#4 of 5 for IM2

Today was #4 of 5 for treatments! We are almost done with this phase of treatment. I don't mind this phase and really want to hold on to it. I'm not ready for the next phase of this rodeo.  I know I should be, and I should be jumping for joy to start long term maintenance (LTM). She has about 2.5 weeks left and then she will be taking oral chemo EVERYDAY. I will post more about LTM soon.

Today's clinic started out rough and ended hard. Presley woke up early today, when I saw her open the bathroom door my heart just sunk. She needed another hour of sleep. Presley is a light sleeper and trying to get up and take a shower without her hearing me in our tiny apartment is almost impossible. She wanted breakfast and of course today she was NPO (no food after midnight and no water 3 hours before). She knows no breakfast means "back band aid" and she is never too happy about this. She got dressed and cried to get her EMLA cream on. We got to the hospital and she didn't even want to take her Strider bike with her. We were a little late to clinic so she was not able to sit down and make a craft in the waiting room. They sent her right to get weighed, blood pressure and vitals. The blood pressure cuff wasn't working so we had to try 3 times. Back in the room waiting for the nurse she just sat and watched her ipad. Then it was time for port access. She cried hard today. Her cry was saying...I'm over this. Is this ever going to end? Do I have to do this forever? I wanted to just hold her and tell her that one day this would not be apart of your life. Having to be strong and brave so often is tiring and wears you down. I want her to know too that I feel that same way...I'm over it. During port access she just cried and said "I want pink and brown (her favorite blanket since birth or aka kiki). Of course today in the hustle to get out of the door by 7:30 to get to clinic by 8, I forgot to grab pink and brown. I never do this, today was such an off day. The doctor came in to tell us that her ANC was 600. I thought they would send us home because her ANC needed to be 750. They decided to go ahead and give her chemo and do and LP (back poke) but to just not elevate her dose of chemo. I think this is the 3rd time she has just stayed with the 150 mg. of methotrexate. The CBC is telling us that her body is struggling to keep her numbers up and so not elevating the dose will help so she does not bottom out or let her numbers get too low. Her platelets are better and her red blood cells are good but her ANC has really never recovered since after DI started. I have been worried about this but the doctors again told me not to worry. Her body has been hit hard in the last 4 months. It will take a while to recover.

Smiling after my port access but not really happy today!

Waiting for my Lumbar Puncture where they take a little spinal fluid out and replace it with chemo.  

We then made the walk downstairs to the Rapid Treatment Unit. We were greeted by her nurses that just love her. She perked up a bit and figured I'm here so just smile and hope its done soon. The anesthesiologist came in and did his usual asking of questions. I just told him "just do what they always do, she does well with that". I then walked her back, trying to keep her calm, the procedure room is scary. She was extra whinny and clingy today. There are 2 doctors, a nurse and the anesthesiologist  standing around the table that I lay her down on. She didn't want to let go today. As the anesthesiologist  started to put the medication into her port I noticed new drugs (3 new ones) I asked him, what are you giving her, he didn't answer. So I turned to the nurse and asked her she just shrugged her shoulders. Looking back I should have said STOP! As soon as she was asleep I walked away. This is very hard and emotional to leave your baby in the arms of medical staff knowing complications could arise. It wasn't the normal Doc Fluchel or Doc Green and Wendy or Becky. I felt comfortable but not at ease like I do when her doctor and Wendy are with her. She slept for a long time and Wendy (She was with her when she was waking up..thank heavens) had a hard time getting her up. She finally woke up a little and I had sausage and french toast for her waiting. last time she was upset that she missed breakfast when we went straight to lunch foods. I thought she would like this. She reached out to grab the sausage and I knew something was different. I looked at Wendy and her calmness helped me to relax. She wasn't too worried but I was. She had a hard time coming out of anesthesia today. She has done this more than 20 times and I have never seen her do this. Her eyes were not normal and she was very off balance. It was then I asked what did he give her....Dex (WHAT?) Propofol (okay that's normal), Fentanyl (what? that's a heavy pain med?? WHY?) Some doctors do it a little differently but I was upset because I thought I had made it clear that I wanted what she always got..surely that was in her charts right? Dex (steroids, really?) Wendy was great...she reassured me that Presley was OK, just too heavy of a sedation for Presley. Some kids like this cocktail. Mama bear will be roaring loud next time around.

This is what over sedated looks like. Poor girl was so groggy.

We made it back to clinic to get chemo and she was wanting to play and be her happy self but she did not feel well. She puked and was very groggy. Reiss buddy was at clinic and she tried to play but just didn't have the balance or coordination as she was still sedated. She got her chemo and zofran and we headed home. She did fine the rest of the night but I was so upset and worried. Being her biggest advocate how did I let that happen? Don't worry it won't happen again! The anesthesiologist  didn't do anything wrong per say just gave her more than her body can handle. We packed up and headed to Grandma house. Life is always better at Grandmas. We were both so tried..I feel asleep so fast. It was a hard day for both of us. Emotional, stressful and just a feeling of being really wore out from all the demands and schedules that treatment keeps us on.  The positive side to starting LTM is that we will only have to go to clinic once a month. Clinic makes for a long day.

Kenny, Reiss, Mommy and Presley. The kids are so thrilled right?

Visiting Grandpa at the University Hospital. We both had to be brave today! It was fun to just walk over the bridge to see Grandpa. Presley really perks up when others she knows, are doing hospital type things!