Bam

Grace has this incredibly thick curly hair. It's the type of hair that needs a lot of conditioner, and should not be brushed unless its wet. Here she is in this hospital bed, moving her head around, her hair is getting knotted, almost matted. Everyday, as I brush it , I add leave in conditioner, and now coconut oil in her hair, to help with the tangles. As I sit thinking how can I fix this I started scrolling Amazon looking for satin pillow cases, like the one she has at home... and up pops a satin sleep cap... and then a chemo head rap...... Bam....excuse me a moment while I pick myself up off the floor.. I am trying to buy a satin head wrap for my daughter's crazy hair that she won't need because she is going to lose it due to chemo... Bill stayed Sunday night at the hospital with Grace. I was only at the hospital about 30 minutes when the nurse came in ready to move us to the oncology floor. ... why weren't we already packed? We quickly packed up everything and dashed off to the onocology floor/section. The nurses were bustling around Grace...getting IV bags ready...and one of them said something to Grace about meeting the needle ninja who is the best nurse for accessing the port... I stopped and asked what are they giving her........ Bam.....woowa.. getting up off this floor is getting rough on the knees..... They were getting her port ready for the first chemotherapy treatment...WOW... it's happening... today if the labs come back good. The doctor came in at 1 ( our requested time) explaining the roap map... the treatment plan Reginmen DD-4A. This regimen will last 28 weeks...... Bam.... Let me stay down here a minute to digest this.......seriously 28 weeks...that is not a typo...it is 9 cycles of chemo over a 196 day period. Once a week we will come back here for treatment. They will be giving her 4 different types of medicine in different combinations each week. During the roadmap explanation, we paused as the needle ninja accessed Grace's port so they could draw blood. Bill spoke more with the doctor about the plan, while I tended to Grace's needs. I still have a couple questions that I have written down that I missed...Like the radiation treatment, according to the plan it looks like 3 weeks,(not 2) and my understanding is it is everyday M-F. I know that is not here but in Tampa.

Brea, the therapy dog entered as the doctor left. They put a sheet down so Brea could climb on the bed and sit with Grace. Brea was the sweetest. They showed Grace some of the tricks Brea can do..like speak, high five, sneeze and play uno. Yes Uno... we were quite impressed ourselves.

While Grace was being entertained by the therapy dog, they came in to teach us how to give Grace the lovenox shots. They took us to a different room, and had us each actually practice giving the shot. Clean your hands, clean the poke spoke, insert needle at a 45 degree angle, insert medicine, pause before pulling it put, remove needle and press hard on the syringe and a plastic needle gaurd pops up for protection. Got it. Both Bill and I did it like pros. Great news if Grace does well with the chemo treatment, we will get to to home on Tuesday, or Wednesday. So today is a training day.There are a lot of training videos to watch and a Childrens Oncology book to read. ( they actually went through the book with us) The labs came back great. They came in and gave her an IV bag of fluids. Then gave her some Zofran for nausea , Vincristine and Dactinomycin. I was shocked at how fast the meds were given. Seriously her first treatment of chemo was down in about 15 minutes. not painful. She ate a blue ice pop as the chemo bags dripped, then a oreo milkshake to keep the metallic taste out of her mouth. Anna from a support group Child Life came in to help explain to Grace that she might lose her hair. She also gave Grace Chemoduck. Grace named him Fred. He has a chemomport like her. Anna gave us a lot of other useful information about support groups. We have seen three different people from Child Life. They have been an amazing resource. She also gave us some Beads of Courage to do at home with our other children.

After dinner, Grace and I were putting together a puzzle when the nurse came in and said,"It's time for the lovenox. Mom, they want you to give it this time." Ok you can say it with me... Bam...that was like a kick to the chest from Ronda Rousey... I think I even felt the floor shake as I hit it this time.....I wasn't quite ready.. they trained us to do this ...but in the training its missing the live element of your 9 year old daughter who is looking to you for comfort with those big brown eyes... "Mom can I hold your hand?" she asked. "Not this time baby girl. I'm going to need them both." Poking a needle through skin is not as smooth as you think. The first layer is a little tough. So I poked her and it didn't go immediately in. I had to push harder. She is such a trooper. I kept apologizing to her, telling her I'll do it faster next time... but I'm afraid of jabbing her. Sweet girl that she is ...she apologized for crying because she could tell I was struggling with having to poke her. I'm so not a Pro...I'm sure I will get this before to long but right now...I hate this. Shortly after that, Grace began to feel queasy. She threw up at 10:10pm. The nurse came in and gave her more zofran and tylenol... Grace has been sleeping peacefully ever since. So here I sit rubbing my checks, recovering from the blows thrown at us today, watching this beautiful girl sleep... And being so thankful for these amazing doctors and nurses that are moving so fast to treat her...we are so thank for all the support we are being given. Although we may not understand God' plan .. we know he is in control. and tonight I'm singing along to Chumbawamba... "I get knocked down but I get up again... Cancer your never going to keep us down."