocrit of 22. This week Presley was count dependent. She had to have an ANC of 750 to move forward with the next phase of treatment (IM). We welcome the week off of NO chemo. It was also decided that we would do a blood transfusion. We have been sitting on the fence the past few weeks and her hematocrit (red blood cells)  have been sitting right around where they transfuse at about 24. I had a feeling they would do a blood transfusion today. Only 10 days ago her ANC was 9000! I thought we would make counts this week, but she has a cough and a rash of some sort on her face and head, so her body is fighting something. They put Presley on a antibiotic. Ten days of meds here we come, gotta love those antibiotics. I was thinking she has a heat rash, its a bit of a mystery. We will keep an eye on it and hope that it clears up soon. With a low immune system they don't take the risk of it being something that could turn into an infection. The blood transfusion should give her some color and energy. When your RBC (red blood count) is low you feel tired. Getting blood products is a long task and comes with the risk of rejection. They will have to watch her for signs of a reaction. We got to clinic at 9:30am and they did a "Cross and Check" for her blood type at about 11:00 am. Getting blood is a min of 4 hours at the clinic. Crew and Daddy met us at the cafeteria for lunch. Presley was so excited to show Crew her "tubies". Crew was very interested!
We only had a few questions for the Doctor today. She has a droopy eye lid and still walks with her feet in (always has). Doc. Fluchel is not too worried about either. The droopy eye is a steroid effect and should wear off. The way she walks is a "toddler" trait and they will watch it until shes about 5 years old. Usually they out grow this. Presley did a little walking today to determine what effects the Vincristine (chemo) has done to the range of motion in her foot. Glad to hear that she seems to have no negative effects. We also saw her weight and height curve and she is doing well on both.
I gave Presley the choice today to ride her bike into clinic or to ride in the stroller. Did you think even for a second that she would have picked the stroller? Presley is still so weak in her legs (she has been walking on her own without holding on to the walls for about 2 weeks!) Walking is so slow. My back just can't hold that big baby anymore! She rocks the Strider Bike. You would think that if she can't walk to well that it would be hard to push and balance a bike. Like they say "It's like riding a bike, you never forget". I have been amazed at her strength and desire to get back in the saddle and ride her bike, even with low blood levels. Can't wait to see what she can do after the blood transfusion.
I am so tired. 7 hours in a tiny clinic room is too long for mama and a 3 year old. Clinic was long. We played with the doctor stuff, kitchen toys, went to the cafeteria for lunch, watched Tangled, played on the ipad, eat snacks, and did many crafts. Oh and dont' forget touched everything in the clinic office (exploring or was she bored?)!
We were masked all day and spend our day isolated. We were so excited because Reiss, our cancer buddy was at clinic today too. He also needed a blood transfusion. We couldn't wait to let them play and show each other their ports! But you see with these cancer kids it's just not that easy. We had a cough so we were isolated :( We played thru the window! Bummer. We will try for next week. It was great to see Reiss and Amber.

Faith, got to come and get a port today! "Faith has Leukemia too!"

Fun times getting to ride your bike in the hospital

Showing Brother her port with the "tubies" connected.

We were masked today, we didn't want to share the love. Presley had a cough and a face rash.

Craft time, one of her favorite things to do at clinic

Blood transfusion. So glad for the ipad!

I love those toes wrapped around the red tubes! Blood transfusions are long.

Rokin the Strider in the halls.

On our way home.

Inside looking out. We were in isolation.

Today the nurses got to met Faith (our new American Girl Doll).  Everyone loved Presley's new "Belle" outfit. Thanks Nana! She was the sunshine today in the office. Well..sorta we were isolated for most of the day! Presley has a way of stealing others hearts. Everyone loves Presley. Presley is always so interactive with the nurses and Doctors. The bright yellow dress, riding the balance bike, the bald head and that big smile is hard to not love! She made a statement today. LOVE YOU Presley. Everyone you met falls in love with you right away. You have so much support, you are so loved! Keep fighting hard, you are so strong.