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.

Mercy

As a kid, my sister, brother, and I would play the game "Mercy". We would interlock our fingers, and twist and turn each others hands until someone would scream, "Mercy!" because the pain was too much. Of course, I was pretty tough and usually won...wink. But, the concept of the game keeps popping in my head. We are trying to inform Taylor about cancer in little bits and pieces that we feel she can understand and handle. We have been telling her that her belly is sick, and the doctor's are working on "fixing" it. We explain that we have some days at home and some days at the hospital. I have been covering my hands over her hairline, so she looks bald, and saying that this is what your hair will look like. She looked at me wide eyed last night and said, "No hair?". Yep, no hair. Then she simply responded "Ok Mommy." Mercy.

I gave her a bath last night, picking off the little bandages from her tumor removal surgery, still scrubbing the stickies off from the monitor leads, and washed her curls for the last time. I combed through her long hair knowing that today, we would chop it all off. I rocked her in her chair before bed and we talked about the week ahead. We talked about her haircut today, playing with her cousin Drew tomorrow, and then heading to the hospital Wednesday. I explained that we are putting in a magic button so the nurses can give her medicine without it hurting (her port a cath). I said, "You have cancer baby, do you know what that is?" She said, "Yes Mommy, it makes my belly hurt." Mercy.

Today we went to Cookie Cutters, and it was an absolute nightmare. She screamed in terror, she begged me not to let them give her a shot, not to let them hurt her... It was heart wrenching. The stylist asked why I would cut off these beautiful curls, and I choked getting the answer out. Will I ever get used to saying that she has cancer? As each curl fell to the floor my heart broke a little more. I love her curls, we have no idea where they came from, but we love them. I found myself scooping them up off the floor. Mercy.

Of course I think her pixie cut is darling. I love her sweet smile, her pretty eyes, and most of all her amazing spirit. She got glimpse of herself in a mirror, and squeeled "I like it!!" She was so excited for the balloon she received, and pranced out of the salon. It reminds me that with each twist, turn, and painful moment, God gives me mercy.

The Details..

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.       

Worst Day Of My Life....

I have opened my computer up several times to write this, and I just can't seem to find the right way to begin...so with a broken heart, here goes. Yesterday we were informed that Taylor has cancer. We are devastated for our sweet girl. She is 2 and a half.... I cannot explain the pain we feel.... It is an absolute nightmare. We are still waiting on more information from the pathologist to confirm what "stage" she is in. We do know she will need chemo & radiation, and several procedures coming up. It is heartbreaking to think that this is going to be her new normal....

That being said, we will do everything we can for her. Our life is now dedicated to getting her well, surronding her with love, and doing fun things when she is feeling up to it. Just two short days after a major surgery she has her party shoes on & her sass back! Chris & I are taking things moment by moment. Keeping smiles on our faces and hope in our hearts. I ask that you keep us in your prayers. Pray for strength for our family, and for God to spare the life our child. Thank you again for your support, we need it.