#4 of 5 -IM

Well today I'm writing from the perspective of Daddy.
I hate LP (lumbar puncture) days. I start stressing out days before. Today's LP was not scheduled until the day before when I noticed on the treatment plan that on day 41 she needed an LP. So I called the clinic and sure enough, they forgot. That leaves us at the last appointment of the day. Normally I wouldn't mind being last but for LP means NO food or water. I kept calling the clinic hoping for a cancellation with no such luck. The mornings are really tricky. We decided to have Paul take Crew out for breakfast so Presley wouldn't know she was missing out. First thing Crew saying when you get him out of his crib is "eggies". This boy can put it down for breakfast. I distracted Presley with makeup and coloring, her ipad, polishing her nails and taking a shower.  She kept telling me "We forgot to eat breakfast!" Its so hard to stall these little ones with no food. I tried to give her apple juice which is approved up until 3 hours before the procedure. She will only drink water, which I love but not on LP days. I had Crews diaper bag packed and I was showered ready for clinic when Presley said "I want daddy to go to clinic today". I didn't know if she would change her mind at the last minute but daddy agreed that he would go today.  Daddy got the EMLA cream on and off they went. She looked so cute in her 4th of July outfit and her nails polished to match. It was so hard to wave goodbye. I was a mess. We have been talking about having daddy take her to clinic but I guess I wasn't ready for it to be today. My anxiety was so high. Paul is so good with the kids and it's not that I don't trust him. The truth is that daddy is probably better because he is so clam and interacts so well with Presley in the hospital setting.
I sent them early to clinic to get her CBC done early. I was secretly hoping that she wouldn't make counts so that I could give her something to eat and then we could just get an earlier appointment next week. In the end, I'm glad she made counts. Her ANC today is 1800.
I called about 10 times and texted all day. I even found a few excuses to be at the hospital. We had to drop off some donations, visit our buddy Reiss and pick up Zofran from the pharmacy. I got Presley checked into the RTU (Rapid Treatment Unit). We spent a few minutes with her while she was waiting for her LP to begin.
I'm sure Doctor Fluchel wants Paul to come every week! I usually have a notebook and a list of questions to ask. Paul only had to ask a few questions that I could remember. When I asked Paul how clinic went she said "Great". That's it? I had to ask so many questions to know how it really went.
It was a long day, and Presley was not too excited about having to get the "back band-aid". She has not had and LP for a while. She got her elevated does of Methotrexate, Vincristine and Zofran in her port. Doc. Fluchel said that she is handling treatment really well.  I was one happy mama to hear that.  It doesn't mean that its any easier or that its a breeze. I know that it always looks easy by the pictures. We just don't take pictures of the crying or the pain because we are too busy comforting her. It doesn't take away the "what ifs", and the reality of her life threatening illness. Presley amazes me at her ability to fight hard, and still continue to smile. She doesn't understand what cancer means. It is such a blessing, she just keeps smiling.
Daddy had fries waiting for Presley to have when she woke up. She didn't want them, What? She was so hungry but she got chemo right before her LP. She had a slushy when she woke up and on the way home it came out. :/ I'm hoping it was just a bad combo of wanting something to eat, just getting chemo and the ride home. We will keep her on her Zofran every 6 hours for the next 24 hours.
So she is scheduled July 8th for her final round of this phase. She will be count dependent. Then we will wait 16 days (not sure why 16, I was not able to ask the doctor :) ) I would guess 10 days to get the methotrexate out of her system and to recover her counts, and then to get us back on Wednesdays. So If she makes counts for the next round she will go in on July 8 and then will start Delayed Intensification (DI) on July 24th. Hoping it goes as planned but I'm always prepared for plan B.
I'm nervous for DI. From the doctors standpoint it is the hardest phase of treatment. From the moms that have done this before, Induction (first 30 days of treatment) is usually harder with DI being the second hardest. This phase has the most chemo with the addition of those nasty steroids again. We know what happen last time she was on steroids. Her numbers were really low and she was got every sickness! With that said Doc Fluchel is hopeful that it will not be too bad. We will be back to house arrest. Just when thing were starting to feel like they were moving back towards a  normal life.
We are so thankful for each of you, for following our story for continuing to give us hope. We will forever be thankful for the blessing we see.
Daddy loved getting to go to clinic today with Presley.
When RTU called to check up on her post procedure the nurse said "She looked so cute today in her festive outfit. We all were looking at how cute she is when she was under." Make my heart smile to know how much these nurses love Presley. We have amazing nurses and doctors.

Great way to distract her from wanting breakfast!

Red, White and Blue.

"We forgot to eat breakfast today!"

Life is better on two wheels.

Waiting for my LP (I look happy, but Im not too excited)

2pm....is anyone going to feed me today? Daddy holding Presley before her LP

Staying busy at clinic with Daddy!