Heart ache

Taylor seems to have dismissed the hair issue ( I have hair and she doesn't)..... I think. I keep it pulled back, and she doesn't seem to mind it anymore. She found a hairbrush last night and was brushing her bald head....pretending.... It hurt my heart so much. If she complains any more about it before my next hair appointment.....away it will go. Its just hair... I can let go of my vanity for her. I would let go of anything for her. Take it all, every last possession, just please give her back her health. Most days I miss my old life.... but I am so thankful for my new perspective. I encourage you to let go of all the things that don't matter, put others first, and live the life you imagined. The rug can get pulled out from under you in a second, so make every day a wonderful one.

The Silver Lining

Today is a new day, and I am so thankful for that! Taylor has perked up, and we can put the blood transfusion off another day. I have really struggled to see the silver lining in all of this.....fear has crept into my heart and made a home there. The repetition of chemo, get sick, get well, transfusions, and radiation looming has worn me down. Taylor was born with cancer, which raises concerns for our baby Max. We have decided to move forward and have him tested. I cannot explain how hard the unknown is... Yesterday I found myself a blink away from crying all day...lost in worry...exhausted. I ran through a subway drive through to grab lunch, placed my order, paid, and then forgot to drive away! I heard a knock on my window and the subway worker saying "Mam? Mam? Is there something else you need?" It made me start to think about what I really needed. Strength? Peace? Faith?

I put the kids to bed early last night and found myself curled up with our big dog... her head ended up soaked with tears. I cried harder, and she nestled in closer. We sat together for awhile... and then a wave of peace washed over me. I felt a surge of energy and started to clean up the downstairs...wiping glue and glitter off the table, placed baby dolls back in their toy box, books back on the book shelf...and thought to myself.. we had fun today. I am doing my job... right? I can do this.

It isn't a coincidence that at the same time, a benefit was going on for Taylor. Friends, co workers, family, and strangers came out to support our family. I could feel the prayers and positive energy and I wasn't even there. It always seems when I start to think I can't....a hand reaches out to me, a prayer lifts me up, a miracle happens.... I don't know what the divine reason for Taylor having cancer is... but I know it has changed people's hearts, brought people closer to God, and reminded us all how precious this one life we have is. God is good and that is the silver lining.

Anything for my girl...

 I'm dreading tomorrow, as I dread every chemo day. I am busy packing distraction games, crafts, snacks, prizes....anything I can find to pass the time. I am scrubbing our house clean, and trying to give my 8 month old baby the extra attention he so deserves before I am gone...again. Im really hoping the fish and tank I bought Tay yesterday doesn't add unnecessary germs to our home. Maybe I should have asked her doctor first? Shoot.... Maybe I should have saved the money for more important things....but yesterday it felt important to get those three beautiful fantail fish. Taylor was quiet on our way home from the hospital...too quiet. She seemed somber, staring out the window. I worried what she was thinking about.
We got home, and I raced out to buy the fish. I needed to have a happy end to a terrible day. I went to a pet store and was amazed how difficult it was to buy FISH! This isn't my first rodeo, I have owned fish, frogs, turtles...you name it. However, the gal working wanted all but my first born before she would sell me these fish! I wanted three small fantails, and she said I needed a 29 gallon tank....seriously....?? So I compromised and picked out smaller fish for my smaller tank. She then informed me that I can't take the fish today....I needed to let the water sit 48 hours (I bought spring water ahead of time), and come back for the fish. What!? I explained my situation and the need for my fish today...and the answer was still.... NO. My solution was to buy my tank from her, and run to a different pet store to get the fish. Such a rule breaker, I know! I was getting my girl some fish if it killed me.... even if that meant breaking all the "goldfish guidelines"! I checked out at Meijer, quite pleased with myself.... three beautiful fantails and a bottle of wine, far and away my most random combo.
Taylor was thrilled! She danced around me squealing. She helped set the tank up, and sprinkle the food in. She seemed to be extra sweet last night, extra thankful, extra happy. Mission accomplished. I added the three new fish to my prayers last night ("Spot, "Red", and "Smokey")....and they all are still swimming today! They too were traumatized, "saved" from a murky overcrowded tank, smashed together in a bag, jostled around on the drive home..... and now are swimming happily in their new home. I hope my sweet girl has a happily ever after too. I hope all of this leads her to a life free of cancer....nothing else matters...nothing.

This is a marathon..

A dear friend of mine said that this is "a marathon, not a sprint." and he was so right. The adrenaline has worn off.... I don't have Beyonce in my ear anymore (ha, wow... refer back to journal entry "Sunday" March 4th), and I feel like I am on a long run, telling myself to keep going up that hill. I am broken by watching Taylor suffer. She cries at night, afraid to go back to the doctor. She paints and tells the characters on the page that "It will hurt, but it will just take a second." She wraps my arms with bandages and pretends to cut them off saying, " I'm sorry, its almost over." These are words I say to her.... and will continue to say to her every week until this is over.

I made an absolute fool of myself today.... We spend most of our days at home....no need to dress up right? (Sorry Chris!) Today I took things a little further and decided to stay in pj pants, hoodie, and no makeup. We needed to run through the bank, not getting out of the car, so I decided to stay in pjs...mistake. Taylor and Max watched a movie in the back seat while we entered the bank line. I chatted with the teller and glanced back to see Taylor slumped over with her eyes rolled back. "Taylor?! Taylor!!!" I reached back and grabbed her arm, she wouldn't wake up. I jumped out of the car screaming her name, pulled her out of her carseat and began sobbing shaking her. She opened her eyes, yawning, saying, "What mommy? I'm sleepy!" Hello!? It was about naptime, she was tired, Max was sleeping next to her and I didn't think a thing of it. The bank teller was saying, "Mam, mam, is everything OK?" I looked around, pj pants and all, with tears streaming down my cheeks, and gave a quick wave to the 4 cars starring at me. This is my life now..... This is me now..... I gave a quick call to my sister who always seems to piece me back together as quickly as I fall apart. In true "big" sister form, she keeps coming to my rescue. Now no need to sound the alarms, I really am ok, but I feel it is important to document this.... the good, bad, and the ugly. This is a "marathon, not a sprint." I am in the part of the run where everything hurts, you want to quit, stop, give up......but you don't..... you just keep going....

Long chemo...

Evening time, after I have tucked my two babies in bed, is always hard for me. Worry tends to creep into my mind, fear into my heart... We are confident that Taylor will beat cancer, she has to.....we just dread this difficult journey that lays ahead of us. I have been preparing Taylor for losing her hair. When I told her we are cutting her hair really short next week, she asked, "Will it hurt mommy?" Oh my heart... it never crossed my mind to explain that haircuts don't hurt. I left out several details of Taylor's condition in my last update..... and to save Chris and me painful conversations in public (I experienced a few today), I would rather update people this way. Taylor has a form of cancer called Rhabdomyosarcoma, and is in stage 3. This is a cancer that begins in the muscle, and can also be found in the tissue and bone. Taylor's tumor was found in her peritoneum, this is the sack that holds your intestines. Her CT scans and bone marrow test showed that the cancer has NOT spread to other areas of her body at this point, but it has left the margins of where her tumor was found. She will begin 46 weeks of chemo starting Wednesday, and an additional 25 radiation treatments. She will also have another surgery Wednesday to install a device, (port), to receive chemo and daily meds. All this being said... our goal is still to of course help Taylor beat cancer, and to have some fun along the way. Nothing else matters to us. We will do absolutely anything to make this easier on her. Her oncologist tells us that this is actually much harder on the parents than it is the children, we are praying he is right.