Happy New Year

I have spent the past year living in the right here and now. I couldn't look back, it was too painful. I couldn't look ahead, it was far too overwhelming. So I lived moment to moment, treatment to treatment, scant to scan. Today, I have found myself with that familiar lump in my throat, hurt in my heart, and sheet of tears glazing over my eyes because on new year's eve, you can't help but look back. Back to the bump, the pokes, the surgery, the diagnosis, more surgeries, leaving Max, chemotherapy, kids living, kids dying, radiation.....oh my gosh the hell of radiation, missing birthday parties, missing weddings, bad scans, good scans, isolation, and more chemotherapy. I can see myself dropping to my knees when she was diagnosed. I can see myself crying in the hospital bathroom until it was Chris' turn to go cry. I can see Chris and myself running through the halls of the radiation center to get our crying baby girl. I can see Max crying hysterically when my mom left after watching him for long periods of time, reaching for her and calling her mama. I can see Taylor...oh my gosh, and I pray that no parent ever has to witness their child suffer the way we have.

And in between all the heartache there was God's good grace, shining through, lifting us up, and carrying us through this nightmare. There was each and every one of you, throwing us a life preserver when we were absolutely drowning. My house was cleaned during our first long stay, my dog was washed, meals were brought, cards and gifts were sent, bills were paid, benefits were organized, smaller clothes for Taylor were left on my doorstep, hugs were given, and most of all,  millions of prayers were said. There were times, in the midst of my darkest days, I would feel complete and total peace, for a few moments my heart would stop breaking, and I know that was from all of you.

I called a friend the other day, in a rare chipper mood, and she said how great it was to see a glimpse of the "old Brooke". I know what she meant, the happy Brooke. I miss that Brooke too. Thank you for bearing with me. For waiting for me to come back. 2013 is about health and healing for us. Rebuilding our family, our friendships, marriage, and growing our faith. I can't wait to go on a date with Chris without the gloom of cancer hovering over us. I can't wait to really rest, and let go of all this heartache. I can't wait to stop torturing my girl every Thursday. But most of all, I can't wait to watch our sweet girl ring that bell, and get her life back. Happy New Year to you and yours.



Rule Breaker

I broke the rules today. Many of them actually. A plate broke and profanity raced off my tongue. Mommy fail. I meant to say "shoot" I promise. Taylor kindly informed me that ladies don't talk potty talk, and suggested I sit in time out until I could think of something nice to say. Clever little thing...I pulled up to our mall at 9:58am, it opens at 10am. "WHAT are we doing Mommy?!" Taylor asked me. "Max and I won't touch anything, we will just sit in the stroller, yaaay, the MALL!" she squealed. She knows the drill. Mask on, stay in the stroller, don't touch ANYthing. "I want to show you something." I told them. I raced them in, and they both starred in awe at the holiday decorations. We rolled up to an over sized chair and there sat Santa Claus. "SANTA?!!!" she squealed. We waved at Santa from behind the rope, and I saw the sparkle come back in her eyes. I couldn't look at the workers starring at us, I just kept looking at Santa. I saw kindness and empathy in his eyes. He made our day with a simple wave. We rolled away and Taylor looked back and said, "Mommy, will Santa make me sick if I go see him?" Ouch. I explained that Santa was just waving today, maybe another time we would get closer. She seemed fine with that, and giggled to Max about seeing Santa. The piano was playing in the department store, and I let my little ones out to dance for a minute. (Max went straight to the shoe department and began throwing shoes across the room), but Taylor danced....and pranced.....and hopped around to jingle bells. It was 10:15am, and we were back in the car. I drove home with a lump in my throat. Everything hurts. I'm exhausted. 9 more treatments, 9 more treatments...

This too shall pass..

Mam, we are out, sorry... "Well, here is a plain doughnut, can you just throw a few sprinkles on there for me?" No, I'm sorry mam, I don't do the sprinkles. "Really? Really." Hi, I'm Brooke, and I cry in public at really inappropriate times. My girl just wanted a white sprinkle doughnut. I worried that it was the only thing she may eat today, that the chubby cheeks from two weeks of no chemo would wither away. Those dark circles under her eyes have re-appeared, and the little twinkle in her eye has dimmed. It's torture to watch. I wish I could take her and Max to see Santa, attend holiday parties, maybe even just go out to eat. But we can't. Just a few more months, but my body feels like dead weight, I have a constant lump in my throat, I'm exhausted. I look at her beautiful face and remind myself that this isn't about me. This is her story, her journey, and she suffers much more than I do. This too shall pass.

Dance Class

"Mine is the one with the curly hair!" "Mine is the one with the pony tail!" "Mine is the blond!" And I say, "Mine is the bald one!" to the other moms in Taylor's ballet class. I watch her prance around on her tippy toes on weeks that she is well enough to attend class, and it warms my heart to watch her shine. My eyes tear, and a lump gets caught in my throat every time I watch her clasp hands with the other girls, and squeeze them in a tight embrace to say goodbye. She is always the last to let go.  They head out to lunch, and we head home to isolation. Today the instructor asked each girl where they would go with their pretend butterfly wings while they did their morning stretches. Most of the little girls said to Disneyland, or a princess castle, or some other magical destination. It was Taylor's turn to share where she would go with her magical wings, anywhere in the whole wide world, and she whispered, "Here." and pointed to the dance room. My heart broke and swelled with pride at the same time. I love her grateful heart.



Burdens into Blessings..

"Mommy! Take it off, please take it off", my little one whimpered. I dropped to my knees in the middle of the pre-school hallway and pulled her mask off. I wrapped my arms around her. "I'm so sorry Tay." I whispered to her. I couldn't think of the right words to explain why kids were teasing her. I hate it. I hate this part of it. I wished the other mom would have dropped to her knees too and had a teaching moment with her child. "Mommy are you crying because I'm crying?" she asked me. I explained that when she hurts, I hurt, and that is a part of being a mommy. She said, "Well, I'm happy again, so you be happy too." I love her. I learn from her every day. It's moments like that I have fleeting thoughts that maybe she is beyond this earth, and I say a million tiny prayers that she won't ever be taken from me. The rest of our day was spent with our fingers intertwined, winking to each other in the rear view mirror, dancing around the kitchen to our favorite songs until it was time to pick her brother back up at school. She bravely walked back in, mask and all, down the long hall to get Max.He saw her, and his face lit up. I love that face. She wrapped her little arms around him. He accepts her exactly as she is, mask and all. I know all this makes us better, stronger people. It has cleansed my life, and let me let go of all things that don't matter. I know my children will be better people because of all of it, but that doesn't make it hurt any less in the moment. Later that same day Taylor asked, "Mommy, did you tell Max that kids were laughing at me?" I shook my head no, and she giggled, "Thanks!"  Of course I know kids will be kids. Feelings will be hurt, and hearts will be broken, but I hope that I teach my kids better than to make fun of those who are different. This journey changed us. We are not the same people thank goodness. We are stronger, wiser, and our hearts are softer. What an incredible blessing.

Happy Happy Day!

There was a time when I dreaded birthdays, aging, the whole nine yards. Now, it hurts my heart when people moan about another birthday passing. Really? Aging is a privilege! My three year old fought to earn her birthday this year, and I should be so lucky to have every fine line on my face...eek! Today is my birthday, and what a wonderful day it turned out to be. It feels like there was a divine intervention today, and I got a free pass. Taylor slept through the night without getting sick after ten hours of chemo! She woke up happy, and...knock on wood, has not been sick once today. Miss Thing even had a time out today, which means she was really feeling good. Our local radio station is doing a fundraiser for the Make A Wish Foundation, and asked me to speak on the radio to help raise money for our sweet girl's Disney trip. The wish was fulfilled in less than five minutes. Really?!  I'm still in shock. How many hearts has my little one touched? How many lives has this little warrior changed? My baby gets her wish, and of course there is nothing I want more than her happiness, and for her to be so blessed to have a 32nd birthday someday too.



Thankful

We have come so far. I look at my bald little beauty, and watch her lashless little eyes still sparkle despite all she has gone through. She is now a little girl, wise beyond her years, and has changed the hearts of so many. I walked past the bell today....the one I won't dare touch for 10 more treatments. I think about it ringing, and it makes me cry. We have so much to be thankful for. My gosh, thank goodness I found that bump. Thank goodness we have access to one of the best children's hospitals in the country. Thank goodness chemo and radiation are working. Thank goodness we have the most amazing friends and family who have cheered us on the whole way through this. We have ten treatments left after today! I can show Taylor on two hands. I can't tell you how amazing that feels. A nurse said, "I can't believe you are almost done, this has gone so quick!" But not for us, not for Taylor. While life goes on for most, we are still here, fighting for our girl, and so incredibly thankful all this is saving her life.

 

 



Denial..

Last night I asked Taylor if she wanted to go to the mall in the morning. She looked at me shocked, and said, "YES, lets BUY stuff." Chris seemed a little puzzled, and reminded me not to go crazy. Max woke us all at 6am this morning, bless his little heart for sleeping in. Yes, that is sleeping in for Mr. Max. I packed the diaper bag, lugged the double stroller in the car, and got the kids dressed. Taylor pranced around the house, Max followed clapping and cheering for whatever was making his big sissy so excited. I backed out of the driveway and into the snow/slush mix that was dumping from the sky. I could hear that inner voice saying, "You know you are in isolation, no mall today mama, go get some tea." So we drove to Starbucks, Max yelled "HOT MAMA!" to the barista, and Taylor stared quietly out the window. "Mommy, Mommy, let's go home, my legs are too sleepy for the mall today." My heart hurt, and I said, "I know lovie, mine are too." Isolation can be really lonely. Sometimes it feels like life is moving along, and we are just stuck. I love Chris for humoring me, he knew we weren't going to the mall. I love Taylor for being wise beyond her three precious years, and I love Max for being such a good sport. 12 more treatments. 12 more treatments. 12 more treatments...

Forever Changed.

I'm sure we all know the feeling of being smacked in the face....by accident....during a sport....what have you. That feeling where a rush of tears floods to your eyes, and like it or not, you are crying. Yesterday felt like that for me. Over and over, I felt the smack and the rush of tears. It wasn't from any sort of injury, just plain hurt. At one point Chris said, "You are losing it. You are rocking back and forth, and losing it." I was. And I will tell you why. Just a thin piece of curtain separated us from a six year old little girl that was just orphaned by her family. Left to battle cancer alone. I wanted to open the curtain and say, "You are coming with me. I am your mommy, and I will love you from now until the day I die. I will never leave you." But I didn't, I couldn't. I listened to a foster care worker get to know her, and prayed for her little broken heart. Some parents release their rights so their children can receive care from the state, some parents just don't want to deal with it, but either way, children get the short end of the stick. I gave her suckers and stickers, and haven't stopped thinking about her since we left.

Later in the day, Taylor finally found some relief from her anti nausea meds and drifted off to sleep. I always feel a sense of relief when she is able to escape the day through sleep. Chris was reading, and I was still listening. Above the whimpers from kids, hushes from parents, and bustle of nurses, I heard an eight year old boy saying, "I HATE you. I HATE you for always bringing me here!" His mother was stumbling over her words, broken, and softly crying "I have to bring you here." I wanted to go hug her. I wanted to get her some tea, wrap a blanket around her shoulders, and say "I know, I know, it's ok, you are doing an amazing job." But, I didn't. I walked past their corner, and asked her if he could have a sucker, and she nodded. He was happy with three...bless his heart.


I walked around the corner, and past a private room.There was a teen boy in there sleeping, and his parents were hugging. I felt an immediate sense of worry. Why was he isolated? Why did they look so heartbroken? Please let him be ok.... I went to the bathroom and splashed water on my face. I looked at myself in the mirror, not the way I used to..... I wasn't smoothing my hair into place, or dabbing on some (much needed) lip gloss...I was looking myself square in the eyes and telling myself  "Six more hours, you can do it. Fifteen more treatments, you can do it. Clear scans, clear scans, clear scans. Thank you God."

On our drive home I told Chris that I am changed forever now. I was a girl that would quickly change the channel when a St. Jude commercial came on, or heaven forbid I heard Sarah McLachlan start singing "Arms of an Angel," and an abused animal came on the tv screen. I couldn't look, it hurt too much. But now they are not faces on a tv screen, they are just on the other side of the curtain from us, with a name and a story. I can't change the channel, and I don't want to. I just want to help them.

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In the end....

I believe,that in the end only kindness matters. I believe, that you should always give more than you get. I saw a Kmart commercial today about a "Layaway Giveaway," and it featured this really fortunate looking woman, and flashed a big sceen tv and some other non-essential items. I wondered about the people who have three perfect toys on layaway, for their three perfect children. Those who are working an extra shift to make sure their kids know that Santa did not forget them. It hurt my heart. It made me feel guilty, and reminded me that the best way to give is without waiting for a thank you, a pat on the back, or a confirmation of how wonderful you are.

Last week, while we were staying on the oncology unit, Tay's little neighbor touched my heart. She is 6, with stage 4 leukemia. Her mom's neglect broke my heart a million times during our stay. Our little neighbor spent most of her time alone, very sick, and calling out for her mommy that was....unavailable. I tried hard not to judge her mom. There is no handbook for this, and I am very blessed to have a huge support system, but you better believe that when my baby is calling for me.... I will be there. She..... wasn't. So, I took care of her. We opened up the curtain, shared toys, songs, and anything else that would pass the time. At one point she was getting sick, so I stood by her bed,  and dabbed her head with a cool cloth. She looked up and said "you're pretty," and then slumped back in her bed. I wasn't pretty. I was tired and disheveled, but she saw kindness, and that was pretty to her. What a doll. What a precious, little, kind thing. The next day she was moved to isolation due to illness, and she cried out for me. It shocked me and broke my heart. Just two days after meeting this little girl, and she cried out for me. It opened my heart....my eyes.... to so many little kids...right here in Indiana who need loving parents and guardians. So I continue to wrestle with this...what can I do? How do I help the masses? It will come to me....and one day I will find a way to GIVE BIG.

 



Happy...

I can sleep. I have these beautiful night sleeps now. I don't wake in the night and cry myself back to sleep. I don't go peek in my little girls room, and beg God to let her outlive me. I cry happy tears. I don't cup my cries in my hands, or mask my eyes with my sunglasses. My tears don't burn my cheeks anymore. I have renewed strength. I know that I can fight through these last 5 months of treatment, and have my eye on the prize. I can see the light. I got my hair done, I made myself doctor appointments, I planned a date with Chris, and I bought some jeans that fit. I started caring again...... about me. I can't stop smiling. I can't stop dreaming of all that is to come. Clear scans, my gosh clear scans.



Patience.....

There is an old wives's tale that says NEVER to pray for patience.... good grief, I made this terrible mistake, and I have been tested. I am so tired. I work, love, pray, work, and work some more. I can't sleep at night. I pray myself to sleep every single night. I fall asleep mid conversation with God, thanking him, and begging him for the life of my girl. I'm exhausted.

So, I prayed for patience. The next day Taylor challenged me on everything. It's so hard to distinguish what is her being three, and what is her not feeling well. I have said it once, and I will say it again, that I am still trying to raise a lady. We still have rules, and our timeout corner knows Taylor well. My sweet little chunk of a baby boy has turned into a ferocious biter! He has the ability to make me swear like a sailor in the middle of Target while I unhinge his little jaws off my hand. Patience.

But today.....today was my ultimate test in patience. Taylor and I headed to the hospital around 7:30am. We had a really rough visit. There are days where Tay has fight in her. She gets MAD when the nurses do painful things, and then she bounces back. And then we have days where she doesn't..... and those days just break my heart in half. She gets quiet, somber, stops smiling, cries with no sound, it's awful. Today was that kind of day. On our way out, she was lounged back in her stroller, hugging her blankie, not speaking.  I just had to end things on a good note. She didn't want to say goodbye to the fish, didn't want to throw coins in the wishing pond (this has never happened)......so I pulled out my last trick, and knowing she is a girl after my own heart, I offered to go SHOP. We rolled into the hospital gift shop, and I said, "You were a brave girl, and mommy is SO proud of you, so you may pick out a few special things, let's shop!" She was SO excited, she clapped her little hands, and I knew she was smiling behind her mask. As quickly as I heaved a sigh of relief, I heard, "Well THAT is a slippery slope!" from a fellow gift shopper. I was stunned. It felt like this woman had reached out and slapped me. A SLIPPERY SLOPE? She was judging me, insinuating that I am starting a bad habit with my child. How dare her?! Of course I wanted to go into mama bear mode......but I didn't. I let her judge me. I know my heart. God knows my heart. I looked her square in the eyes and said, "Tay Tay, ANYTHING you want, let's shop!" This is not the first time, and it will not be the last time that people judge me. Patience.



I hope you dance...

We have started living again. There, I said it. I am letting go of all my guilt for keeping Taylor home and isolated. I just didn't know what to do. I didn't know what was safe. But we started living, and it feels GOOD. I scheduled play dates. I started going places. And today she danced. I watched her totter on her tippy toes, leap through the air in her precious pink tights, and interlock her little fingers with a little girl in her class to hold hands. She made a new friend. My achy, sore heart felt like it was going to burst out of my chest with joy for her. Tears were rolling down my face as I watched her prance about. This is her thing, her happy place. I found it.

Of course it was straight to the tub when we got home. Of course I know she may get sick. But we must start living. No matter what the outcome of all this is, we must live life out to the fullest every day in between. It feels good to have a reason to get dressed, to talk with other moms, to feel normal again. Scans are less than a month away, and I needed something to lift the gloom. To push away the dark cloud hovering over us. I can't tell you how much I want this to be over for her. There is so much to do in this short life. In the mean time, we are living.

 

To be a fly on the wall.....

Just in case anyone was in need of a good laugh, I thought I would share my morning with you. I get way too much credit for being some kind of super mom, so my hope is that this little story will put a smile on your face, and let you see my human side. Enjoy!

Now let me set the scene.....
My house is an absolute disaster. After 12 hours at the hospital yesterday, I just needed the house clean. A thought crossed my mind that I should forgo all birthday/anniversary/Christmas gifts, and ask Chris for 6 months of a cleaning service to come, it is that bad. I decided to take things room by room, and let the kids play along side me. I moved all our kitchen chairs into the family room, and made a fort for the kids to play in while I mopped. Things were going well, until the doorbell rang and all hell broke loose. Our sweet, wouldn't hurt a fly until you ring our doorbell dog charged the door in full attack mode. Max, although not walking, slithered all 31 pounds of himself to the back of my legs and began pulling himself up. I opened the door, and our dog raced right past the Fed Ex man, and out the front door. I am yelling, "Samantha Suzanne Magdzinski!!! GET. BACK. IN. THIS. HOUSE!" At the same time, Max gave a final tug on my yoga pants to stand himself up, and down they went.....Max and my PANTS. I locked eyes on the fed ex man....we both knew what just happened.....I yanked my pants back up, as Taylor informs me that we don't show our undies to people....it's private. Yes, it sure it. Nothing I had planned on showing our Fed Ex man that I see on a weekly basis. I brushed past him, Max on my hip, and Taylor standing in the doorway. I looked back and said, "Do NOT lock that door Tay" and I hurried to the neighbors to grab Sammie. I was barley off the front step and the door closed and clicked behind me....

Thank goodness for hidden out door keys, time out corners, and nap time! I would love to be a fly on the wall and hear our Fed Ex man's version of the story. I am sure it started out, "So, let me tell you about this CRAZY woman I deliver to every week...." 


Have a wonderful weekend!

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...

Vows

The past few weeks have been difficult to say the least. It makes me think about who I have become, the friends I am leaning on, and vows I made. I remember my first week home after Tay was born, thinking that I need to be the best version of myself for this little girl. She inspired me to let go of selfish ways, and live a life she could be proud of. I hope my "teenage Taylor" understands that every decision Chris and I have made regarding her treatment has been with love and careful thought....treating her cancer first.

My wedding vows keep replaying in my mind. We live them out now.... each and every day. To have and to hold ....never thinking Chris would physically hold me up when they tell me my two year old has cancer. For better or for worse...we know things can get worse, and we are so thankful for the opportunity to fight for our precious girl. For richer, for poorer....as we fight to keep what is ours..... In sickness and in health.....as we trudge to chemo every Thursday, and battle the side effects through the rest of the week. Health seems so far away with radiation looming, and a year of treatment still before us. To love and to cherish.... we sure do, we love our kids with every ounce of our being. And as for Chris and I..... I would say we are an 80/20 couple, 80% of the time I love him to pieces..... and 20% of the time he drives me crazy, and I want to banish him to the basement we don't have. (Hehe) I think that is pretty darn good! Until death do us part....please God let my children bury me when I am old, gray, and driving them absolutely nuts. And my gosh, were my friends taking those vows right along with Chris? Their support has been unconditional.

This blog is to document my journey of guiding my 2 year old daughter through cancer. My hope is that she will read this someday and understand how amazing she is.  My fear is that she wont..... but honestly, I will accept nothing less than a happily ever after at the end of this. My prayer is for my words & our experience to change a few hearts along the way. I hope it causes you to reconsider the way you love, the way you live, and the way you spend each day.

Mission accomplished

We are HOME! This week is finally over....(other than the post chemo side effects)....but we made it through! On the eighth hour of chemo today, Taylor looked at us and said, "I had fun today!" And there you have it.... we did it.... we fooled her into thinking she had a great day....mission accomplished!! She was so well behaved today...fighting through painful moments, bouncing back with smiles and forgiveness....it inspires me so much. It makes me a better mother, and reminds me that everything is in Gods hands.

I took a little break today and stepped out of the room. My heart was hurting, I was worrying about her, about everything...and I passed a teen couple in the hallway. The 17ish girl was bald, wearing a mask, and clearly there for treatment. Holding her hand was a 17ish, healthy looking boyfriend....laughing and looking at her like she was the most gorgeous girl that ever hit the earth. I wanted to pull her aside and say," Marry HIM, he is the type you MARRY." I should know, I married someone with the same type of heart as that boy, and it is times like this I thank God I married him for the right reasons.

Mothers Day

I'm not sure if it is the Mother's Day love, or the amazing benefit our friends hosted for Taylor this weekend, but I feel strong again. I feel so thankful to be a mother, what an amazing gift. I remember when Taylor was born, looking at Chris, and thanking him for the nicest gift he had ever given me...Taylor. I felt the same way with Max. My mommy skills have been put to the test this year. I try every day...everysingleday....to be a better mommy than I was the day before. I was raised by the best, so the bar has been set high. I was raised by a cheery, monogram wearing, homemade play dough making, Raffi music playing, beautiful inside and out kind of mother. She always put us first, she never missed an event, and she showed us through her actions how to be kind and giving. She let us each shine in our own way, and made us feel like we were the best things that ever happened to her. I pray every night that I can be half the mother she is. I need her now more than ever, and every time someone tells me I am just like my mom, I couldn't be more proud. Have a wonderful day.

Get sick, get well, repeat..

We completed another chemo session today. Taylor's counts were "borderline", (which seems to be where she stays), and no blood transfusion is needed today! We did not receive any news on the gene test.....hopefully by next week we will have some results.

Overall, today went fairly well, she didn't seem to be as stressed as usual....but I never get used to watching her cry. The worst part of our week is holding her down while they access her port, watching her scared blue eyes fill with tears, while I keep my eyes steady on hers, and convince her that everything will be alright. Inside I am dying. It kills me to watch her suffer. I want to tell her that we are done, never coming back.....but I can't.....and that is really hard.

We joke at home that mommy is the boss. Taylor often reminds Chris that....which I love (hehe), but in this case, mommy is not the boss. God is. All I can do is trust that she will come through this. I trust that God has big plans for her, and this is just the beginning of her making her mark on this earth. Even so, I kiss her a thousand times a day, and memorize the details of her sweet face. I miss her curls. I miss her chubby cheeks. I miss the look on her face when I pick her up from school (the thats MY mommy look). I miss her sweet smile when it is covered by her mask. But, my suffering...our suffering (ps. I love you Chris),... is nothing compared to hers. So, every day, I silence the fears in my heart she would ever be taken from us, and continue to fight for her. Every. Single. Day.

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.

       

Just Dance..

I tucked Taylor in bed last night, and as I was leaving she said, "Mommy, I had a fun day!" I could barley choke out the words. "Me too." Because it wasn't true. Most of our day was not fun. It was traumatic, scary, and uncomfortable. I am so thankful that I did my job, and she only remembers the fun. I wish my memory worked that way... Just hours after her treatment, her hair started falling out. Really falling out. I knew this would happen. I prepared Taylor for this, and when I tell her now that it will all be gone soon, she usually squeals "Yaaaay! Good!" But, I guess I hadn't prepared myself. I was frantically dusting her face, neck, and clothing off. I felt like I was drowning. Choking. I kept running my fingers through what is left, and felt heartbroken when I ended up with a palm full of hair. It's harder to forget she has cancer now. I don't know when I will see her hair again..

We ran a quick errand today, GASP!, I know, I asked her doctor and was actually encouraged to get out of the house. We talked about the new rules at the mall. I explained that we can't get out of the stroller, we don't touch anything... and Tay interrupted and said, "Because, because, because we don't want germs to get me!" Right. I could feel people staring at her. A cashier asked, "Is she ok? Does she have cancer? How SAD!" It felt like she slapped me across the face. Soon after, a little boy peaked into the stroller and said, "What is wrong with her mommy?" Enough. I was done with the mall. I started basically running through the mall, I had to get out of there. We started to head out of a department store where someone was playing a piano. I slowed the stroller so the kids could listen. Taylor turned to look at me and said, "Mommy, I want to go dance." So.... I stopped the stroller, got her out.... and we danced. The sting of the cashier and little boys words went floating away. Each day seems to be a mixture of happiness and heartache. I pray that it will always hurt me more than it hurts her. We continue to ride this out...focusing up.

Right place, right time..

Thursday felt like a scary movie I couldn't turn off... like a nightmare I couldn't wake up from. I will spare you the traumatizing details, but Taylor is not a fan of chemo days. I cannot explain how hard it is to let someone hurt your kid, even though you know it is helping her. A month ago she was a healthy looking kid who happened to have cancer. It hurt me when her oncologist was reading her "counts" yesterday. We could see on paper everything has dropped.... her body is getting weak. This is normal and expected for someone going through chemo, but it still hurts me. I'm overwhelmed that we will go through this every Thursday... I'm praying that it will get easier. I shopped around Target today looking for smaller clothes for her. I wandered up and down the aisles, and found myself sobbing on a friends shoulder. Where did that come from? I had been composed for days...ok maybe a day...ok maybe a few hours...anyway, it caught me off guard, and I am sure the poor woman ringing me up as well. I felt the lump in my throat as soon as I walked in the doors of Target. Maybe I missed my shopping buddy, maybe I didn't want to be buying smaller clothes for my shrinking girl, or maybe I just needed to hug a friend who was in the right place at the right time. I am certain that we could not get through this without our family, friends, and new friends whom we have never met. We are humbled to say the least. At the end of the day there is always so much to be thankful for, so many kind people like yourselves who continue to lift us up and dust us off. It doesn't feel like enough to say...but thank you so much. Please continue to pray for a complete recovery for our little girl, our little love, our little hero.

Answered Prayers

A little over 3 weeks ago I remember talking to a friend about praying for my kids. I told her I didn't feel like I prayed for them enough or the "right" way. That day, I said a prayer for them. The very same evening, I chased Taylor through our house, scooped her up, and noticed her belly wasn't as soft as normal. My mommy alarm started going off...I layed her on the floor and ran my hands over her belly and found a raised bump. I called my sister, and had her feel my nephew's stomach...no bump. This lead to doctor's appointments, surgery, and ultimately a diagnosis of cancer. I know in my heart that I was meant to find that bump. A prayer was answered. A surgical nurse came and spoke to us while Taylor was on the operating table.....she explained that the surgery was going to take longer than expected, and I knew right then it was cancer. I understand her position, and why she didn't tell us from the beginning, she wasn't 100% sure, why would she worry us? I don't understand her delivery of the news... Im hoping she thought an oncologist had already been in to speak with us.... She came in to do a post op check, and I asked her, "What do you think the tumor is?" Her response was, " Cancer. Some form of cancer." I wanted to reach across the hospital bed and slap her. Terrible, but true. It was like someone took a baseball bat to my stomach. I immediately crouched down to the floor. I didn't want Taylor to see me crying or worried. "Stand UP Mommy!!!" is all I remember Taylor saying. I stood up with a smile on my face, shaking, wide eyed. Chris and I fought back tears for the next hour or so until Taylor fell asleep. We took turns hiding in corners of the room, to break down. Escaping to the bathroom, running the water, and just crying. I would have sworn to you that day that the pain would kill us. It didn't. Another prayer was answered.

We spent the next week or so letting go. Letting go of our old life... our old dreams. We confronted every fear, every worry, and then some. We stopped looking at this situation as a death sentence, and started looking at it as a part of Taylor's story, the story of her life. These are the things that will shape her, and help her leave her mark on this earth. Look how many hearts she has already touched? It changed our hearts as well. It made us think about starting a foundation to help kids like her. It made us think about being foster parents to critical care kids, like her roomie, who have no one. It made us think about how we spend our time every single day, and what kind of parents we want to be. It changed our dreams, it changed the kind of people we are. What a blessing to be 30-somethings, and have that type of perspective. Yet another answered prayer.

I know tomorrow is going to be a hard day. Taylor has another chemo treatment, and I dread the awful side effects that go along with this life saving treatment.....but it is a life saving treatment. I remind myself that we are doing this to save her life. There is nothing that I wouldn't do to make her better. She is my heart... walking around in fancy party shoes. Before Taylor was born, she started out as a prayer, and each day I get to be with her is another answered prayer. God is good.

First Week Home....

I remember leaving the hospital when Taylor was first born, and thinking.. I am so not qualified to take care of this baby. I remember staying awake and watching her sleep, afraid that I was forgetting some important step in the night time routine. I remember having the realization that this little person needs me to survive, what a huge responsibility. I had that same feeling leaving Riley Thursday with Taylor...two and a half years later. We had a quick crash course in cancer, and were sent on our way.

Friday was difficult to say the least, I think I begged Chris to come home from work twice. Taylor was really sick. Max, my 7 month old baby, is teething and just needs me. Do I pick up my crying Taylor who needs comforted, or my crying Max who is hungry? Solution, I hold both.... I get no cleaning done, no laundry folded, and we all have a pj day. At one point I had both kids asleep, and just sat down on the floor. Our dog, Sam, plopped down in front of me and layed her head in my lap. I am her mommy too. Poor thing.

Tay needs to wear a mask when outside of our home, and she hates it. I can see why, I wore one with her leaving the hospital and it was awful. Today she finally gave in and wore it, so we could play outside. A whole new set of worries started for me. Will kids make fun of her? Will they be afraid of her? Will I have composure when people may make rude comments? My heart hurt while I watched her play. I missed seeing her smile.

Her oncologist suggested we "buzz" her hair this week to help prepare her for the physical changes. Im wondering if he suggested this to prepare us as well. Im not sure why it hurts me so much to cut her hair, it really is not about the vanity, I think it is more about her looking sick. I can't go through the whole Cookie Cutter's trauma again, so Aunt Kristen is coming tomorrow to do it...to make it fun. Her oncologist also told us that her treatment is actually 46 weeks, not 45, and really it may take longer than that due to normal delays in treatment and illness. I found myself wondering if I will hurt like this the whole way through? I feel stronger every day, but the hurt doesn't seem to fade. I can't tell you how much I wish it was me. My hope is that she will read these someday and it will help her understand her journey, her importance on this earth, her strength, and how much Chris and I love her. Keep praying for our girl.

Bitter Sweet

A few short hours after the sickest I have ever seen my child, she is dancing through our home, happy as a clam. Amazing. It was bitter sweet to leave today. We spent most of the day hanging out, monitoring Tay, and watching movies with her roomie. We had to pull the drape while Taylor slept, and I hear.. "Taylor's mommy?? Will you please stay where I can see you??" So of course I did. He wanted me to open his candy, throw away his trash, and any other "mom-ish" task. He loves our iPad, so when Taylor wanted to go to the playroom, we gave it to him to play with. He wasn't allowed to come with us, but after only a few short minutes of playing, he plops down across from me, his blankie draped over his back like a cape, with a devilish grin on his face. He is 4....not in very good health, and pulled a huge IV pole down the hall to find us. He was less than pleased when I told him we were leaving, and told us he "would NOT miss us". So heartbreaking. I know this won't be our last run in with this sweet little guy.
Normally night time is a time of worry for me, but not tonight. I am home, and thankful that both of my babies are snuggled in their beds. All the little things, like getting to be home with both kids, are turning out to be the big things for us now. This whole experience has opened our eyes to what really matters...health, family, friends, and faith. I know that God has been preparing us for this our whole lives, making us strong, just so we could be the right kind of parents for Taylor. The amount of support we have received is absolutely amazing. We could not be more grateful and humbled. Please continue to keep our sweet girl in your prayers. She has a rough road ahead of her, but we know she can do it! Thank you again

At the end of the day....

I am so proud of Chris, proud of my little girl, and a little proud of myself...hehe. We made it through another very difficult day. I can't say I did it with as much grace as I would have liked.... but its over.Taylor's port access was clogged, so they needed to remove it and reinstall one.....while she was awake. It was terrifying, traumatizing, and we are praying that the worst is over. It better be because I already promised her a swing set and a fish tank, and I am running out of ideas! Taylor slept through her first chemo treatment, and we are praying that her side effects are minimal. I know our nurse felt terrible...nothing was her fault, but everything seemed to be going wrong. At the end of her shift I hugged her, and we both cried. Such an amazing staff here.
I was very anxious about sharing a room. I was actually worried sick over it..... I was worried about privacy and maybe not so nice parents...but we ended up with a 4 year old pistol! He is actually pretty amazing, and I am half tempted to take him home with us. He has chatted with Chris non stop, stole several of Taylor's toys, harassed the nurses all day long, and demonstrated how he uses his urinal for Chris! Hilarious! But this little show horse is here alone...it is heartbreaking. I hear his little pole rolling across the floor, and see his sweet little bald head peak around the curtain, and I know he just wants to be with us. Chris has stayed within eye sight of him most the day, and it warms my heart and reminds me why I married him. Taylor is resting quietly in her pjs, and her adorable neighbor continues to chat with us. And rather than a simple "goodnight," the last thing we heard from the other side of the curtain was "Does the mom snore?". What a sweet little distraction he turned out to be. Please add him to your prayers as well.

Supergirl

The dictionary defines a hero as "a person of distinguished courage or ability, admired for his or her brave deeds and noble qualities." I have a hero, and she is 2.5 years old. She is about 3 feet tall, 30 pounds, and has a smile that can light up the darkest room. Can you guess who it may be?

My plan for the day was to be a brave mommy. I even put on a little mascara because there was to be NO crying today. But....that lump came back in my throat when the anesthesiologist arrived.... that ache came back in my heart. I was frantic in the recovery room when I felt like she was uncomfortable, and I left a trail of tears from the entrance of the oncology unit all the way to our room. I stood dazed while they went over the treatment plan for the day, and couldn't take my eyes off her adorable bald roommate...who was much further into the treatment process.

Meanwhile, my little hero announced that the anesthesiologist is not going to hurt her, and went back to playing the iPad. She demanded to ride in her stroller from the recovery room, rather than the hospital bed, and gave her new roomie a quick smile before dozing off to sleep. With tears streaming down her little cheeks, she continues to offer out her arm to the nurse, knowing what happens next is painful. Talk about brave & compliant.

The surgery went well, and chemo begins shortly. Chris and I have decided to see the unit as a place of hope. Today we are one day closer to getting our baby cancer free. She continues to amaze us with her resilience, and encourages us to keep bouncing back right along with her.