Thursday, May 31, 2012

Tomorrow is "a" BIG DAY!


They bumped up the peanut's surgery to have it removed because the stitches came loose.
I am a basket case. This time in a good way.

6 months ago on December 1st they put it in her, and tomorrow June 1st they are taking it out. It's bittersweet. I know she is done with it and so are we.

We have not given Mallory a bath in 6 months, we have not been able to hold her without a shirt on, we can't leave the room if we're changing clothes so everything needs to be readily avaliable and you MUST be prepared, no more shimmy and shaking for blood draws (although she will have to be poked every month), no more heparin locking her broviac every morning, no increased risk of infection due to her having a central line, and did I mention she gets to show off that cute as can be chubby tummy of hers that is ohhh so cute and ohhh so kissable.

These are happy tears today, she managed to stump so many doctors, and then exceeded there expectations and rocked at chemo. Now there is a clear light at the end of the tunnel and it is so so so beautiful.

Tuesday, May 29, 2012

Look how our garden grows.

"Today you are you! That is truer than true! There is no one alive that is you-er than YOU!!"

-Dr. Suess

Miss Princess Pants decided that while I was inside with Miss Mally that she would grab the cup of paint I had laying in the grass and design her own headboard. At first I was mortified, but then the giggles set in and guess what it's the little things in life that matter. I think She did a GREAT job and it's a one of a kind piece. I will be adding the Dr. Suess Quote along with a few other personal touches as well. It's going to be amazing! :-)

Mallasarus has been a grumpasuras while teething. Her 2 top teeth our on there way in and her attitude is just not the same. Reminds me a little bit of chemo days except without the puking. She is sitting up on her own now as well, she's such a sweet sweet little girl.

This Perky flower is here to stay
there will be no more chemo today.

just smiles & giggles & maybe a nap

time to have lunch & time on a lap
the sunshine and blue skies are telling us
that God always is there
watching, protecting, love us
& helping Mal grow some hair

- Aunt Julie & Amy wrote the poem, I just adore it.

And hair we are growing, poor girls scalp is scaly but it is SOOOOO soft and SOOOOO blonde. I can't wait till she gets a little bit more and it feels all funny, maybe she'll even have enough to rub birthday cake in it on her 1st Birthday. Hehehe. (Which I should probably start planning a little bit seeing as how it's only 4 months away! YIKES!)

Jillian and I went and bought flowers today to plant, so this year our flower box contains FLOWERS instead of weeds, imagine that! How exciting! I've got to get more pictures tomorrow, I only worked out front for 3 hours, next up is our veggie garden that we probably should have planted a few weeks ago maybe, ummm not sure, maybe someone along the way can clue us in on that. We're new to this whole planting, working around the yard thing, we've only lived in our house for 4 years. Newbies hahaha.

So in all I've stayed pretty busy, this week Thursday we have a physical for Mally, blood work, and a meeting with the doctors to go over the official results of everything. 13 more days till Mall's broviac comes out. Maybe I can beg and they can get it out sooner. I was doing her patch change today and all the stiches around it have come off so we will see what they say.

Life in our house has been better, much better, less stressful. My house is trashed, there are dishes in the sink, laundry to be folded, I'm in mid painting mode in the living room, curtains need to be hung up and so on and so forth but ehhh who cares.

I have terrible terrible anxiety that comes and goes, search for a new therapist is on the agenda. I keep having bouts of nausea (NO NOT PREGNANT) at night that sometimes end up with me getting sick because I just can't seem to calm down. There are so many people that don't make it to the remission "phase" of treatment but there wasn't this HUGE HUGE weight that was lifted off of my shoulders like I had thought there would be. During the day I am so busy with the girls that I'm totally fine but once it's time to settle down and go to sleep my mind just keeps playing tricks on me. What if they didn't kill ALL of the cancer? And it's not just cancer, its thinking about driving in the car with the girls, what if someone hits us? What if my kid runs out into the road and gets hit? I can't live my life fearing things that might happen and I'm doing the best I can to not worry but it just doesn't stop. It never stops. I'm not so sure that it ever will. For right now we're going from moment to moment and it's working pretty well, I just seem to be stuck in the world of the what if's right now.

Our sweet babe was diagnosed 6 months ago today, not a day goes by where I don't worry, where I don't relive that pain of her initial diagnosis. "Neuroblastoma" - we had never heard of before and here we are 6 months later more educated than we ever thought possible. No M-Nyc amplification, Favorable Histology, You name it, we've heard it. It's been so painful, so so so painful to go through, to watch Mallory suffer through it all, and to see her now and how Healthy she is and not knowing through it all that the chemo really did make her so so so sick, so pale, so restless, it was exhausting, it's exhausting just to think about. I just pray that we never have to relive those days, 6 months seems short when you talk to other parents, some cancer's are treated for years, and some kids have to go on clinical trials because the chemo that they have doesn't work, I can't even imagine, 6 months has been enough but some people do it for years and years and years. HOW UNFAIR? HOW AWFUL?

It's been great to spend the entire month of May at home for that I am entirely grateful, I am grateful Mallory has had no surgeries, no chemo, no blood transfusions, no pokes, no nothing. I am thankful that Jillian has been able to go back to a little bit more normal, she is blossoming right before our eyes finally. Thank You Lord for taking care of our family and looking after us in these times where some days it's just plain hard.

Friday, May 25, 2012

More Summer, Why Not?

I may have gone a little picture "happy" lately. :-) It's been pretty hot in Michigan lately and poor Miss Malibu is a SAUNA! That girl is ready to rock her bikini, and being pretty chunky is really cute but does not make going through the hot weather easy. Yesterday I was cooling the poor girl down with a washcloth. But we do have a broviac removal date,


Which in my opinion seems like an eternity away, but ehhh it'll go by quickly I hope. I've had pretty bad anxiety when it comes time to sit still and relax especially bed time. This Momma is hovering the toliet all the time, it's a strange strange feeling to have it constantly and I know that it's just everything poor Mally has been through and I'm just struggling when it comes to her being in remission because now we're just watching it. We will continue to watch it for 3 more years, I just pray that it doesn't come back, that she never has to go through this again, that our family can just be our family with out the big CANCER word in the mix all the time. I'm trying to focus all my energy on my sweet little girls and summer which has been such a RIOT but it's definitely an adjustment.

Monday, May 21, 2012

A sweet sweet summer

This weekend was INCREDIBLE for our family, we enjoyed the hot muggy Michigan weather. We are feeling at ease with the place that Mallory is at finally, she did better than the doctors thought she would. She endured horrible chemo, surgeries, fevers, the whole nine yards and here we are "remission".

Remission is tough for me, they saw a few small spots on her liver still but they have no reason to believe that it is "active neuroblastoma" at this point. Because of these small lesions that are left she will have scans every 2 months to make sure that they are not growing. Her tumor is over 50% smaller than its original size and there was no MIBG take up on the scan so currently there is no reason to believe she would benefit from any additional treatment and that to the best of there knowledge she is in remission.

Remission is tough, we still have 3 years to wait before the deem her fully "cured" of cancer.

For now we are just thankful she made it this far, that we get to have a normal summer, once we get the broviac out she will be able to take a bath, go swimming (in her new 2 piece bikini), and lay around in just a diaper. After all that she's been through she totally is going to be "just a baby" for once. She's rocking some awesome peach fuzz now, she's almost crawling, and she's doing AMAZING. We are going to do our best to not dwell on "what if's" at this point, we're going to take it a day at a time, and just be thankful for the many many blessings in our lives.

Did I mention Mal is totally going to rock a 2 piece bikini? How awesome is that!

My birthday is on Tuesday (the 22nd), last year on my birthday we were blessed with the good news that we would be having another Daughter! A DAUGHTER! In ranks in one of the top moments of my life. I am so very lucky that I have 2 amazing kiddo's and my life is just so much better because of them. My birthday's are much better, holidays are much better, I couldn't imagine what we did before we had them. The past 6 months have been totally worth every tear, every fight, every breath, I wouldn't trade either of my girls for a "normal" life. My life is pretty stellar even with the chaos.

I am so amazed by how much we can breathe again, the past 6 months have been no walk in the park. Ryan and I had an amazing weekend, we are feeling great about where we are at, we climbed a giant mountain and we are making it. Things were rocky but its bound to just get better from here. He's an amazing hubadubs, my best friend, and the BEST DAD in the whole world. We're back to normal, we're happy, we're so lucky to have each other. He's my rock. I love him with all my heart <3

Jillian makes us laugh all the time, we totally have her saying "Sissy Goofball" now. She's been through so much too, 6 months of her Mom and Dad leaving all the time, no stability, and more diet coke than any 2 year old should ever have. We're getting back to the swing of things and she's bounced right back into place, and each and everyday we are just taken back by how awesome she is. We can't say enough good things about her, she's smart, she goes with the flow, and she is constantly making us laugh. We love our Jilly Bean! :-)

I will update again as soon as I talk to Mally's nurse hopefully tomorrow. I've got my fingers crossed that they can get her broviac out ASAP!

Friday, May 18, 2012

Piece of Cake :-)

Mallory 1, Cancer 0.

Ashley and I are happy to report that Mallory has been declared:

!!!!!!!!!!!   IN REMISSION   !!!!!!!!!!!

We finally got the call from the Doctor, all of the tests went as perfectly as possible. There is no need for further treatments, and we can have her broviac line taken out as soon as next week!


Wednesday, May 16, 2012

Many Many Prayers

Mallory was sedated today for her MIBG/CT scan, it went well. She woke up and flipped right over on her tummy and didn't even act hungry this time. We were so happy to see a familiar face in the sedation department, she has been with us through a few different procedures, she started Mal's IV last time she had to have her broviac replaced, and she stayed with her the entire time. They let us stay in the room until Mal is good and conked out. So we got to hold her sweet little hands and give her big old kisses on her forehead and she was back to her chipper self in no time.

We had a voice mail on our answering machine saying that according to the ultrasound the tumor has shrunk significantly, the MIBG/CT scan will be the tell all for us, but from the original ultrasound to this, it's GREAT NEWS.

I am hoping they will call us early tomorrow with the results of the MIBG/CT and just give us the game plan for the rest of treatment on Friday. But either way, us girls are staying home, snuggling up and having an amazing day.

We had many great things happen today, one was Mally pushed up on her knees today and scooted. What a HUGE milestone. She started sitting up a week ago. She is drinking almost 8 ounce bottles, up from 3 ounces a month ago. It's CRAZY how much chemo affected her and we had no idea because it was just "normal" for her, she barely cries, she's happy all the time, and NEVER throws up anymore. I wish it could have been this easy for her from the start. She deserves to only have to worry about eating, pooping, and sleeping from now on. (Yep, I said poop.)

Jillian has been joining us in praying at night, she is sooo sweet we always say "God Bless Mommy, Daddy, Jilly, Mally, Nana, Papa, Grandma, Grandpa and all your cousins and friends too" and she's been chiming in "Sissy and Nana" all by herself, and tonight she said "and Sissy, and Papa, and Sissy, and Sissy". So she must have known that Sis needed a few extra prayers this week too. It just melt's my heart, it makes me thankful that God Blessed me with these beautiful daughters that mean the world to me.

We put Mallory in the doorway jumper while we started Jillian's bath water and I said "Bath Time" and Jillian starts shuffling her way down the hallway only to stop because she HAD to help Mallory "jump-a-jump". So she pulls on the jumper and Mally starts bouncing and Jillian says "Sissy JUMPY". This is from the kid that had NO idea what to think when we showed her, her new little sister and for MONTHS Jillian has flat our ignored her. (Not complaining though, it's been nice to be able to leave them alone in the room together and not worry about what the 2 year old might do to the baby). It just is wonderful to see them interacting and I can't wait for the years to come. We had the girls close together because we wanted them to be best friends, and to play with each other, and to always have someone around and the last 6 months haven't helped them bond by any means so its just nice to see it finally happening.

Thanks Everyone for your extra prayers and support this week, I promise as soon as I get any news I will update as fast as I can.


We've had a lot of good memories this past 3 weeks at home. I am ready for Mallory to get the official "remission" call, I am waiting for friday, I am READY. I thought I would be a wreck this week but we've just enjoyed so much that it's out weighing the fact that it's scan time. We've been outside every moment we can, we've been singing our little hearts out, going to the store, going to Nana and Papa's and to Grandma and Grandpa's, we've been GOING places and DOING things and laughing.

WE'RE LAUGHING. God is good and no matter where we go from here I can say that this family will make it.

"Mahsgoby" - is how Jillian says "Momma's going to buy you". We sing hush little baby all the time and she's been singing it right along with us lately, it's amazing. My kids are amazing, down right incredible.

Saturday, May 12, 2012

It's Only Saturday and I feel accomplished for the weekend

I honestly have tissues on hand, lots and lots of tissues for this week. I know as the week progresses that each day will get harder more difficult and be extremely challenging.

But for once, I am feeling a little less heavy about scan time. It's scananxiety time (another Oncology mom called this period, totally right about that one).

We did Relay for Life this year, I had planned on doing Team Sweet Baby Mallory and was ready and signed us up thinking Mal would be in remission after 4 short easy 21 day cycles (Mid Feb), not 6 excruciating long tramatic emotionally exhausting rounds of "heavy chemo", what feels like hundreds of ER trips, thousands of blood transfusions, millions of clinic visits later, later here we are and It's May 12th and we are close to the goal but not sure quiet yet. So a few months ago I posted on facebook that I just couldn't do Relay, I don't have the time, energy, or motivation to put forth right now while focusing on Mallory. It seems like our family had been struck by lightening more in 1 year than should seem even be possible.

Then there was Katie, Al & their daughter Gwen. They were supportive with Mal from Day 1 and never had met us, they heard about us through the grapevine and just have been amazingly supportive. Katie asked if we wanted to combine our Relay Teams after seeing my facebook, their little Rock Star Gwen is a Baby Cancer Survivor also and they had Team Super Gwen signed up and ready to go this year for Relay, took us under there wings, and for our first year as Team Super Gwen and Sweet Baby Mallory, we ROCKED at Relay. Mallory and Gwen's Cancer Stories are so different, but when it comes down to it they are 2 very badass little girls who have fought like Hell, changed lives, and we couldn't be ANY prouder of those two! Even the name of her cancer I had never heard of before "Yolk Sac Tarcoma" (I think that's right, I'll correct it if I getting an email from Katie or Al lol).Gwen has been fighting Cancer her entire life, since the moment they saw there girl for the first time in utero.  Gwen will be celebrating her 2 year Birthday next month, over a year in remission already, we have been blessed to have met her and she is an inspiration to us for sure! We will continue Relay for years to come with our Super Girls as a Team.

I know, I can jabber, jabber jabber, on and on and on and you want to know how much we raised for Relay for Life with our girls this year.

We raised
$$$ 4,128 $$$

Our First Year was Phenomenal, hectic, we didn't have all the pieces together but in all honesty it kept us on our toes a little bit and next year we can do more now that we've made the leap this year and have a better idea and more time. Gwen's Dad and I managed to stay awake for the ENTIRE 24 hour walk (we were not 24 hour walkers), we didn't miss anything. By 9ish, we were slap happy and I wouldn't shut up, I was afraid if I stopped talking/moving I might lose some spunk, nope didn't happen, still hasn't happened. I hadn't convinced myself that I was staying up the entire walk until they did the opening ceremony and if our little 7.5 month old can fight cancer than this is a small small token of my thanks, I am the worlds LUCKIEST MOM. 

There was just so many inspirational things that Relay does for families. Our Girls were the smallest fighters there this year, I hope this will inspire some of the other childhood cancer families to join Relay for Life as well, everyone supported us, cried with us, hugged us and brought us right into there circle of families fighting cancer. We can tell them people about childhood cancer day in and day out  but come meet our daughters, take a look, come see, ask questions, because KID'S GET CANCER TOO!!!!

The support was incredible. I just am feeling inspired, I know this is the jump we needed to get going for the week ahead. I want Mal to be in remission so so so so so SO SO SO SO SO bad, I want this to week to be over, this journey to stop and a new one to start, we are READY to move forward.

Scans Tuesday & Wednesday and Results on FRIDAY!

So let the countdown begin, don't stop now, keep the prayers going, the good vibes going, and any messages you have feel free to pour in this week with anything even if we dont respond on everything we're listening1!!. It's pins and needless week and nothing small goes unnoticed! Mallory is a fighter and she's putting up one hell of a fight and she's not stopping yet!!!

Have a lovely Mothers Day tomorrow everyone! I know ours will be Great!

Thursday, May 10, 2012


Wednesday was Mallory's clinic apt where they went over the game plan for the next 2 weeks. They also checked her catecholomine (cancer marker screening). We go in the 15th & 16th for Scans, they will present her case in from of the tumor board and we should hear back later Friday the 18th about what our next steps are. Then we will have a meeting on the 31st if scans come back great on when to remove her broviac and how the rest of our appointments will go from here out.

My body decided that it would wake up miserable wednesday morning so I missed the meeting. I ended up going to the doctor for a fever, body chills, and a sore throat. I havent gotten sick the best 6 months since Mals been going through this, of course now would be the perfect time to get strep throat. Jill and Mal are staying with there Nana and Papa until I am feeling better. I slept 24 hours straight yesterday, i;ve taken a dozen baths, and yep still feel like crap. (Big Baby I know).

We have Relay for Life tomorrow, I am hoping I am feeling much much better to go. The contagious period will be over with, I just need to get it together now.