Life moves us along..

My little Tay was worrying in the back seat on the way to the park earlier this week. "Mommy.... Mommy what do I say when the kids ask, why do you have on that mask?" You tell them you wear it to keep you healthy, I respond. "Mommy? Mommy what do I say when the kids say, "Tay Tay where is your hair?" You say, I don't have any hair, but someday I will, I tell her. And although it was cloudy out, I put my sunglasses on. I consoled myself, and took my two little loves to the park. I said a million tiny prayers that kids wouldn't tease her, and that their mothers would be a little more discreet with their stares. Most mornings Taylor will still confirm that we are not going to radiation. I love being able to say no. I can't tell her never again, and I wish I could. She will have a scan in a few weeks that will let us know if all of "this" has been working. If 30 weeks of chemo, and 5 weeks of radiation did what we prayed it would do. So there is that... looming over us....waking me at night. I think it is just my minds way of protecting my heart, preparing myself for the worst, and hoping for the best.

We are so lucky to have this incredible support system of people who love us, pick us up, and dust us off over and over again. Sometimes I feel like Chris is forgotten in all this, and I just wanted to make sure I mention how wonderful he is.... I think I am blushing. Although he isn't writing, divulging, and openly sharing his experience... he is in this with me one hundred percent. He is kissing away her ouchies, rocking away her nightmares, tricking her into taking yucky meds, distracting her with games, and calming us all with his happy-go-lucky attitude. He may not be there physically every single time we are at Riley, but he is there. When he is able to come to the hospital, he seems to take stressful situations and slow them down a bit. He makes calm, calculated decisions, and reassures me that we are doing the right thing. I can't imagine how hard it would be to put on a happy face every day at work, field questions with composure, and focus on other people's children when his own is going through so much. He is absolutely the best dad I could ever wish for to our kids. I know this kills him to watch her go through this, and I know that we were meant to walk this journey together. Well, that is enough of all that...hehe. On a lighter note.. Taylor found one of Chris' school pictures today and squealed, "Daddy doesn't have hair... does he have cancer too?!!" I couldn't help but giggle, and tell her that he cuts it like that to look like her. She seemed satisfied, and tucked the picture in her pocket. Life is still really sweet, happy, and full.

Best Medicine..

I haven't written in awhile....my words keep failing me. I write, and it just doesn't seem to do our situation any justice. I can't seem to capture the mix of beauty and tragedy in this whole situation. Beauty? Yes beauty. There are really beautiful moments of compassion, gratitude, and hope that piece back together our broken hearts. Radiation is over. Our doctor told us the rest was up to God, wished us luck with chemo, and sent us on our way. His words have swirled around in my head for a week....why won't that register with me? Why won't that settle? Because I am her mother. That is why. My mind....my heart cannot accept anything other than a happily ever after. I will not lose her.


I soak up the mornings where I can watch her sleepy smile stretch across her face as I tell her we don't have any doctors appointments that day. Sometimes she hops around her room, dancing and prancing a little "no hopkittle day" dance. I witness the simple joys of swinging, bubble baths, and sibling fun with her baby brother. A few nights ago Taylor and Max were swinging side by side,  and Taylor squealed, "We are SWINGERS, we swing at NIGHT!" Oh dear.... Did I mention that my baby boy has grown up in the midst of all this? He turns one next week, and this has been his journey too. We are so lucky to have such a forgiving and happy little guy. It isn't easy to leave your baby every day, to miss things...but I know he forgives me and wants his big sissy better. I know it.

I prioritize my worries at this point. I focus on getting meds in, food down, and pain under control. I can't worry about all the things she is missing out on, because everything can wait. But sometimes worry creeps into my heart when I notice a somber, pensive mood wash over Taylor. What she needs doesn't come in a bottle, or through an IV. It requires a 45 minute car ride. If I can just get her there, and into the arms of her best medicine, her best friend, her main source of strength.....my 3 year old nephew. He doesn't see cancer, he sees Taylor, and I love him for it. He is the smartest, kindest, and most amazing little healer I know. During her first long stay at the hospital, we taped a picture of Drew to her hospital bed. I watched her trace her fingers around the outline of his face every day....missing him. He gives me hope, he believes in her one hundred percent, and I often need those visits with Drew as much as Taylor does. We love you Andrew!

Decisions, Decisions....

"Mommy what are you dooooo-ing?" I snap back into reality. Was my head really just in my hands? How long have I been sitting like this? Where was the nudge from Chris?? I glance back at my little loves, both securely fastened into their carseats, toys in hand, enjoying each other's company. Taylor squeeled, "This is SO fun!" Chris and I exchange a familiar glance, the one that says, "That was SO cute, but SO sad." Before Taylor pulled me back down to planet earth, I was caught in a memory, drowning in a sea of horror, flashing back to our first few days after Taylor was diagnosed. I remember crouching in a lounge on my knees, crying, while a nurse hugged me. I remember watching Taylor sleep every night, and sobbing quietly in my chair. I remember seeing a look of absolute despair on Chris' face, a look I had never seen, and feeling absolutely terrified. My memory of those first few days is fuzzy, it's hard to believe that four months have passed. If we are lucky, we have 7 more radiation treatments, and 7 more months of chemo....if we are lucky.


I make a decision every day, often several times a day, to handle this situation with grace, patience, and courage. The last few weeks have been so incredibly difficult, and I finally hit my breaking point. It felt like I just stopped treading, raised my arms up, and sank. Down, down, down to a place of complete heartache and worry. It helped nothing. In fact, it made everything a million times worse. So I am back in happy mommy mode, making the decision every day, several times a day, to stay positive. In the midst of this difficult time, we are so blessed. We have our sweet girl, our happy little Max, and each other. That is enough.

Truth..

Truth, cancer sucks. I hate that word...sucks....its so rude, but then again, so is cancer. Cancer rudely disrupted my life....my two year old daughter's life...and all those who adore her. It has wrapped its claws around us, and every day we fight to break her free of this rude disease. This past week of radiation was absolute hell, and this coming week will be worse. Late appointments every day....(fasting + sick toddler = torture)......and 8-10 hours of chemo, plus radiation on Thursday. I'm so tired. 

On Friday, going on 18 hours of no food or drink for Tay, an adorable 6 year old girl came into the kid's playroom where we were waiting. "Does she have cancer too?" asked this bald little beauty. I told her she did. "Where is it? Mine is in my stomach, I got it from daycare." My heart cracked, and instantly I adored her. I told her that Taylor's was too. Her beautiful eyes lit up, "Is it a Rhabdomyoscarcoma?!!!" she squealed. She and Tay both have sarcomas, their bond was instant. This little girl has a fire to her, a sparkle, a spunk..... she is nowhere near done on this earth. Taylor was enamoured by her, and I can't think of a better role model than this brave little fighter. Later, I watched the bald little beauty's mom carry her out to their car, she was motionless, sad, with her arms wrapped tightly around her. I felt so much respect for her mom, as she gave me a half smile and headed home for the day. I know how that feels. It sucks. (Ick, hate that word).

Truth, this week is going to come and go, like it or not. My little love is going to go through hell, and so are Chris and I, but I am making a decision to fight through it. I am making a decision to have fun every single day, and end things on a good note damnit (hehe, sorry). I can do this. We can do this. She can do this.

Achy Breaky Heart

"What is wrong with those fiders?" Taylor is crouched down peering at some dead spiders in our garage. "Ummmm, I'm not sure." I reply, really not ready to have an in depth conversation about death and spider heaven. "Are they sick?" she asked.  I tell her they must be. "Did their mommy make them sick?" Oh. My. Gosh. I feel like I may get sick. "No, no, their mommy helps them get better, she never wants her babies sick." I answer.  The next day she tells my mom that the spider's mommy made them sick. Ouch. Later that same day, I tossed away those dead spiders, along with all the guilt I feel.  She doesn't understand all this now, but someday....she will. So, to my 20 something Tay Tay, when you are reading this blog someday, know how much I love you, and you can say a million things to me that may break my heart, but that will never change.

Today was so incredibly hard. Every Monday Taylor is "masked down" (given anesthesia through a mask rather than her port), and she hates it. The worst part of the morning is "restraining" her while they do this, the second worst is handing her limp little body over to the nurses, and the third worst is walking down the long quiet hallway without her to go wait. I am not sure how long it usually takes for Chris and me to start speaking after this process. I know he usually hands me an ice water, and I come floating back down to planet earth.

I  locked eyes with a mother in the waiting room last week, and her heart-sick look tugged at my heartstrings. She was holding an adorable little boy with dark lashes, shading beautiful, brown, sleepy eyes. He has a brain tumor, not a candidate for chemo, and doing radiation to buy more time. Heart wrenching. Her eyes are watery, and it's hard to tell if she has been crying, or may be about to cry. I teeter on this brink myself, caught off-guard daily by grief. She seems frantic, and all I can do is think about what I can do to help her. I give her my number, I console her, commiserate with her....pray for her. I see her every day now, and every day she inspires me. Our kids both have cancer....our babies....little pieces of our hearts walking around in human form....and there is absolutely nothing we can do but hope for miracles, be good mommies in the mean time, and have courage to fight through this.  Please add baby "E" to your prayers.

Sticks and Stones...

Sticks and stones may break my bones....but your words can devastate me. To call this week difficult is an understatement. Radiation is a whole new ball game, and so incredibly hard. The waiting room feels like a Lifetime movie.... each family with their own heartbreaking experience. A few weeks ago, Tay went down for scans and to be fit for the radiation bed. As we waited to meet with our doctor, a woman came out of the radiation room surrounded by a burst of cheers and joy. She rang a bell, and hugged the nurses goodbye...it was her last treatment. My heart was full for her, I smiled, and whispered, "Congratulations!" Across from me sat a 70ish woman who was silently blotting away what seemed like a million tiny tears seeping from her eyes. She looked wounded... heartbroken. Shortly after, her flushed husband came hobbling out of the radiation room. She hurried to meet him.. taking his arm and throwing it over her shoulder to steady him to the car. I now understand her pain. We all wish we were done, able to fast forward through the torture that our loved ones go through....that we go through. I found myself challenging our doctor today, "Does she really need this?" "Why are we doing this? She could barely walk last night, she was in pain, this isn't what we were prepared for..." I was fuming, I was exhausted from spending most of last night plotting to just STOP everything. What if we just didn't go?? Then what?? And as if her doctor could read my mind, he looked at us and said. "If you don't do this, you will lose her for sure." The record stopped. Time stood still. I stared at him wounded, heartbroken, defeated. His words stunned me, humbled me....hurt me. Yesterday the nurses had to pry her from my arms, and today I handed her over.... willingly.... praying that this will fix her. Each day, when radiation is complete, and they call us back, I run down the halls to her. I don't care if I look like a fool, because when I tell her that mommy will be there when she wakes up, you better believe that I will be.

Go time..

Today a cashier eyed my two bald beauties, " Twins?" Me, "No, two and ten months." Cashier, "Well, which is the oldest?" (Ouch) I reply, "My daughter."  The cashier eyes her mask and asks, "Allergies?" Me, "No, cancer." I felt that familiar knot form in my throat, tears burning behind my eyes, and a sea of hurt wash over my heart. He didn't respond, I finally looked up to meet his eyes, and they were full of tears. His 70ish year old spotted hand was over his mouth. I didn't know what to say, so I grabbed our bags and wheeled my little loves to the car. Thank goodness for sunglasses. I pulled them over my eyes, turned the Elmo movie up, and cried the whole way home.

We begin radiation and a 5 weeks of isolation tomorrow. I was trying to grab a few crafts, gifts, bribes.... to help pass the time. I went to the store as soon as it opened, trying to avoid people, germs...ect. I shouldn't be shocked that the cashiers words hurt me so much, we are not even half way done. Shoot... I must have needed to get that last bit of sadness out, because now it's go time. I need to be a happy, brave, mommy who is able to lead my little love through this. This isn't my time to break down. So I am done with all that, focused,  with my eye on the prize. I want my little Tay Tay to complete the 5 weeks, ring the bell, and never look back. I began preparing her today, "Do you remember Dr. B?" (Oncology Radiology Doc) "Would you like to have another picnic in Bloomington?" And so it begins...