Crummmmmmy Thursday

I just had a downright cruddy day.

1. I woke up late. (Only a 1/2 an hour but I had to power shower before we headed out for clinic and make sure my hair was pretty good so we could get our family pictures done.)

2. I threw a bunch of clothes in the washer, I showered, got the girls up, threw them (well ok not threw) in the tub, did my hair while they bathed, I hear a massive rattling downstairs. Lovely. Washer is not working right.

3. Made it to Clinic with Mallory, met with her oncologist, he showed us pictures of the original tumor and what it looks like now. Phew, makes you feel more at ease seeing that, the chemotherapy did a number on that stupid Neuroblastoma. We spent 3 hours total in clinic today, most of it waiting, they also took her urine to do a Catacholomine test.

4. As we're leaving clinic, Ryan plays a message on his phone, our car is officially ca-put. Totaled. Blah, way to go ash, way to go. At least I have a Great Husband that laughed and shrugged it off.

5. Made it home, laid Mallory down for a nap, hung out with Jillian while she played with Play-dough, I proceeded to clean out my "craft" closet which has been a MESS. I could barely shut the door, but I moved all the totes of toys out of their and into Jillian's closet (you know the massive amount of little leggo's, kitchen food, that she does not NEED all of them out at once.)

6. Got the call shortly after my cleaning spree that Mallory's numbers are elevated, not enough to concern the doctors, but enough to concern me. In August they were 19.4 / 13.5 and now there 33.6 / 16.7, as a mom the worst thing that comes to mind is "relapse", so my once again amazing Husband told me to just go about with daily life and try not to stress myself sick. But easier said than done, I just want to get to the year point, I don't want to wish away the time we have but seriously can we just hit a year, can we just put all of this cancer shit behind us, at least when we hit a year her chances significantly decrease. Because every time I think about it, I just want it to be DONE.  Every time a bump happens it makes me sick, it makes me so afraid, my fears surface once again. Cancer has enlightened me, but it has also taught me mortality, and life is precious and I just want this little life the rest of my life. Because I love her with all of my heart and more. So I'm going to try really hard to get through this next month, I'm going to try not to cry, and I'm going to try to keep living like I was before but sometimes it's just downright hard to deal with.Especially because they use catacholomines as a rough number, they can be effected by diet, but they also can be effected by diet, so its tough to know whats going on until her scans, but I just pray that it was the applesauce I fed to her because we followed her intake of the list we've been given to a T.

It's hard to know that my daughter is harboring a tumor no matter the size of it, I praise the Lord that it's smaller, but I just want it gone, I don't want it to be in her tiny little body, I just want it OUT.

7. Jillian and I went and bought felt and poodle's and rick rack edging, and after we got the girls in they're pajamas I headed off to my Mom's and she helped me sew they're cute little skirts up for Halloween so at least I have another thing checked off my list.

It by far wasn't the worst day I've ever had, but I've had much better days. Much less frustrating, much less emotional, but in each day we take we just keep pushing forward no matter the thing's life has dealt us, we just keep going. It's all we can do. Some days are just downright tough.

May the angels protect you, trouble neglect you
And heaven accept you when it's time to go home
May you always have plenty, the glass never empty
And know in your belly, you're never alone

May your tears come from laughing, you find friends worth having
As every year passes, they mean more than gold
May you win and stay humble, smile more than grumble
And know when you stumble, you're never alone

Never alone, never alone
I'll be in every beat of your heart when you face the unknown
Wherever you fly this isn't goodbye
My love will follow you, stay with you, baby, you're never alone

Well, I have to be honest as much as I wanted
I'm not gonna promise that cold winds won't blow
So when hard times have found you and your fears surround you
Wrap my love around you, you're never alone

Never alone, never alone
I'll be in every beat of your heart when you face the unknown
Wherever you fly this isn't goodbye
My love will follow you, stay with you, baby, you're never alone

May the angels protect you, trouble neglect you
And heaven accept you when it's time to go home
So when hard times have found you and your fears surround you
Wrap my love around you, you're never alone

Never alone, never alone
I'll be in every beat of your heart when you face the unknown
Wherever you fly, this isn't goodbye
My love will follow you, stay with you, baby, you're never alone
My love will follow you, stay with you, baby, you're never alone

Our little life.

Every day we make it through is a GREAT day. Even the not so good ones are great.

I haven't known what to write for quiet sometime now. I am happy that we get to be just a "normal" family, that does extraordinary things. Even if to most they are just "normal".

October is our CRAZY Birthday month, the one month of our the year were we are swamped with parties for our families. It feels great that we get to celebrate but even Mallory has been able to as well. Jillian adores her "Birday Parties with Birday Cake".

The funny thing about Jillian is the things she says. Each day it's something new.

"I needs it off, barbie is neekied and DAUNCING" - seriously kid, seriously. Barbies are not allowed to have clothes any longer, it concerns me just a smidge :-p

We went grocery shopping the other day and all the girl wanted was some "dinaSOOOUUUURRR toof brushes" to use with her "Toof paste".

Banana's are called "Bunumanums" and Milk is "Mickey Milk".

I am in love with this age, we're getting to the tough part where I must start trying to potty train her, and also the "no, no, no" phase. But ehhh it's still fun. Honestly it's been an amazing experience watching her grow. I am thankful for her sweet smiling face everyday.

Last week Saturday I was driving to a baby shower and was not paying enough attention and I stopped at a stop sign and saw that the street I had to turn on was to the left, so without thinking it entirely through I just went left. I then was hit by another car. One of the things I've struggled with for a long time is the thought of one of my children dying. I've had recurrent nightmares of pulling my dead child out of a car covered in blood. It's gotten better with the help from my therapist and finally realizing that these dreams are just a reminder that we are not invincible. Having been in an accident that thankfully everyone walked away from unharmed is a reminder of how fast things can be taken away from us. I just thank the Lord for watching out for us, for keeping us safe, and for teaching me another valuable lesson. I am sorry to the poor girl I hit, I am sorry for scarring my little Jillian, and to my husband who has had to deal with all the insurance crud. I am just so thankful we are safe.

Tomorrow marks another clinic day for Mallory. It is the usual urine catacholomine test, along with her doctor finally sitting down with us and showing us scans. We have not seen a scan since her CT was done when she was diagnosed, although I put all of my faith in her doctor to take care of our beautiful little girl, I still would like to see first hand what she fought and how far she's come. We got her blood work back that her Pediatrician ordered and it was what we needed to see to feel a little bit more at ease. I cannot thank the Lord enough for giving her such a great ped, who empathizes with us, who is open to suggestions, and who always leads us in the right direction.

Something I would like to share is how far Mallory has come. Seriously this little girl is a rockstar, if you could meet her 1st hand you would NEVER know anything was ever wrong with her. She is smart, witty, and stubborn and absolutely perfect. She mimics us talking, she only gets mad if she's hungry or big sis steals something from her (or it's bedtime), but she flows through the days with such grace and always a beautiful smile on her face. She has the sweetest laugh, it just melts me every time I get to hear it. She is also starting to stand up on her own without holding onto anything, another big milestone for her, she took a step today with her push toy, and what a sight that was. She just is resilient, just amazing.

I am also making massive life changing things, one of those involves my shotty house wife skills. Now to say the least we've had 2 kids. From going to adjusting to 1 (who started the world out with colic), then to being pregnant with a 1 year old, then to having 2 kids under 2, and then having our new sweet baby diagnosed with cancer, I really haven't had a whole lot of time to "adjust" to life. Not that I'd change anything about my life, but I can say first hand that I'm really not that spiffy at house wife skills.

We finally had our kitchen painted, and I LOVE LOVE LOVE it. I feel like know that we finally have our home "perfectly perfect" for us, it just makes it worth it to keep it looking nice. So made beds, vacuumed floors, and picked up toys are a must most of the days lately. I try to keep the sink pretty clean as well (don't look right now though, it's full of dishes lol), laundry that's just not my cup of tea, but at least I'm doing a better job at it. I just feel like I'm making huge strides to getting my house to the way that makes it the easiest for us to live in, so that we can enjoy our children to the maximum, and so that we may not stress over it every single day. I am just happy we're getting there finally, but of course I am not stressed about it, I've just been putting more effort into it lately and it feels great!! (I promise to go around my house and take pictures, because I am pretty proud of all the things we've done!)

Closure.

 Goodbye to Mallory's 1st year of life.
It was one hell of a ride.
Goodbye to the tears, we welcome this 2nd year of life with open arms. 

 Ok, with a lot more "Peek-a-boo's" and "Where is MALLORY?"
We get to now really embrace our lives, the one that God has blessed us with.
This little life.

and this one too.

 Somedays are tough, really tough, but nothing can compare to what this past year has been.
It makes the bad days seem not that bad.
When I have one child on my leg crying for attention and the other one jumping on my shoulders.
It's Not that bad.

I get it, I totally get it.

This year is about US.
It's about THEM.

It's about healing, healing, and moving on.
It's about forgiving those that abandoned us.
It's about forgiving the mistakes that have been made.
It's about forgetting the things we lost, and embracing the things we have.
It's about finding our purpose.
It's about becoming one.
It's about leaving the ugly behind.
It's about being selfish and embracing our children.
It's about working toward the ultimate goal.
And that ultimate goal for me, is to let go.
Get Free, and FLY FLY FLY. 

 These are OUR kids. They rock. They are worth every single moment of everyday. They are my prizes. It's about saying goodbye to "Sweet Baby Mallory" and saying Hello to our "Sweet Little Girls" Because this year it's all about THEM.

So as we continue this journey through cancer, through it's many different stages, we will hopefully get to enjoy many things that don't revolve around that anymore. There will be tests, there will be scans, but life gets to move on in between. And no matter which road it takes us, we're just living the days that we have to the fullest. So this is "Sweet Baby Mallory's" blog and we will continue to update, but we're gonna add some spunk, share some of our craziness with both of our kids, and keep it as a reminder of what we've done, what she's done, and what we're made of and how far we've come.

For us.
FOR THEM.

BALLOONS BALLOONS BALLOONS!

Let us know where they LANDED! :-)  They were let off from Wayland, MI!
-Leave a Comment Below! (or email us at sweetbabymallory@gmail.com)

1. West Farmington, Ohio

Here is a map of the reported balloon findings!
Google Maps (1 balloon recovered so far).

Dear Mallory,

 

Dear Sweet Baby Mallory,

Last year at this time we were anxiously awaiting your arrival. Tonight I've been in and out of tears, so thankful that this year is done for you little girl. It was tough, you fought like hell, something no kid should ever have to do.. You mean the world to us. Look at what you've accomplished not only kicking cancers butt but you made an impact on so MANY MANY people and you're only almost 1 (I can't say 1 because it's not "Official" till 4:10 tomorrow!)! You amaze us each and everyday with your spunk, laid back attitude and perseverance. I look at your scars, I look at everything you've done and you are our hero little lady. We are looking forward to this year, to watching you hit every single milestone, to helping you through everything. There are reminders from people that someday you'll be a teenager and I say "BRING IT" because at more than one point this year we didn't know if you'd even hit 1 (but please take your time getting there, we want you to "just be a kid" for as long as possible). We want to be there to watch you succeed, to help you through failures, when you're happy, and when you're sad. When you fall we'll be there to catch you. We don't care as long as we get to keep you forever and ever. You've taught us things that we never knew we'd have to do. Who would have thought I would have been strong enough to keep my head up when you were sitting there snuggling me and you would get so ill, when we would have to give you shots everyday at home, when we would run to the hospital at a moments notice because we wanted the very best for you. We just want the best for you because you deserve it. The love we have for you is in no way able to be expressed because our love is bigger than we even know. The day we met you my heart got bigger, your little tuft of blonde hair, those adorable big chubby cheeks, you had such a sweet charm about you from day 1, and you remind us everyday (That sweet charm is going to be tough to say "no" to). From Day 1, I couldn't imagine my life without you, and I never want to.

HAPPY BIRTHDAY DEAR SWEET BABY MALLORY!

And to many many many more.

Love Forever & Always, and to the moon and back.

-Mommy & Daddy.

Thank you Lord for allowing me to have a big enough heart to love not only her, but Jillian and Ryan also. Thank you for showing me even through the bad times that this family is a rock, that no matter what we will continue on with life with a new beautiful perspective, that sometimes you have to fall to learn how to walk. Thank you Lord for blessing us with this beautiful baby girl, a little girl that we love with all of our hearts. Thank You for watching over her and keeping her safe, we pray Lord that this will be the first of many many birthdays for her. We put all our faith in you to carry us through life no matter the obstacle, no matter the mountains we have to climb.

ALK GENE IS

NEGATIVE!!!!!!!!

We've only been waiting 8 months for this news and we got the news we wanted.

BALLOON LAUNCH!

This Sunday our Peanut is TURNING ONE!

WOW! Where did time go?
Well the first 8 months of her life went really slow, the rest of it, not so much.

We will be having a MASSIVE 1st Birthday Party for her!
You are all invited to join from across the world
We would love to see pictures if anyone does a balloon launch on the 23rd, make sure you take pictures! Even a <3 Sweet Baby Mallory sign would rock!

Please Let Us know where Our Balloons Landed, leave a message so we know!

You can email it to :  sweetbabymallory@gmail.com
MUCH MUCH LOVE FROM EVERYONE!! WE CAN'T THANK YOU ENOUGH!

After the intial diagnosis.

We started her first round of chemotherapy on the 21st of December. This weighed heavily on our hearts because Christmas was just days away.

We had time before chemo to go Christmas shopping, something that we had totally put on the back burner. We were very fortunate to receive many donations so the girls could have an amazing day. That month was tough for us, emotionally & financially.

Ryan was going to switch jobs, he had a job offer that payed very well, the day before she was diagnosed he accepted their offer and put his two weeks in. The job he was at he loved, he had been there for a long time. There were a few hitches when Mallory was diagnosed, one huge one was the benefits were rocky and he would have no vacation time, something when you have a sick child YOU NEED. The place he was and is still working at came back and offered him a better position and exceeded our expectations, something we always be forever grateful for. A few of his coworkers donated vacation time to him as well, seeing as it was the end of the year we had already used up all of his. Looking back on it, we are entirely blessed that he works with good hearted people and we are glad they made it work with us.

We bounced our Mortgage on top of everything that month. When you end up spending 8 days in the hospital unknowingly you need EVERYTHING you can possibly thing of, between food & clothes, and driving back and forth, and down to socks and underwear, our normal income wasn't cutting it. Thanks to everyone that helped us get back on our feet quickly, without you we would probably still be digging out. 

Our first experience with chemo was rocky, it took 7 hours to actually get a room. Which looking back on it now was not that big of a deal but at the time, I was completely irritated, annoyed, and upset. I just wanted to start the process of getting her better, a few hours didn't matter but it was still frustrating.

Mallory received 2 chemotherapy drugs over 3 days.

During these days she was also put on IV fluids that ran non stop to prevent any chemotherapy from sitting on her bladder and kidneys for too long.

At the hospital they give Zofran every 6 hours to prevent nausea which is a common problem with these medications.  She also was on constant heart monitors and oxygen as well to make sure she was holding good. We never had a probably with any of these through this round.

Carboplatin: which did not effect her much while she was receiving it.
Etoposide: this chemo PISSED Mallory off, the minute it would hit her system she would be inconsolable, after speaking with some of the nurses about this they informed me that some kids feel like there noses are burning. It also made her smell like metal (one of the weird side effects).

Luckily we figured out quickly the Etoposide was the one that was going to effect her the most so every time she had it we would give her benadryl before to help calm down what she was bothered by.

She had another blood transfusion before we left, the 1st of many chemotherapy induced ones to come.

Honestly we had NO idea of what to expect when we got home, we just knew we would be on house arrest with it being Christmas that was REALLY tough. Having to deliver the bad news of our absence of presence from seeing our family. We really didn't know what to do so we did what we thought was best, the less exposure to people the less likely she'd get ill. It was one of the most AWFUL things we've ever had to do, we missed it, we really did.

All things considered, we skyped with Ryan's family, it wasn't the same but at least we got to see them!!

Christmas Day for us was wonderful, Mallory was feeling a little crummy but not too bad yet. So we seriously opened gifts for 12 hours straight. We let Jillian lead us, if she wanted to open a toy and play with it then we'd let her, then an hour later she'd pick another one, so on and so forth. We had an amazing dinner donated to us that was so so great, I would haven't been able to pull off doing that myself at all. Jillian and I ran to my moms house to pick up the gifts for my girls and drop off the gifts we had picked up for them. So it wasn't the Christmas we had in mind but it sure was nice to spend all day enjoying out little punkies.

The worst part about this Christmas was it wasn't "normal" for us, it hurt, this Christmas hurt us more than anything. To not be able to spend some of that time with our parents, brothers, and sister and all of there amazing kids was the worst. This Christmas will be much better. I had looked forward to baking cookies, bringing Jillian out into the snow, and none of that stuff was accomplished.

Birthday Pictures (by her lovely Mom!)