Monday, August 27, 2012

Thursday, August 23, 2012

Clear Scans

It's official Mal is still NED! No active neuroblastoma! What a great beginning to our weekend!

Tuesday, August 21, 2012

Our Crazy Week :-p

Monday :

We spent the day CLEANING house, which included scrubbing, washing, and doing laundry. My house is sparkling clean now :-) What a relief! Now we can go about our week and come back from the honeymoon with a nice clean house.

We started Mal's SSKI drops.

This weekend I finished EVERYTHING for the wedding so this week I get to relax, well sort of.

Tuesday (TODAY!):

I had to wake up at 6 to get ready to bring Mal to Helen Devos at 7:30, she had to have her MIBG injection. It was heartbreaking, the poor punky had to be poked 3 times to get her IV started. They only needed it for 2 minutes while the injected the Radioactive Isotope into her for tomorrows scans. She screamed and cried, and cuddled with me. But once she got it out she went back to her happy perky self!

I ended up calling clinic to see if they could do Mal's other IV tomorrow, I just feel more comfortable because we get the same guy everytime there. And he knows Mal is very difficult and won't poke her until he's confident that he's found a good one. Usually he gets it on the 1st try and it never takes him more than twice to get it in.

We also recieved some WONDERFUL news today about Mal's ultrasound. The cancer spots on her liver have DECREASED along with her Adrenal tumor! This is evidence that she in fact the chemo did it's job and she is STABLE! Her MIBG scan will show any active neuroblastoma cells, but with this ultrasound and low catacholomine numbers they are pretty confident that it should show nothing. So Once again we praise the LORD for these incredible results!

Wednesday: (This is my CRAZY day).

On top of the MIBG scan, we have a doctors apt for Jillian.

She was born with strabismis (lazy eye), and she wore glasses for 4 months, we patched her eye for a few months, and then she had surgery to correct it. Her eyes are PERFECTLY straight but we go in every few months for a check. She is nearsighted which means eventually she'll have glasses but I hope we can hold off until she's a little bit older. Her apt is at 8:45 and will run about 2 hours (If she cooperates)

Which poses a little bit of a scheduling conflict with Mal's scan which is at 11, the thing that stinks is Jill's eye apt is right across the street from Helen Devos but she cannot come with us to this scan. So Ryan has to bring Mal and I have to backtrack all the way home drop off Jillian and drive back up to the hospital. I haven't missed any of her procedures and I don't intend to this time either.

Mal's MIBG scan lasts about an hour, she will be sedated for the procedure, and she will be SO VERY hungry when she wakes up. But we will make do, Thank Heavens Ryan's Mom is watching Mal in the morning, she'll be able to keep her busier than I would.

Thursday : I get to do NOTHING! Ahhhhhhh a relaxing wonderful Thursday, I am looking forward to just snuggling with the girls.

Friday : Manicures & Pedicures with my Mom, Sister and Niece! It's going to be so lovely! Then we have to pick up flowers head back to my house and put together my bouquet. Then it's off to the Country Club to set up for the reception! Then Rehearsal & Dinner :-)

Saturday : I AM MARRYING MY BEST FRIEND!

(I will have some fine words for the weather man if this "thunderstorm" crap happens!)

Thursday, August 16, 2012

Sweet Sweet Babe

Ryan and I talked the other night about all the things our Sweet Sweet Babe has done. It amazes me.

For 1 this little girl put up with having a tube in her chest for 6 months, something that we hated but prevented her from having to be poked countless times. We are amazed looking back on it that she did so well, but this summer we have 100% enjoyed pool time, bath time, and nakey baby crawling around the house.

Something else that amazes us is how sick she really was. To look back on it, it was all we knew, but now we KNOW, we really KNOW our daughter. The struggling to feed her day in and day out, the constant vomiting, I can't tell you how many times I would just break down because of the vomiting. Not knowing if it was chemo induced vomiting or just baby puke but now I KNOW. Since she stopped chemo 3 months ago the sweet peanut hasn't puked once.

A great big milestone is the fact that she is off the bottle and onto a sippy cup. It took her 8 months to get the hang of just drinking out of a bottle and she gave me no resistance weaning from it either. I had a subconscious dilemma with the whole "bottle weaning" because yes she did just get the hang of it, but 2 I also wanted to skip trying to wean her and quiet frankly I'm just sick of washing bottles. So with that started a 1 day only cup and it lead to many many more days of just cups. She's a champ, she really is.

She is also crawling, and not her cute little inch worm crawling she's done for the last 2 months, but full out full speed crawling! No delay there!

We thought that chemo would have a huge effect on the milestones but she's proved us wrong.

We had her vision checked a month ago, that came back AMAZING! Our dear sweet Jillian had a lazy eye and she is pretty nearsighted (she will have to have glasses again eventually), so it was something that we had to make sure Mal didn't have either. But she's got perfect eyes, we're not quiet sure we're she got those from but we'll TAKE IT!

The girls had the great waffle war this morning, their very 1st big fight. I should have known that I should have made something else for breakfast because I only had 1. Mal was not happy with her toast. This fight is a blessing, she was diagnosed almost 9 months ago, and they had a hard time adjusting to each other. When Mal stopped chemo and we were home more it was a big adjustment for all of us. It still kind of is, I still am uneasy bringing them anywhere (I did today though! GO ME!), I still haven't found my routine back. The girls have blossomed, they love each other, and everyday they remind us of this. Wether it's a big "WUV OOOO SIS" or a "WAKEY WAKE MAUI", we know. It melts my heart to see that they're finally able to bond. What an incredible thing to witness, and yes I know I have years of drama ahead of me but for know I am going to gobble up their cuteness and enjoy it as much as I can.

My sweet baby Mallory will be 1 next month, NEXT MONTH! It is a reminder to us that we are so very blessed, that God has given us an amazing little girl, she is a fighter, she is strong, but she is also dainty, sweet and amazing.

And when we say "Sweet" baby Mallory we mean it 100%, she is the sweetest, kindest, most laid back baby on the planet. Sweet is definitely fitting for her.

Wednesday, August 15, 2012

To my husband to be :



I never have the correct words to say when it comes to Ryan. He is charming, witty, and hilarious. 
He keeps me grounded. 



It's been a tough tough year for us, and as we move forward I am getting a little anxious about our wedding. Not because of the wedding itself but because of all the things we have learned and grown from this past year. I feel like this is such a huge step, Marriage, the weird dorky couple is finally getting married, yep you heard it right, 10 days from now I will be dropping my last name and taking his. 


I really haven't though much about the whole "marriage" aspect because I've been 100% dedicated to this relationship since he asked me to be his "girlfriend", over 7 years ago. From our first kiss, through everything and anything.

He's my best friend, he's mine. 


Marriage doesn't change a whole lot for us, it doesn't change our dedication for one another, it doesn't change our house, it doesn't change our children.. I am convinced that no storm, no rain, and nothing can come between us. We have learned a lot, for this I am grateful for. To allow the past to be just that, the past, and move forth, and to show the world we've got this. 



I do believe that marriage is important, it is a commitment that I have held dear to my heart for a very long time (well ok ever since I saw that beautiful bride ariel barbie doll in the store that my parents wouldn't let me have). This year had it's ups and downs, I've learned a lot, I've walked away with a lot. And it's time to take a deep breath and jump in with both feet.

So heck YEAH, I'm marrying my BEST BEST friend in 10 DAYS! :-) (almost 9 EEEK!)

I LOVE YOU RYAN!

Our beautiful pictures we're taken by the WONDERFUL Brittany Hubble, she will also be doing our wedding pictures which I am SUPER excited about! She did a fantastic job capturing us being super silly :-)

Wednesday, August 8, 2012

It's a good day :-)

Although we couldn't have scans done yesterday I am feeling much much better today. Mallory is having an AWESOME day to top it off! She is feeling 100% better, no red eyes, no cough, just a touch of a runny nose so hopefully it should be gone by tomorrow.

We have scans rescheduled for the 21st & 22nd which is the week of our wedding which completely stinks, but it is what it is. So we're just praying that she's clear, that we can keep moving forward.

Today was a good day.

Mallory has exceeded our expectations, the little girl is crawling all over the place, she is always smiling, and she just adores us all. What a blessing, what a BIG BIG blessing our kids are. They are OURS, and we love them with all of our heart. It's been a long tough road, one of which we will be on for the next 3 years but it's a road that although we never wanted to be on, we are. And we take it for what it is, God has blessed us with 2 beautiful girls and that just is more than we could ever dream of.

This is our life, it's a little crazy, it's a lot of fun, and it sure is AMAZING.

Please keep a few of our oncology friends in your prayers as their kids are still battling this terrible disease. Emily & Kady are fighting this horribly Neuroblastoma and they can use all the prayers they can get right now.

Our Wedding is in 2.5 weeks. THIS IS CRAZY to me! I've been counting down the days. I must say planning a wedding in 2 months has been a riot, something that I thought was going to be so overwhelming but I have enjoyed every moment. It's going to all come together the day of and it's going to ROCK!

Mal's birthday party is going to be AWESOME, we are still planning on a balloon launch for the 23rd of September. September is also Childhood Cancer Awareness Month, so we will be honoring many kids who have fought, are still fighting, and those who are now with God. So if you read this and want us to add your kiddo to our list of fighters please let me know!

We will have a donation jar at her party for
http://www.maxloveproject.org/collections/maxs-love-project

This is an incredible family! They have helped us so much through Mal's diagnosis and treatment and they are total ROCK STARS! So we would love to raise enough money to donate some wonderful turtles to give to Helen Devos.

Tuesday, August 7, 2012

Scanxiety for nothing

Well we woke up bright and early for Mal's ultrasound (liver and tumor sites) then we walked into the room where they do the MIBG radioactive isotope injection to find out because Mal has a slight cold that they were not going to inject her today but wait till she is feeling better.

I am having a big pity party, when it comes to scans I just want to get them DONE and OVER, I get stressed about them from the moment they are scheduled and now we have to wait even longer.

I've been working with a therapist for 2 months now, and we're just now breaking grounds with some of my anxiety and depression. I had a session yesterday that really helped clear my mind and instead of preparing for the "what if's" life has in store for our family I need to focus on the present and what we have right now. And today I'm just going to state it how it is "THIS FUCKING SUCKS". Excuse my language but that's how I feel.

I know we just have to wait another week or so but seriously I had prepared myself, I had the plan all set, and then life once again throws us a curve ball. I had talked to Mal's clinic nurse yesterday and she said we'd be all set if she wasn't coughing, well aparently that just wasn't the case. Let me state again "IT FUCKING SUCKS".

So instead of getting a "package" explanation of what her scans look like we get bits and pieces and last time the ultrasound showed "small spots", they did not light up on the MIBG but they are still a cause for concern, they could be dead tumor tissue they could be volcanos waiting to errupt.

So who knows, cancer, wedding planning, scans, who knows what the hell else life has in store for us. But I will state it one more time because I really just feel this way today "IT FUCKING SUCKS".

Friday, August 3, 2012

Who Would have thought?


This little girl is hanging pool side, 6 months ago we would have never dreamed she would be doing this and here she is. This is Miss Mallory, our rock star of a kid, she's got the whole world wrapped around her tiny little fingers!

Thursday, August 2, 2012

Ohhh la la Vintage Little Misses







Our girls do really love each other until you make them sit together, then it's all done for! (Hence the super over dramatic "Sissy Has Cooties" faces).

Mal had clinic today, that girl has had amazing strides in the past 2 months. She started sitting, 2 weeks later crawling, 2 weeks later standing up, and now we have a CRUISER! Soon we'll have a WALKER! I would totally confess that I am not ready, but heck BRING ON THE WALKING! We've got this.

She has scans next week Tuesday & Wednesday. Ultrasound, Urine Check, & MIBG Injection (which the poor pook has to have an IV for) and then on Wednesday the big MIBG/CT scan (which she'll have to have ANOTHER iv in for). It's weird that I'm actually not nervous at all for the sedation process, it's the whole IV part of it, she doesn't sit still, half them times she's had to have them she's been poked more than once, usually around 3 times. So please pray that this goes smoothly for her. Not only waiting on the results but all the poking they have to do. I don't mind blood draws as much as an IV, especially an IV in a baby.

24 days till the wedding, am I nervous, not yet, am I totally ready, almost. It's been a crazy ride this past 7 years but I am super excited for our wedding!