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!

PRAISE THE LORD. THIS CHAPTER OF OUR LIVES HAS FINALLY COME TO AN END!

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.

"Mahsgoby"

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.

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
.
.
.
.
.
$$$ 4,128 $$$
FOR LOCAL CANCER RESEARCH!


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!

Wednesday

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.

A Fun Fun Friday :-)

I am giving you all my love.

These are my girls, they are my life, and I am sure hope life can go back to normal for them soon.

We wish away Mallory's 1st year, not because we don't love our dear daughter but because her life has been pretty unfair. I wish I could take away everything that she's had to endure this year, that it could have been me, that the only thing we'd ever have to worry about is her being a baby.

I don't remember when she rolled over for the first time, when she got her first tooth, when she could push up on her arms because our focus was always on getting her through chemo so to us she never got any bigger, those things were second to cancer. I am SO SO Proud of my daughter. I know I made note of all those things but for every milestone she did she also had chemo, several blood transfusions (13 total now), and scans that trumped her milestones. The past 5 months have been a big fucking blur. It's been awful, painful, and trying. Here we are 11/12 days from scans, I just need her to be ok. I just need my baby to be ok. I need to see her grow up, for her to mouth off, to help her get ready for her 1st day of school, to throw tantrums in the grocery store, to celebrate every single birthday with her.


I love you Jillian Ava and Mallory Aleda, 

You will always be my HERO'S!

5 months

5 months since she was diagnosed, it has gone INCREDIBLY slow. It feels like we've been stuck in slow mode forever now, but 5 months have gone by, she's endured an unthinkable amount of crap and still rocking like nothing is wrong with her. I <3 you Miss Malibu.

Tomorrow is hopefully our last after Chemo visits to make sure her counts are back to normal, then its preparation for scan time.

I decided to occupy some of my free time by painting. I taped the hallway and cut it in tonight. It needed a fresh coat REALLY bad, we have flat paint all through our house and haven't painted it since we moved in 4 years ago. Little Fingers + Flat Paint = GROSS after awhile. So here I am painting, it feels GREAT to actually do something and freshen up our house a little bit. I am looking forward to going to garage sales this year to hopefully find some great finds to fill up some of the empty spaces we have too!

We had an AMAZING weekend as a family, we ate dinner together, we took a 3.5 hour nap on Saturday. We cleaned up the kitchen together, We laughed, we cried, and we had a really good time! :-) Each and Everyday we get to spend with these girls is a BLESSING.

I think she uses the exersaucer more than Mally does

I totally gave Jillian her first braid! WOOOHOOOO! (It's a small one but ohhh so cute)

Our Little Lamb is Cute as Can be!

The new "Wiersma" Memo board, my Mom is infact NOT allowed to paint while she watches Jill while we are off at clinic.

Jillian loves the Memoboard as well, although you can't really read gers at all.

Our Little Rock Star!

Sweet Sir Elmo

 

Our cat of 6 years died on Thursday. He just died, no rhyme, no reason, we just have no clue. So I am going to dedicate today's blog to him. He was a great cat (I know I sound like the crazy cat lady here), and I'm gonna miss him meowing at EVERYTHING. 

This is our luck lately.
He was a fat cat, yes, but seriously why did our fat cat have to die?

I really hope that most people don't find our blog to be overall dramatic, because lets face it my life is pretty much a Soap Opera.

I will however admit going out and getting drunk with my girlfriend last night and laughing about how much my life sucks. It felt GREAT, to have that big HUGE pity party that I've been needing, well yep feel free to say it "Your life SUCKS". I know someone will ALWAYS have it worse than our family but this past year we've been trampled on by life and yep IT SUCKS. So I need it to start looking up in May, so no bad news in may, just good news and lets just pray its the turning point for us. That everything will start going our way.

We are HOME!

Mally is finally unhooked from the IV pole, we drove home and she is playing contently in her exersaucer right now.

Today was a good day, Mally is feeling better. Although now I have Jillian that is sick, most likely she has RSV as well after talking to the doctors. So we are on house arrest and we have to closely watch both girls to make sure neither start having trouble breathing.

I met an AMAZINGLY beautiful woman today. Her name is Jillian and her husband works with Ryan here and there. She is a Stage 4 Neuroblastoma survivor, it was so empowering to hear her story and meet her Mom. I still have a zillion more questions for these wonderful women but to just meet them gives us hope that Mallory will make it through this.

It's hard to relate to our family if you have not been here yourself, remission is the term used to say the cancer is being "quiet", it could or could not come back. So remission is a GREAT word, it is not a word that brings peace, it does not bring reassurance, and we will worry for the rest of our lives about our dear daughter.

There are risks involved with intense chemotherapy, long lasting side effects. These we will have to worry about for the rest of her life. Something that we will be getting more information on in the next coming weeks.

A few of the things we've gone over is that Mallory will remain on Bactrium for 6 months after treatment to prevent Pneumocystis Pneumonia which she's been on since the start of treatment.

The will continuously monitor her Catecholamines and Leukocyte  numbers while in remission. They keep a close eye on the Catecholamines to make sure the cancer is not relapsing, once this number starts increasing it can show that the adrenals are excreting the hormone found in Neuroblastoma. We have to be very cautious about what we feed her 3 days before this test because certain foods can change these numbers and we don't want a bump where there shouldn't be. They will also do bloodwork to check to make sure her ANC and Leukocyte numbers. There is a chance from all of the chemotherapy she has received that she can develop a secondary cancer (AML Leukemia) which they will watch for very closely.

She will also have scans every 2-3 months to make sure her tumor is not growing since they are unable to re sect it. And make sure that it stays in remission.

We will have more information in the coming weeks, please keep us in your thoughts and prayers because even though she will hopefully be in remission it is still a long long road ahead of us.

We were supposed to start couples counseling this week Friday but I was just not feeling comfortable enough with who they set me up with. So next weeks challenge is to find someone that I am. For now Ryan and I are doing well, working on things slowly, and hopefully after the bulk of the stress is off of us we can continue and work towards a healthier relationship for not only us but for the girls as well.

RSV & Floor #6

We found out yesterday that poor Miss Mallory has RSV to top off crappy blood counts.

She isn't wheezing anymore thankfully, and they moved us to floor #6 because of all the kids on #9 (HMOC floor) have compromised immune systems and they didn't want her to give it to any of them.

So here we are waiting, waiting, waiting and more waiting. I had to cancel all my appointments for the week, because who knows how long we'll be here. The crazy life of an oncology Mom. I have only found 1 positive to being in the hospital and that's naps, LOTS and LOTS of naps. Something that is rare in our house since miss Jillian is stubborn.

Isolation

Day 2 turned into isolation fun fun. Gowns, Gloves, and Masks.
Mallory has some crud going on in her lungs now, so they tried a breathing treatment which didn't help and another culture to try and determine which kind of viral infection she has. Which is a swab up the nose which you can imagine a 7 month old LOVED. Yep poor girl cried herself to sleep. Still no word back on yesterdays blood culture and this new one but we should hear about both soon.

Hopefully if the blood culture comes back good and it is determined to be a viral infection and she doesn't need oxygen that we are able to go home tomorrow.

Room 902

were back inpatient because Mallory;s blood cultures that were drawn came back positive for staph infection. they are running another culture to check as well. No staph - 3 day stay with antibiotics. Staph - 10 days of antibiotics, joy

here we are again, so so so close.

3 am ER trip.

Last night I woke up around 3 am which was because Miss Mallory had developed a WICKED cough that concerned me. She has had watery eyes and a snotty nose since Thursday but it's just progressively been getting worse, and I decided that enough was enough and to bring her in. A CBC, blood cultures, and a chest x-ray later she has Bronchiolitis. So thankful that we didn't get admitted and we are just doing a 10 day course of antibiotics and a short 4 hour trip to the ER. Ahhhh the life of an oncology family.

I went to Walgreens to pick up her script and it said on the bag "your insurance saved you 105$". None of that pink amoxocilin crap for our daughter just the top shelf stuff please. Ryan and I chuckled about this and the fact that it came in a glass bottle also. :-p

Tomorrow we celebrate her 7 MONTH BIRTHDAY! I am so proud of my punky pie, this past 5 months has been grueling, exhausting, and horrible for her. She just troops along, I couldn't ask for a better kiddo. She's getting close to sitting up finally too!!! We are blessed <3 <3 <3

Mallory Aleda Wiersma born on September 23rd, 2011

Malibu - a week old

Mouser - 1 months old

Marshmallory - 2 months old

Punky Pie - 3 months old

Mallowcuppers - 4 months old

Sweetimurrrs - 5 months old

Cutie Patootie - 6 months old

(tomorrow I will update with a new 7 month picture of her)