Introducing Dr. Mallory Wiersma

Malipie and her Dada

Mallory has 2 TEETH! (I had to make her mad in order to get this wonderful picture :-)

These are just a FEW of the many WONDERFUL WONDERFUL Nurses that have helped us through everything, we LOVE LOVE LOVE them all!!!

Jamie was our nurse on Mally's last night of chemo. She was also one of the first nurses that really helped us through Mallory's diagnosis week. I honestly feel so blessed to have worked with her, she really brings a smile to your face. She is just AMAZING!

This is Dr. DeMarco, she was the resident doctor on when Mallory first was admitted. She Hugged us, cried with us, and by chance she was again the resident doctor on the floor on Mallory's last night! She was just incredible. (Along with MANY MANY of the doctors we have worked with!)

 

Mallory ADORES Laura one of our many techs, she just lights up whenever she walks into the room.

We were sent this AMAZING SUPER HEALING POWER TURTLE from "Max's Love Project". It is a great organization that sends kids fighting cancer these turtles. Please take a moment to check out this wonderful wonderful family that sends these out, they sent a case of 6 to us that were given out at Helen Devos, you can donate money to sponsor a case or even a single turtle for a child!

We still have to wait 3-4 weeks for her scans and will update when they are and as soon as we get any of the results back. Until then we are going to attempt to get back in the "normal" swing of things, and continue to hope and pray that the chemo did it's job. THANK YOU EVERYONE FOR EVERYTHING!!!! Please keep us in your thoughts and prayers through the next month as it will still be a tough process.

LAST NIGHT OF CHEMO

MALLORY'S LAST NIGHT OF CHEMOTHERAPY! :-)
Our little girl is a rockstar!!! WTG MAL!!! :-)

When you fight you fight HARD

I have so many things to be thankful for.

#1 is my WONDEFUL amazingly beautiful daughters. They have taught me so much, they have given me the will to keep going every single day. They are worth every tear, every ounce of energy I have, and I am forever greatful for the joy they bring to my life.

#2 is my AMAZING incredible significant other Ryan. Things have not been easy, and even though we have a lot of things to work on we keep going. He keeps going, he never gives up, and he has more faith in me than I think I do sometimes. So as much as this last week has hurt both of us, in the end it taught me a huge VALUABLE  lesson to never take for grantated a single day I get to spend with him. Relationships don't just work on there own, you have to fight to keep them alive, to keep going, and a lot of the time it's not the easiest path. But that boy I may bitch about so much about at times has been the biggest part of my life the almost 7 years we've been together and I am not letting him go. Even if it means re-evaluating our relationship, working on the weaknesses, and crawling through mud, I'm not giving up.

#3 my dedicated parents. They have been there through EVERYTHING, they have picked me up off the floor, listened to me complain, supported me, and taken care of not only me but my girls whenever we have needed them. For this I can never repay, I can only hope to mean as much to my daughters as they do to me.

#4 to all the wonderful people that have helped us in tough times. With your words of encouragement, your prayers, your cards, your calls, the gifts, every little thing has been noticed. Without you guys we wouldn't have made it this far, To every person that has helped us, You MEAN THE WORLD TO OUR FAMILY!

#5 to every kid that is fighting this terrible thing called "cancer". You are MY Heros! You do it with such dignity and grace, something I know that I would never have if I had to be in your shoes. To all the wonderful kids that have touched my life and even those I have never met or who are no longer with us we love you all dearly and will never stop fighting to find a cure for you all.

There are many things I feel very blessed for, more than I could ever write down. I wish I could write a list of every person who has ever said a prayer for us but we hit 100,000 viewers on our blog and that's just a lot of names to people that I will forever be grateful for.

I am feeling at peace tonight, I am sleeping in our house, in our bed, with my 2 year old in the room next to me. I know Ryan is having a wonderful night with Miss Mallory. She only has 2 more chemo rounds left and in 3 weeks we will have all the pieces of the puzzle put together and a better indication of where to go from here. This should be her last round of chemo. Her catacholomines where slightly elevated before this round of chemo but it could be because of "diet". There is a long list of foods that you are supposed to avoid before this test and we did not ever get the list since she just really started eating solids. So in 3 weeks when they re-run the numbers she will be on a "formula" only diet so that hopefully we will get better numbers. We should hopefully have dates set for her MIBG, CT, and ultrasound of her liver by Tuesday (the day we get discharged from the hospital). So we are going to need all the prayers we can get leading up to these scans.

I am looking forward to my 1st therapist appointment on Thursday, hopefully I will learn some new coping mechanisms before we get closer to scan times. Last time she had scans I was getting physically ill from all the stress of them.

The ladies from Baby center raised 3,031$ to pay for Mallory's ALK test. THANK YOU THANK YOU THANK YOU! One more thing that we don't have to worry about because of a very generous random act of kindness. You Ladies are once again AMAZING! THANK YOU FOR YOUR SUPPORT!

We love you all, good night!

Round 6!!

Day 1, Round 6 is done.

4 more days left!!!!! Wooooohoooooo!
MALLORY IS AMAZING!

6 months old and her 6th round of chemo. I cannot believe when we started this she was almost 7lbs smaller, 4 months younger, 5 inches shorter, barely smiling.

Update:

Baby Center has raised us 2,400$ for the test! WAY TO GO GIRLS! I sound like a broken record but THANK YOU THANK YOU THANK YOU!!!!

We leave for chemo in 20 minutes, these days are incredibly long because you have to sit in clinic, get her blood drawn wait for results, they run fluids, see the doctor for a full physical, then they start the process of getting her a room. I got lucky the last time we had Chemo and my sister sat with me (It really is a boring day) but today I have the hunger games to keep me busy I suppose. Plus some extra Mally snuggles are always welcomed.

You can totally see her 2 teeth when she smiles now. I've got my camera ready for LOTS of pictures for her last round. Hoping we can get a picture of Kady and Mally together. Sending my Mom for cupcakes to celebrate Kady and Mal's last round of chemo! SO PROUD OF OUR GIRLS! Kicking Neuroblastoma's ass together!

I start counsling next week Thursday. Looking forward to curbing some of this anxiety and laying out all of the big issues I'm having. Denial is setting in, I just want to go home. I want life to be "normal" again. My girls need to go home, they need to sleep in there own beds, I had a hard time packing for chemo since I'm totally out of my element. ARRRGGGGGGGGGG, I am just feeling so f$^%ing lost right now.

ALK Test

We first of all want to say Thank You once again for all of the help from Baby Center and everyone that has helped us to raise the money for our sweet peanut to be able to get the test.

I was finally able to contact the hospital and talk to our social worker about this. He spoke with Dr. Sholler who believes that this test does NEED to be done regardless of the insurance company. The hospital is going to help us FIGHT them to cover it. I told them that regardless of the insurance we want it sent out as well, so if we recieve bills in the mail we have over 2/3rds of the money to cover the test. We will not just send the insurance company a check willingly, we will FIGHT it! I told them if Mama Bear needs to call that they can give me all the resources I need to back our claim so that I can have all my ducks in a row when I confront them about the issue. Another issue is the test is out of state (Childrens Hospital of Philidelphia) because they do not do it in Michigan yet, although Van Andel Reasearch Insititute is working on getting the stuff to test for the ALK gene here eventually.

They are sending the test out as we speak!!!

So we will keep everyone up to date on the progress of this but for now we are rejoicing in the fact that they are finally sending it and we will have answers hopefully soon.

A piece of the pie and a step in the right direction

Today has been grand. Just spectacular for many different reasons.

For one the ladies from the September Baby Center Board have created a thread to help out family paying for the cost of the ALK test. They have raised 1/2 of the money we will need to pay for the test and we cannot THANK THEM ENOUGH! You ladies are a bunch of rock stars!

This generosity is just amazing! I will still be fighting the insurance company tooth and nail to pay for it, this being said that if we are able to get them to cover the cost we WILL be donating all of the money to support Childhood Cancer and to help all of these beautiful children. There are so many amazing organizations out there that have supported us through these times and many of the kids we have met need just as much help as we do. For everyone that has ever helped us just know we have your back if anything were to ever happen to your family. We thank God each and everyday for the outpouring support and love everyone has shown us and NONE of it goes unappreciated.

Some more amazing news that we received today was that one of the dear sweet peanuts that has stolen my heart had AMAZING scans come back and will be finishing her home run stretch of chemo along with Mallory at Helen Devos this week. Her family means the world to me, her mom was one of the first people that opened themselves up to me at the hospital. Her daughter just turned 3, she also has Stage 4 Neuroblastoma as well. Mallory and Kady were diagnosed right around the same time, although they have different protocols (because of the difference in there age) we have been able to share our stories openly and help support each other through every step of the process. Kady will be entering the next step of treatment, but finishing chemo is amazing for her. GO KADY GO! We are rooting for you girly!

Ryan and I had a nice long conversation as well. No harsh words were said, we discussed our situation, and we are making progress.

In the nicest way possible he opened my eyes to the bigger picture "I am an overall emotionally sensitive controlling biotch" ok so he totally did not call me a biotch but I couldn't think of a better word lol.

In our world there has been Ryan "the provider" and me "the caregiver". I have been a stay at home Mom for 2.5 years now, my world revolves around taking care of the girls, going to appointments, and cleaning and maintaining out home. Ryan has been providing for us by working his butt off, making sure all of our basic needs are met, and creating the least stress possible financially for our family. This scenario WORKED for us, we had to no issues whatsoever UNTIL Cancer came into the picture. I am unable to take care of the things I used to because my vision is fogged by cancer, it has been blinding. It smacked me upside the head and took away the control that I have. So since Mallory has been diagnosed and there is NOTHING I can do to better her outcome I have allowed myself to fall apart. I can no longer remain in the "role" that I was so comfortable doing because there is just no time to focus on the things that I was once doing. I take things out of context, fly off the handle, and mistake the simplest statements and turn them into something they just are not. I am for sure at fault for this, it is my personality type (THANKS MOM! hehehe). I would like to clarify the fact that I said "that Ryan gets to go to work", I did not mean this in the way that it came off online. He works his ASS off to provide for us, something simply I cannot give him enough credit for. I am very blessed to be able to stay home with my children, something so many moms do not get to do and for this I am very grateful. I have not been able to find an "escape" and part of me is jealous that he has something that will take his mind off of the situation, where I am the "caregiver" for our children and for the past 2.5 years it's been my main focus and it's ALL that I've focused on. I wish I was able to allow myself to get absorbed into something to ease what is going on in our lives is what I meant (and Ryan is a total geek about the AMAZING things he does and I wish I could steal some of his enthusiasm and intelligence!). I am very proud of him, I have never for one second thought that he was not a "GREAT" provider for our family. We both have definite sure things we need to work on, so guess what we're doing? We're going to work on them! I love Ryan with all my heart and he loves me just as much.

We will be spending some much needed time apart, not because we want to be separated or live in different houses but because we need to. To get ourselves back in a better place. I talked to my primary doctor today and will be enrolling into counseling to get my head back in the game, but we will also be working together to save our relationship and better ourselves for not only us but for Jillian and Mallory. We are hoping by taking this step that it will lead to a more stable, loving, and enjoyable environment. So that down the road we NEVER EVER EVER come into a situation like this again. We have realized that our relationship will never survive if continue to keep going the way that we are, so we have 2 chooses, give up or fight. And we are not a family that is ever going to just "give up".

So Ryan Wiersma you are a ROCK STAR of a Dad, an AMAZING AMAZING Significant Other, times are tough and the road is bumpy but by golly we're gonna make it through this. Our girls are going to grow up knowing that each and everyday we fight for our family. That we are in it for the long run. And Once again people will be envious of our love for each other, our dedication, and our strength. I LOVE YOU MORE THAN WORDS CAN EVER SAY!

$3000

Is the amount of money that sending out Mallory's tumor sample that would determine if she had the ALK mutation or not. We have THREE insurances and NONE of them will cover it. We have to sit down with the social worker and decide what to do. Although it doesn't change her course of treatment (it was SUPPOSED to be sent in February after her 2nd biopsy and NOW we are getting the insurance problems). This means a TON when it comes to Jillian, If Mally heaven forbid relapses, and any future children we might have being at risk of developing Neuroblastoma. And now we have to chose whether its worth the 3,000$. We are hoping we will be able to talk to Dr. Giselle Sholler (She is AMAZING) about this more specifically to understand and comprehend our descion and have our choice backed by one of the TOP leading Neuroblastoma and Medulablastoma Doctors.

Mally and I sat in clinic all day, waiting for CBC (which was GREAT minus hemoglobin which was 7.5). Then we waited some more for the blood to come up so she could get another transfusion. Which took 3 hours because she was receiving a LOT of blood today.

It's funny how I can tell how big she's getting by the fact that her blood no longer comes in a syringe, and she upgraded to the bio-patch. She's 16.5 lbs already! GO MALLY GO! We can thank Megace for helping her eat, she would be a SUPER twig without it. Seriously I can't get the girl to stop eating, maybe once she's done with chemo she'll actually sleep through the night (I can ONLY hope.)

The girls & I are currently staying with my parents. Ryan and I have been through a lot through these last 4.5 months and as time goes on the stress has not decreased. We are nearing the end of Mallory's chemo, but we still have years of scans, tests, and blood work left for Mallory. I have realized something that I have been dealing with that has NEVER been an issue is I have super bad anxiety when it comes to dealing with Mallory's cancer. I honestly have been exhausted taking care for her day in and day out, the difference between Ryan and I is I express my distress and he does not. Our coping mechanisms are entirely different, we both love our daughters, we love each other, and this has been just as hard on both of us. Postponing our wedding, the thought of Mallory not making it, and the devastation of what could happen finally EXPLODED. He wishes he could be in my shoes taking care of the girls, and I wish I could be in his shoes and getting a break from this. We love each other, we always have and we always will, almost 7 years together is an AMAZING feet, something that we will see soon. July 8th, 2012 we will be celebrating a kickass, fun, loving, and tough anniversary. We will have many years of dealing with Post Traumatic Stress Disorder because of Mallory's cancer, something that I will be contacting a therapist tomorrow to get the ball rolling on so that I can get on a better path to understanding, to helping myself cope better, and to allow our family to only be engulfed with all the love in the world.

For now I am staying here, we are taking a break. But Wednesday night, I am dressing all fancy shamancy and will be waiting for my handsome chariot to arrive. I think some good old fashioned dating will help us and therefor we are doing it. Then chemo weekend our Mom's are going to help with the girls on friday night so that we can spend an entire day and night together working through everything. It's a healing week. Both nights are much needed to get back on our feet. This is OUR life, this is OUR struggle, and we will prevail! WE WILL PREVAIL!

I adore Ryan, Jillian, and Mallory.
Ryan is my BEST FRIEND, big LUG, and FEF and I wouldn't be 1/2 the person I am if it wasn't for him. He makes me a better person and I can't thank him enough for that.

Jillian is my little light, she is the "oof" in goofball, she makes me laugh, she just adores her momma. And I adore her. She can cheer anyone up, on any day of the week, she will sing to you, dance in the silliest ways. She's our little whimsical child and we adore it.

Mallory is my little inspiration, she is a stubborn stubborn baby but that's why she's kicking ass and taking neuroblastoma down. So we can have many years with her stubborn little attitude and that sweet smirk that could just about convince me to buy EVERY single thing she would ever want (Ryan will have to lay the lay down with this one for sure)

Seperated.

My life has been torn apart. My heart is broken. My mind is Heavy. My family is my entire life, my dedication, worth every fight. And here I am broken, torn into a million pieces, and I'm not sure where to begin to fix the pieces.

I don't know what to do, I can't imagine my life without Ryan, without Jillian's face light up everytime she see's him, and the heart melting giggles Mallory gets from his ticklish beard filled kisses.. This is my family. These are the important things, to simplfie our lives so that we can live like better people.

How do we fix this? Our lives were PERFECT a year ago, And here we are, not perfect, not anywhere close.

I just remember so many things, they way he kissed me for the first time, the late night car rides listening to music, how he plays with my hair, the day he asked me out driving down the road on July 8th at 11:11. Finding out what our kids we're going to be "GIRLS", the birth of our first daughter Jillian the perfect 8lb, 21inch beautiful little girl. The 2nd birth of Mallory at 7lbs 10oz, 19.5 inches long perfectly perfect too. The joy we had meeting each of these beautiful souls, and how are souls seemed to be more and more entwined. And here we are "Seperated". Our dinner ended up with me walking out, tears streaming down my face, calling Erika to come pick me up on the side of 28th street, I wanted to throw my engagement ring into the road. I wanted to SCREAM at the world. FUCK YOU WORLD. FUCK YOU CANCER. FUCK YOU,

We were the PERFECT family, 7 years togther, 2 beautiful daughters, a beautiful house.

We've never been here, never thought we would be here, and here we are, I'm not so sure

I'm not ready to give up, but somehow we're at this rock bottom shit hole that we've been dealt.

I don't know what to do, I don't know how life got this way. It's not over, in no way over but for now "seperation" seems to fit our situation the best currently. So seperated we are, it might last a day, or a week, or a year. But we've got a lot of things to figure out.

I love you Ryan Wiersma.
I love you Jillian Ava
I love you Mallory Aleda

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find
'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give upI
 don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am
I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.
I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)
I won't give up on us
Even if the skies get rough
I'm giving you all my loveI'm still looking up

< insert negativity >

life wasn't supposed to be this hard.
life wasn't supposed to be filled with more tears than smiles.
life wasn't supposed to have so many arguments.
life wasn't supposed to be this.

I cried multiple times today.
Not good tears, not just for my daughters but for our family.
HOW UNFAIR IS CANCER?

Lay down a list of what is wrong
The things you've told him all along
And pray to God, he hears you
And pray to God, he hears you
Where did I go wrong, I lost a friend
Somewhere along in the bitterness - The Fray "How to Save a Life"

Clinic Visit and being HOME!

We are so ecstatic, we have been home for 6 days now!!

Mal's clinic visit went pretty good yesterday, although her numbers are SUPER low they should be on the mend soon.

Her white count is : 450 which is super low but she's been at 50 before so we'll take 450.
Hemoglobin was : 9.1 (transfusion on Thursday for sure for this!)
Platelets : 57,000 (transfusion for this also, they usually transfuse below 30,000 but because she's so little they will do it anyways.)
ANC : 140 Which makes her SEVERLY nuetropenic, but she did not hit 0! So her body should recover quicker. YAY! It's also probably the big reason why she hasn't gone to the hospital for another admission, YAY! YAY! YAY!

Depending on what her numbers are on Thursday we may be able to go somewhere for Easter! Something WE really want to do! No church, but maybe lunch with Ry's family (as long as everyone is in good standing health). It's been 4.5 months since I have seen any of the nieces or nephews and I SERIOUSLY miss them like CRAZY! I am sure they miss Malibu as well so it would be nice to actually be able to go.

I had a GREAT morning so far, Jillian woke me up by knocking at the door saying "KNOCK, KNOCK, OUT OUT!" hahahaha and Mally slept till 9:45, wooohooo! Now we're just waiting on neupogen to show up and maybe a nap is in order!

Happy Weekend

We made it through the ENTIRE weekend with nothing but a slight fever, some grumpiness and a trip to the store for pedialyte and beer (obviously the beer was for me :-)

We have clinic in the morning, I continue to hope that she will continue to go without a fever especially since this weekend is Easter coming up and this family would like to spend a holiday with our family without thinking about cancer, blood counts, and etc etc.

But I am stocked up on sugar cookies, eggs, and stuff for subs if all else fails and we spend the day at home if her counts are not high enough to do anything. Hopefully this is the last Holiday we have to spend on house arrest if we end up staying home.

I had a WONDERFUL afternoon with my Mom today. We went and saw The Hunger Games, then went shopping. I am super excited since Ryan and I decided that we should post pone the wedding, I picked up some new dresses for our 7th Anniversary Vacation Vacation. Instead of the wedding we will have a no frills, no stress, and just NOTHING to do for hopefully a week. I just want to stay at a place near a beach, with a slider to an ocean or lake, and RELAX. It sounds amazing, I know it will bring the healing our relationship needs. We are managing, I am stressed, he is stressed, we have just not had ANY time for ourselves so I know this is just want we need. Cancer has taken a huge tole on this family but it will not defeat us, we have been through wind, fire and rain and we will stand tall at the end of all of this.

I am just praying that God looks after my little girl. There are many misconceptions about the word "remission".

Remission is the state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer or inflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission.

Mallory still has a chance of the Cancer coming back after she enters the remission phase, she will not be deemed "cured" until there is no relapse of the cancer for 3 years after treatment ends. This scares the shit out of me. She has gone through so so so much and I pray that she falls into the 85% of infants that do not relapse but that 15% chance straight up frightens me.

I know everyone says "keep faith", "stay strong" and "think positive" but the chances of your child getting cancer is slim, and here we are talking about the dreaded "C" word about MY CHILD. So there is no guarantee that she will go either way all I can do is pray. I will however focus my energy once we get into the remission phase on having the best possible summer we can, knowing that it is out of our hands, that we just have to enjoy all the time we are given. Trust me, this family is going to have 1 HECK OF A SUMMER! Mallory is totally going to be rocking a 2 piece bikini, growing in some ADORABLE baby hair finally, and she will be finally able to go into WATER!

There are things I think everyone takes for granted when having a healthy child. There is a reason you NEVER see cute adorable bald kids running around, majority of them have severely compromised immune systems and cannot be in public places where the tiniest bug can cause an infection. Infections can be fatal. With a child with a broviac (the tube that is coming out of Mally's chest) they cannot have a normal bath, so in 4.5 months we have given her nothing but sponge baths and quick wipe downs. So if she smells bad blame it on the broviac. I have not been able to give both girls a bath together EVER, this is something I am SO looking forward to. We have spent more time in the hospital than at home since she was born. She has not slept through the night EVER, not even close. A good night for Mally is waking up 3 times (although I will TAKE it since for awhile there I was getting up 7-8 times a night). Jillian has been put to the sideline, what I deem one of the cutest, funniest years ever, I have missed so much of. It breaks my heart, I know that she is well taken care of by my parents when we are not there so at least it's a little less of a struggle. Jillian is constantly shuffled from place to place so there is no "normal" for her. I am too tired to do the dishes, laundry, or to even make food. So she has not had the healthiest living arrangements, I try my best but it's hard to see everything in ruins around my house, to not have fresh food (it goes bad half the time I TRY to buy it and to be quiet frank I just do not have the ambition to go to the grocery store every day I need something). So we have been living off of oatmeal, nutragrain bar's and yogurt smoothies with goldfish crackers and cheeze - it's for snacks. Could be worse I suppose? If Jill grows up hating these things, I won't blame her but for now it works.

I am ready for our life to go back to normal, although we will have clinic visits every month and scans every 3 months it will not be as hectic as being in the hospital for a week at a time, the numerous ER trips, and being able to leave our house whenever we want!

I am absolutely ecstatic that we were able to stay home this weekend, I have even managed to get Mallory out of the rock n' play and into her crib finally! Hopefully in the next 6 weeks things will start falling into place again.

LOVE YOU ALL! Toodles! :-)

Top Picture is Malibu and the bottom one is Jillian at the same age.
We sure do have some CUTE babies :-)

Pictures, Pictures & More Pictures

Chemo Round #4

Sissy - "JUMP A JUMP"

OUTSIDE FUN FOR ONCE!

Mallory decided my shirt would be the perfect place to vomit all over so Mommy got to wear an awesome scrub top till we got admitted!

Round 5 complete! :-) There were a lot of smiles, less puking, and a lot of fun!
We recieved good news that the cancer IS SHRINKING! It made this round more tolerable and less stressful!

My girls <3 each other hahahaha!)

23 days.

That's how many days we've spent in the hospital this month, a day off here and there. All I wanted was for this day to get here so we could go home and Mal's numbers tanked already. So hello blood transfusion #8. Hello 4 o'clock discharge.

Should be greatful that we're going home today but I'm doing it grudgingly and mumbling swear words under my breath at stupid cancer once again for foiling my plans for the day.

I lost my cell phone once again (I've never mentioned how much I rock at doing that.)

My moms at my house cleaning, soon momma soon we will be through this and I can go back to doing laundry, dishes and possibly even a little landscaping. I can't guarantee I wont mutter some swear words through those chores though but ill be happy to do them because it means my life will be a little less crazy if I have time to even think about a dish to clean.

Anyhow well ok I am done with my whining for the morning, April's just going to be a better month for us.

*sticks out tongue at Neuroblastoma, effff yewwww*

Cancer

Cancer, ugggh cancer.

The day Mallory was diagnosed I began to slowly write her funeral. What songs, what flowers, her tiny casket, how we would take the letters off her wall and wipe away the sweet nursery we made for her.

I have played this image over and over and over again.

When people would tell me to stay positive, to pray, to have a little faith the only thing I could think was 1 in 5 kids die when they are diagnosed with Cancer. Its the ugly ugly statistic.

I am feeling very blessed that Mal's CT came back amazing, that hopefully she'll be done soon. We still have years of scans, urine checks and blood draws after this. She has a 15% chance of relapse, there is "no evidence of disease" for her since they are leaving a tumor in her, once the chemo is done we're not still.

I have met SOOO many amazing families. All I can say is that there not done so neither are we. So we will continue to fight not only for neuroblastoma, but for luekemia, sarcomas, and all other childhood cancers.

Kaydance, Blair, Lola, Benjamin, Alyssa, Oliver, Asia, Gwen, Ike, Taryn, Issac, Aidan, Adam, Willem, Alayna, Gabby and many many more.

I will be one of those annoying people that never stops advocating for a cause. Even after Mallory is done with floor 9 and 10 there are many kids that are starting there fight and who have years and years of treatment left.

I am Sweet Baby Mallory's mom, the purple power ranger, the social butterfly, a good wife, a GREAT mother, a childhood cancer advocate, and just your average person. I've found a little light and I'm going to let it burn bright.

Happy 6 Month Birthday Malibu

6 months ago we help this perfect sweet baby girl in our arms for the first time. 2 months later our lives were shattered, and for 4 months Mallory has fought like HELL. We have had some pretty tough days and we still will in the next coming months but this little girl was worth everyone of those.

Today we CELEBRATE!

Mal has had:

2 open abdominal surgeries
3 broviac placements
4 rounds of chemo (about to start her 5th)
6 different chemo drugs
5 emergency room trips
29 dressing changes
1 bone marrow biopsy
3 CT scans
1 MIBG scan
7 blood transfusions
2 platelet transfusions
She lost all of her hair
She has been on 5-8 medications daily for 4 months now
She has had her blood drawn over 20 different times.
She has had numerous IV'S
She's had her blood pressure, pulse, and tempature every 4 hours or more when we're in the hospital.
We have spent 2 months in the hospital over the last 4 months.

But above all, through all of this, she SMILED every single day she endured all of this.

I know we still have to fight to get her into remission, but she is a teeny tiny little FIGHTER and I know she can do it. I am praying everyday that we continue in the right direction that she will live to be 100 someday.  But for now we CELEBRATE 6 months, 6 months of having one of the bravest, most incredible kids I know.

We love you MISS MALLORY! HAPPY HAPPY HAPPY 6 MONTHS PEANUT!

The sun is shining today!

The Bad News First

Mallory has to have surgery today to replace her broviac once again. When we left the hospital on Tuesday I had noticed a smudge of blood on her onesie and today the same thing. The NEW line was leaking as well, uggghhh. So at three she will have another surgery, at least its under sedation and a generally easy procedure. More antibiotics and we delay chemo a day.

The GOOD NEWS (or actually the GREAT NEWS)

We were able to discuss Mal's CT results with Dr. Axtell today. Mallory response to these past 2 chemo rounds were INCREDIBLE! Along with amazing catacholomine numbers.

Her numbers are within the normal range and the tumor has shrunk a significant amount, so well that he is only anticipating she will have to do 2 more rounds (so this one and the next one in 3 weeks). That's 6 WEEKS LEFT!

We are over the moon with these results and the SUN IS SHINING BRIGHT AS BRIGHT AS IT CAN BE!

If everything stays on course we will be looking at another MIBG, CT, and ultrasound of the liver after these 2 rounds with Lord Willing the best possible results.

Having our daughter kick cancers butt, see results (better than we thought!), and to know all that she has endured and suffered through is working just makes us fall down on our knees and PRAISE THE LORD! We will continue to pray every day for healing, to give us strength and guidance and to put our loves in God's hands, he is the only one that knows the plans for our family.

So we ask everyone to pray, send positive energy and cheer our little girl on for the rest of this fight. Its been a long 4 months but our baby has been worth EVERY SINGLE tear, breakdown, argument, smile, laugh and snuggle.

MALLORY ALEDA YOU AMAZE AND INSPIRE US!

Goodbye Hair

I have been contemplating cutting my hair off for a LONG time now, I was waiting for our wedding and was going to do it right after that (but with postponing it it will give me another year to grow it out anyways!) but finally TODAY I decided that I am GOING TO DO IT! So Goodbye Hair, Hello New short Easier Hair!

My hair is long enough to donate it to Locks of Love as well! So to be able to help out a kid with Cancer is an even bigger reason for me. Although Mallory would not benefit from a wig, I have met MANY MANY kids that would. So It feels GREAT!

Plus it will be easier in the hospital to have short hair, quicker to wash, dry, and have it look good for once. Not to mention it'll bring down the price of shampoo for me! :-p

Mallory's CT was AMAZING! The tumor has shrunk 1/4 of the original size, and her chatacolohmines (sp? seriously some of the medical terms are SO hard to spell correctly!) are NORMAL, Beyond AMAZING news. We get admitted for Chemo tomorrow and will actually be able to discuss everything with Dr. Axtell then, but for today we are going to enjoy some more sunshine and possibly some ice cream to celebrate.

Ohhh yeah and on Friday we will be celebrating Mallory's 1/2 BIRTHDAY! WOW My little chickadee is going to be 6 months old! What a ROCK STAR!!! :-)

Annoyed

We were discharged this morning without talking to a doctor, he came in saw we were sleeping and didn't bother to wake me up. Yesterday I was in the shower and he never came back.

I was hoping that instead of leaving we could start chemo early but of course no answers on that because all we did was talk to the discharge coordinator instead of our primary doctor. She said because her line broke we needed to wait which is BS since they ran fluids for 2 days straight, then she said she talked to Axtell our primary and they had to come up with a chemo game plan.  Which i also think is bs and why couldnt i directly talk to him instead of secondary crap. They better not switch her chemo if its working, I'm also going to question why we are not looking into a stem cell transplant (its never been discussed before). I want the best of the best for her and what to know all of our options. If it will increase her rate of survival then why not.

Arrrggg ohhh well sitting and enjoying the sunshine for now I suppose.

Good news

MALLORY'S TUMOR AND LIVER LESIONS ARE SHRINKING! Praise the lord!

We may even start chemo early!

It WORKS

Broviac works! Wooohooooo!

And CT was bumped up to today! Please pray for MALLORY!

Revolving Door

Two days home; I think that's a new record. We're back in the hospital for yet another unscheduled visit.

This morning I hear Ashley shout out "Ryyyyaaaaaannnn! Mallory's broviac is leaking!"

Ugh. The Broviac tube is the tiny silicone tubing that goes into Mallory's chest, and taps into her aorta. It is used to supply drugs, and to draw blood back out. It has two safety mechanisms to avoid leaks or contamination: a mechanical clamp that pinches the line shut, and a spring-loaded valve cap on the end of the line. Those safety mechanisms are are fine and dandy, unless the line breaks further up the line.

Ashley was performing the morning drug ritual on Mallory, and one of those steps includes connecting a syringe to each of the end caps of Mallory's broviac tube, and pushing in "VCH" (Vanco/Cipro/Heparin, for those of you who are keeping track... two antibiotics and an anti-clotting agent).

This morning when Ashley started pushing in the VCH, she said the tube started spraying everywhere; it had sprung a leak.

We both instantly sprang into action, knowing exactly what to do without even having to discuss it. Ashley got on the phone and called the hospital, I started examining the tube to stop the leakage before we could get to the hospital. I folded the line over above the split, and crimped it off using a zip-tie out of my garage. Ashley jumped in the shower, and I got Mallory ready to go.  Off they went, and I made arrangements for Jillian. I had to meet up with Ashley and Mallory later at the hospital.

The hospital is highly vigilant of a bacterial infection for Mallory. This is why when Mallory runs a fever we end up spending 4-6 days in the hospital. Same with a broken line; they are so careful to avoid an infection that they immediately start dosing her with antibiotics when she walks in... just in case. They draw blood and have the lab culture the blood over a period of days to see if any bacteria will grow. If bacteria grows on the cultures, they know she had a bacterial infection, and they keep dosing her accordingly.

After commenting on my zip-tie ingenuity (*pats self on back*), the doctor cut the line clean off and spliced in a   temporary patch. Now we have to wait 24 hours before they can test the patch to see if it left us with a viable broviac line or not.  If it is not viable, Mallory will be going in for surgery #3 to remove and replace her broviac line.

The girls are sleeping soundly now. Good night, all!

-Ryan

In a perfect world

everyone would have love :-)

I am feeling incredibly blessed tonight.

For one my punky is HOME again! Her numbers SHOT up over night and she has been surrounded by so much love from people near and far through this whole journey. 

Our CT is on Wednesday we will have the results by next week Thursday, I am on my hands and knee's praying for some good news, even if its just a little, I just need to know that we are going in the right direct.

Dear Lord, I am giving you my burdens, my daughter's health, and every plan you have for our family and laying them at your feet. Let it be your will to work miracles in our lives, to give us strength and healing.

I believe my mental breakdown had to happen, it had to. Not only to analyze our lives, but our situation, our relationship. It taught me most importantly take the help I am offered. I am a stubborn, stubborn person and it's to the point where I NEED people to tell me it's time to step back. Let someone else take a turn, have faith in others when I have no faith left, when I have nothing left to give, that it's ok. It's ok to ask for help, it's ok to be weak, it's ok to walk away for a little bit.

My daughters will benefit from a more stable mother, and so will my family and Ryan. I know all 3 of them will understand why Mommy takes a break, why Mommy needs time for herself.

I have decided to seek help. Being able to lay the weight of my shoulders on an empty ear sounds like the right move. Tomorrow I am on a search for a good therapist, I will have to make time for this. I was going to wait till after Mallory was better because my life is hectic as it is but this will ONLY make me grow as a person, it will only help me cope, it will only help me heal. To save my relationship with Ryan, Our families and my friends this is the best choice for myself. I am on a low dose antidepressant and recently added an anti-anxiety med to help, so hopefully in combination with both I can become a solid solid wall.

I feel like Ryan and I are 10 steps ahead again, we talked, sorted through the madness and came up with a game plan to make this less stressful on both of us. To make it easier on the girls too! So proud of us, we had a civil conversation with no fighting, no screaming, and no bickering. Just honest real answers. It was PERFECT, just what we needed! The number one thing we are going to work on in our home and with our children is first and foremost Encouragement and Praise. I don't think we do enough of this but I want my girls to know when they are doing a really great job, I want to hear when I am doing a great job, and I want Ryan to know he's doing a great job! We have decided that there is a "pause" button (How I met your Mother idea) for when we need to have a "Parent Time OUT" so we can sit for 5 minutes, gather ourselves, and become more rational, realistic people. There were many many things discussed but this are some of the BIG issues (that might not seem bit to some people but to us they are HUGE!) Our hospital stays will be divided up as well, we will come up with a game plan for each week and go from there. 

Safe And Sound

Dear Sweet Mallory,

We are all fighting with you girl. We held you in our arms almost 6 months ago and we knew you were the missing peice to our family. You are something special little one. Someday we are all going to look back on this and just recall bits and peices of this craziness. Dear Little Girl you have to fight, and FIGHT HARD so that we can see that bright smiling face every single day. S o that we can comfort you when you cry, kiss your booboo's when you fall, and have you to cuddle up to everyday for the rest of our lives. So baby please know that we love you, If I could change places with you know that i would in a heartbeat, You have done nothing but smile and troop along through everything and I just want to tell you that WE love you so much and we are SO SO PROUD of you!

- Mom & Dad

Dear Jillpie,

You have been the light of our lives since you were born. You have taught us so much more than we could have ever anticipated. Having you in our lives makes in complete. You are incredibly brilliant 2 year old with a heart of gold. I wish I could spend every day with you, holding you, laughing with you, and singing our "ABC'S" all day long. You make this easier on us because of your strong strong independance. We love you so much and enjoy every single moment we have with you. You just amaze us everyday. We are PROUD of you too! You were thrown into a completely different world since sissy has been sick but someday sweety it will get better.

-Mom & Dad

Dear Ryan,

I am not sure how to communicate the love I have for you. It is unconditional. I am sorry that things are not going the way either of us planned for but you have stood by thick and thin. I believe you have different coping mechanisims than I do but I need you to share too. I need to know how you feel and what you feel too. I will never let this go, I am in it for the long run, we will FIGHT not only for our little girls but for ourselves as well. Because once you stop fighting you get defeated and theres no turning back. We have a brilliant 2 year old and an amazingly stubborn 5.5 month old who is so sick, sicker than we have neglected to accept. She needs us, so does Jillian, and so do I, I need you too. I love you, I am not turning my back on you, I am not giving up, I will never give up what we have, it's too special. People envy our love, so no I refuse to throw it away because of this. I love you big lug, and I want to spend the rest of my life with you. Grow old, grow tired, and grow deeper in love.

-Ashley


I remember tears streaming down your face
When I said, I'll never let you go
When all those shadows almost killed your light
I remember you said, Don't leave me here alone
But all that's dead and gone and passed tonight

Just close your eyes
The sun is going down
You'll be alright
No one can hurt you now
Come morning light
You and I'll be safe and sound

Don't you dare look out your window darling
Everything's on fire
The war outside our door keeps raging on
Hold onto this lullaby
Even when the music's gone
Gone

Just close your eyes
The sun is going down
You'll be alright
No one can hurt you now
Come morning light
You and I'll be safe and sound

Just close your eyes
You'll be alright
Come morning light,
You and I'll be safe and sound

I fall down on my knees

I am no longer able to care for my child because I have neglected to care for myself.

I have spent so many nights awake with her, even when she is sleeping I can't take my eyes off of her. I just don't want to miss one moment and that has caused me to have a full mental breakdown. I am not deserting her, I never will but I have spent the last 4 months caring for her every need, waking up with her, giving her shots, medications, comforting her when she is miserable. Now it's to the point where I know that I need someone to help me out (most likely counsling).

You haven't walked in my shoes most likely, and even the people that surrond me haven't. They support me, give me encouragment but I am bogged down.

I finally hit that BIG mental breakdown. The one where the next person that says one snide comment to me is going to get it, I WILL lay into you.

Can you honestly think that we should even begin our marriage as bitter and angry? No, I want to walk into marriage as a whole unit, not a resentful miserable person. This is one of the big reasons why I am canceling it. Ryan and I are not getting along, we haven't for a few months now. I open and honest about this because I REFUSE to sweeten up the facts. No amount of date nights can fix our situation right now. I will Marry him someday because I love him, he has stuck by us and supports us. We will in time mend what has been taken from us because of Cancer. I know I am too hard on him, I yell too much, I lose my cool too often, but I feel like I have spent so much time doing this alone. This may or may not be the truth but I have been handed over a lot and I am resentful because he gets to go to work, he gets to live a normal like part of the time, he can go in the basement and play video games, he has an escape, I don't. Here I am stuck in a hospital room or with a crying baby on me all day long at home. I am sure he wishes the tables were turned and he could spend more time with Mallory. I know he is doing a good job, he is a GREAT dad, he is still my best friend, I still love him so much. I am sure with some time we will get back to the world that we used to have.

I had pictured my life so much differently.

I am tired, flat out tired, I am doing my best, but best isn't good enough. I have to get better, I have had a hard time handing over my child for someone else to care for because I am her Mom, and I should know best and right now there is no "normal", there is nothing I can do to comfort her outside of morphine and benadryl.

So please your negativity isn't welcome. My child has cancer and she has been my main focus for months and If you see me as weak for walking away for a little bit then to hell with you too.

Re-admitted

Mally spiked a fever, so we ended up at clinic at 8am. That led to blood cultures, CBC, and antibiotics. Poor girl was super dehydrated on top of her counts "sucking" as the doctor said.

She's had blood pooling in her nose (I had figured her platelets were low), her count was 20,000 normally its 200,000+.

Her white count is 50! (NOT GOOD!) She has 0 ANC too.

She had her first platelet transfusion. We had a good 5 days at home while we were there. Hopefully she will bounce back quickly but that's not looking likely with those numbers.

We are also canceling the wedding, a decision I have thought long and hard about but its honestly causing too much stress. We just need to take care of our girls and focus all of our energy on them right now. I just feel this is very important to remain emotionally stable and strong. We will not be doing a courthouse wedding because it is very important to both of us to have a religious meaningful ceremony, I am also sure that I want us to write our own vows as well.

So whatever, just another bump. We just need our daughter to be healthy so she can fully enjoy our wedding as Well. We are a family with lots of love regardless of a wedding or not. Ryan is my best friend, an amazing father so we are already in it for the long run so cancer you can $#%& off.

My favorite part of the day

is NAP TIME!

We've almost made it! (It's 1 pm and Jillian usually goes to bed around 1-2ish, the zoning out has started so I know we're getting there!)


Mallory has her CT scheduled for March 21st and Chemo starting again on March 22nd. We should have the results back by clinic on the 22nd. I just pray that we get some good results. This chemo is super hard on her and she struggles everyday with feeling good. I am dreaming of the day she is NED (No evidence of Disease).


I am struggling with the "what if's" again. I know whatever happens, happens. But I can't even begin to imagine, nor do I want to go through life without her. I don't want to take the letter's off her wall, or pack away any of her stuff, I just could NOT do it. So I am hoping and praying we get more good news with this CT, that it shows this cancer is finally responding to treatment, she has been through more in her tiny life than any person should ever have to go through. I pray for her everyday, that she just will continue to thrive through this and grow up to be a naughty 2 year old just like her sister.


We will hopefully be home for Easter, this is another holiday that will be spent on house arrest. I am going to make it SUPER special, we are going to make cupcakes, hot subs, an egg hunt, and just vedge at home. I have to go shopping for the girls so they have an Easter "outfit" as well. We are going to spend the day celebrating Jesus and all the things in life that we have to be thankful for because of his sacrifices. Even though we will not be going to church, or spending it with our relatives, it will be a great day. A day we get to rejoice and spend together and to praise God.

We made it home today!

There is nothing like walking into your house and smelling freshly baked cupcakes (Ok so I totally cheat and have my Scentsy going! Not actual cupcakes lol!).

We made it home, Mallory is doing well. I would have opted to stay another night because she is still pretty cranky. But I talked to the physicians assistant this morning and he ok'd some at home Benadryl. We also discussed that she should be eating around 20 ounces of formula a day and that if she wasn't doing good with that to call clinic in the morning and we would push fluids tomorrow. So I am feeling confident in our choice to come home! (Even if we have to drive back for a few fluids tomorrow but so far she has drank 14 ounces so that's ONLY 6 more to go tonight so I think she'll make it!)

Mallory and I took a nap on the couch, she was a little cranky but nothing a little extra sleep didn't help. So we snuggled up, I smell like baby spit up from her drooling over me. Pretty sure my chick-a-dee is teething.

Ryan took Jillian for a "Daddy Daughter Date" and he refused to divulge where and what they did. It was strictly confidential between them, hahahaha! Seriously LOVE that guy! and HOW FUN for Jillian to get out with her Daddy. Feeling super blessed to have such an AMAZING guy in our lives!

I had a LOT of panic about our wedding this weekend. Mallory's chemo if it stays on track will be the weekend of our Wedding (July 7th). But talked to the Doctors and they are pretty sure we can work around it because she will have been in treatment for so long. So hopefully it all pan's out, plus she won't be super neutropenic (her body will have recovered by then) from chemo still so it should work out better this way. So thankful they can work with us! I can't wait for July 7th, I have had no time to plan, no time to make ANYTHING for the wedding, but ohh well If it's just me in my fancy smancy dress and ryan all dressed up along with the girls then so be it. It will be PERFECT! :-)

We also got a nice big envelope in the mail today with insurance statements from last year and this year, a nice 40 pages worth of statements I would guess. We already hit our entire deductible and capped out the out of pocket expense already this year but luckily Mal's 2nd insurance covered most of that. I need to get her a shirt that says "Million Dollar Baby".

We also received a box of goodies from an AMAZING family in texas. Mallory got TONS of organic baby food, HOW AWESOME! And in little pouches with spoons that at attach, I've never seen anything as cool as those. We will be treating her to some yummy organic baby food ASAP! Plus Mallory got a BEAUTIFUL silk baby blanket today. Big Sister Jillian got a few doll's that I am sure she will snuggle up with tonight. And a few gift cards. I am just so touched by these warm gestures from everyone, our family cannot thank you enough for making the transition to so much time away from home that much easier. I am just amazed and speechless. WE LOVE YOU ALL!!!

I am going out with 2 of my favorite ladies tonight! Woot Woot for Girl's Night :-) This Mom needs a break and little wine to get back in the swing of things at home.

I see hope in a little girl

This chemo started off GREAT! Mallory has been a trooper minus some more throwing up than usual but I can't complain to bad for all that she has to endure she just keeps on shining through.

As of today there were a few complications, her hemoglobin hit 7.3 the lowest it has ever been. She developed Tachycardia (an irregular heartbeat) because of the hemoglobin being this low. She had a blood transfusion today hoping that will straighten that out. This is her 6th one since she was diagnosed and the largest amount she has ever received.

She has been extremely restless, she just cannot calm down. She just moves, and her lip quivers and her smile just is barely there. She was finally able to get a little bit of rest early this afternoon and a nice walk around the circle.

We had 2 young children (1 for 2 nights and the other for 1) in the room next to us that you could hear straight through the wall making it very difficult to sleep for 3 nights straight and then last night Mallory could not calm down so needless to say this Mom is EXHAUSTED!

Mallory is just not herself, her blood counts are already super low and we still have chemo tonight. :-( Poor Sweet Pudding.

I have met SOOOO many amazing wonderful incredible people this week. What a blessing to have such hopeful, inspiring people to look to for support and guidance. I pray for their little children too as we are all on this road together. So we love you ALL SO MUCH! You have touched our hearts in every way possible.

My parents are just SPECTACULAR, they went and got Jillian a new twin bed for there house (THANKS NANCY!) and new bedding that she just LOVES. How special is that her own big girl bed for when she stays the night! "Tinkle tinkle lil staaa, how wonner what are? Up abooo ta world so sky. Tinkle tinkle lil staaa" - Jillian is sooooo sweet. She started singing to us ALL the time. She also prays with us now and we say "God Bless Mommy, Daddy, Mallory, Jillian" and She always chimes in "Nana, Nana, Nana, AMEN". This brings a huge smile to my face.

Catecholamines (I spelled this HORRIBLY wrong on the last blog!) are excreted through the urine. They tell us her adrenal hormones that are typically high in neuroblastoma, we want these numbers as low as possible. When she was first diagnosed they were in the high 200's, came down to 140 after the first tumor was removed and back up to 170 and now with just 1 round of chemo they are at around 60. They are divided into 2 number VMA and HVA and both numbers have dropped significantly. This is a good indication that the chemo is doing it's job although nothing will tell us more than her next CT we can only continue to pray that this is the right course of treatment she is on. Although it makes her very ill we know we are doing everything that we possibly can so that our daughter can continue to live her life, so that she may have many days on this earth. I leave this weight on God's shoulders to get us through this no matter the outcome but pray each and everyday for healing, for strength and guidance.
I updated Take them a Meal
If you have to search use "Wiersma" as the last name and the password is "love".
We are looking for people that can bring hot foods up to the hospital and lots and lots diet cokes lol.

We are not just asking for you to bring me food and leave but I sit there majority of the day doing nothing but rocking mally, sleeping, it gets pretty boring. So some company would be great as well.

Cycle 2

So far so good. Mal is doing great!

We got great news catacholomines are 60! They were in the high 200's when she was first diagnosed. So it will be interesting to see what her CT shows. Ill make Ry write a blog with all the technical information later today to better explain, I'm on my nook so it would take a day and a half to write plus a lot of cuss words so we will just designate the task to him.

I want things to be "normal" again

I really want to enjoy Mallory being a baby, but is it just bad of me to wish this year away already? She has at least 6 more rounds of chemo after this week left. That's just months and months of cancer crap that we have to deal with and not even knowing if it's going to work or not or if it will be extended...

A day in the life of me starts by waking up, drawing up 5 different medications to "try" to get her to take. Sometimes resulting in a vomit or two and I get to start the whole process over again.

Drawing up heparin, flushing her lines.

Getting Jillian breakfast, changing both girls diapers which lately has been a whole ton of blow outs in the morning so we usually end up with a morning bath.

By the time this is all done its 10-11ish.

Drawing up 1 more medication around 12. Changing both girls diapers.

Then its nap time, which sometimes happens and sometimes doesn't. It's hard to get a schedule for either girl when life is so hectic right now.

Changing more diapers. (It's inevitable when 1 girl poops the other does too!)

Attempting to get around to doing some type of housework which usually doesn't work. Then trying to plan dinner, but who has time for dinner when you barely have time to go to the grocery store and everything goes bad before you can use it. So we are a preservative only diet right now (healthy, right?!).

Jillian almost ALWAYS gets a bath after dinner because the girl just can't help but make a mess.

Get Jillian tucked into bed with a book, prayers and lots and lots of kisses.

Every 4 days we change Mal's dressing over her broviac which is turning into quiet the fight with her rolling around, tugging on her lines, and just being a baby in general. Remove old dressing, apply 3 beta dyne swabs, wait for it to dry 3-5 minutes, then apply new gauze and tagederm all while wearing masks and trying to keep her busy and as sterile as possible.

Every week we have to change end caps, which is SUPER quick and easy but still tedious and we have to be as sterile as possible.

Draw up 2 more medications. Put a some numbing meds on Mal's leg.

An hour later give Mally her Neupogen shot.

Ohhh wait then throw in an appointment or two multiple times a week. Not to mention she's going to start crawling, teething, and possibly walking during all of this. Taking care of Jillian's basic needs.

I can't make my own baby food because it would be just a pain to try to transport it back and forth. Then there's the fact that I am afraid that I wouldn't make it sterile enough. I LOVED making baby food for Jillian, it was seriously one of my FAVORITE things to do. Call me crazy but I just enjoyed so much of it.

Then throw in the fact that Mallory is a HORRIBLE eater and sleeper. I totally can't blame her. She just has NO way of getting on a good routine, during chemo we wake her up every 2 hours for diaper changes, she will NOT let you hold her for most feedings. Most of this started after the initial tumor resection, and has gotten worse since her last surgery. She wants to lay flat and not be bothered. So here I am propping bottles, letting her sleep with me, and creating such bad habits because I have NO choice. A mom can only watch her child suffer so much before desperation kicks in. So yes my child will most likely have a bottle till she's 5, she will most likely sleep with me till she's ready to go into her own room. I have no guilt, this is not the road I would choose had I been given a choice.

I am complaining, flat out complaining. I should be able to look forward to her rolling over, but when you go to the bathroom and come out and your child has IV lines wrapped around her head that equals not much fun. Ummm crawling on those nasty hospital floors with a cord coming out of her chest, I am terrified once she starts she's going to rip it out of her chest. Teething, talk about having a meltdown over so many fevers she's going to run just because of them!

Throw in poor Jillian on top of all of this, her life revolves around Cancer too. We have to drop her off at the drop of a hat if Mallory gets sick, she has to stay away from us weeks at a time. She doesn't understand any of this, she just turned 2, she shouldn't have to go through this EITHER!

I just wish I could look forward to all these things. I do look forward to her getting older because I just know with each month she gets is another month we get to spend with her, it's just trying, emotionally draining, and exhausting.

I love Mallory so much, wouldn't trade her for the world. I am not complaining about having her, because she is great, spectacular, resilient and much stronger than I could ever be. I just wish we could go back to normal life, life before cancer. I just liked it so much better.

Success

This weekend has been AMAZING!

We had around 60 people show up for the blood drive only around 50ish could donate but what a GREAT turnout, that's 150 people that can be helped by such a small effortless act. WAY TO GO EVERYONE! (even if you were not able to donate we still appreciate you coming and showing your support!)

Mallory has been fantastic since we got home on Thursday. She's chipper as ever, eating great, and smiling like a champ. She is on a new medication called "Megace" it has done WONDERS. The oncologist on the inpatient flood this past week that she is no longer gaining and hasn't for the past month almost. Our next option is a feeding tube after this. So far so good, she is drinking 32 ounces or more a day! Which is WAY more than she normally does or more than any baby really, now if we could get her past 4 ounce bottles that would be great, but I'm not complaining I'll take the constant feedings over a feeding tube!

We have a busy week coming up, Mallory has clinic on Monday to check her counts. Also I am pretty sure we are going to have to degunk her lines because they keep getting pretty hard to flush. They still flush thankfully but we don't want anymore problems with those lines, Mal has had enough surgeries and scars, the poor punky does not need anymore.

I have a MOUNTAIN of laundry that at some point needs to be folded and put away, thankfully my wonderful Mom is going to help me out with that. (and possibly Kari too if we don't get around to it all!). I have always been bad about folding laundry but now I HAVE TO or else I spend more time digging around to pack bags than if I just folded it in the first place.

My parents also cleaned and vacuumed my house while we were at the blood drive, how awesome are they? I only have a week at home, no motivation, and 0 energy left lately. It's great to know that I can count on them to help out when I get so run down after awhile.

We also have Jillian's follow up eye appointment from her surgery. She in the past has been SO SO naughty when it comes to these. She screams, and kicks, and gets so mad. Hopefully the 6 month break from them will make it a lot easier. She had a lazy eye as a baby, she had glasses, and an eye patch. Her eyes now look spot on so hopefully the ophthalmologist will feel the same way! I am sure this is going to end up being a 3-4 hour appointment but ohhh well.

We have chemo again on Thursday, that runs for 6 days. If anyone wants to come visit and bring lunch during the week this Momma would think the world of you. Friday - Tuesday are GREAT days for visitors. The last round of chemo went without a hitch, Mallory did GREAT so we are hoping it's the same.

Then 2 weeks from that we do another CT! I have no idea what I am going to do if it doesn't come out with good results, I am not going to touch on this right now because my focus is getting us through this next round. I've got my fingers crossed, chin held high, and praying all the time.

-Ashley

Mallory's 1st big step to CANCER AWARENESS!

Blood Drive is FINALLY tomorrow.
We are PUMPED!

Mallory received her 5th blood transfusion this last hospital stay. These improve her quality of life, they give her the spunk back in her smile, and she just feels 100% better. I know that these do SO much for her, I pretty much can tell you whenever she needs one because she gets pale, splotchy, and lethargic.

If you are able, if you can, please help make this drive a HUGE success!

Go HERE! To sign up!

Or show up at the

Walmart
4542 Kenowa Ave SW
Grandville, MI 49418

HOME

We made it home today! Mallory is doing FANTASTIC! I will do a longer entry tomorrow on some of the other details. I am going to attempt to let her sleep in her own bed tonight, this whole week at the hospital she has slept with me in the rocking chair and personally I want to lay in my bed arms stretched out wide by myself :-) Love my noodlebugs but sometimes I just need some "me" time. I could never 100% cosleep even though I feel we are doing tons and tons of that lately (and for good reason of course). I just like my bed to much to share it. :-p

Positively positive

Mallory's c-dif test came back negative woohoo!
Her ANC is 23 (needs to be 200 to go home) but its above 0 finally!
Mal is eating like a rock star!
I got to leave for a few hours and spend time with Jillian and have a nice quiet dinner with Ryan.
We're back at the hospital and I've got a more level head, I just needed some time away.

The little boy that has been waiting on a liver is receiving it RIGHT NOW! please say some prayers and to the family that lost there child and have the strength to save this boys life. And prayers that the surgery is a success! This little Guy has been inpatient everytime we have and has touched our lives.

This being said everyone that has fought, survived, passed away is part of this oncology family. We are here to support, not judge, and to have an understanding for each others situations. No 2 cancers are alike, each patient is an individual, has there own story, has there own battle and we only should uplift and.encourage them.

This extends to everyone as well. Someone will always have it worse, have it harder than you, but you are still entitled to your own story. Life is not a competition. We do not tell our story so that you will think we have it worse than you. To be completely honest we tell our story to bring awareness, share our hope, and spread our love.

We will share our ups and downs but not so you feel sorry for us but so we can be Mallory's voice. So in 10 years we can show our daughter what she overcame, what she fought, and how it made her the person she is.

We have a lot of faith she's gonna pull through this. But we have a long tough road until we are even close to any finish line.

IGG

Mallory is currently receiving Immunoglobulin G IV medication. She has not been able to be vaccinated since she was diagnosed so her little body cannot fight off anything currently. They will continue these medications once a month through Chemo, she will not be able to be fully immunized until 6 months after treatment ends. So until then we will be monthly IV's to help her immune system out. Hopefully this will prevent some future hospital stays.

She is doing MUCH MUCH better today. Smiley, happy, and all around in a GREAT mood. We are still unfortunately stuck here until her ANC bumps up to at least 200, currently it is at 0! :-( Yuck. We do daily neupogen shots that help boost her bone marrow production, so hopefully we will see an increase soon. I know her and I would benefit for a few days at home before we come back next week for Chemo.

They started Mal on a new medication today to give her more of an appetite. She hasn't gained any weight since her last round of chemo so we are trying this to prevent her from having a feeding tube. So I hope it works! So far today she's done much much better! It will take a few days to completely bump her up but I've got my fingers crossed. Mal has NEVER been a good eater but then again she's always had cancer and who knows if its the cancer that effects her or if its just the way she always would be. But I've got my fingers crossed that she does much better on these meds!

I went and saw Jillian yesterday, I walked into my parents house and she says "WOW!" hops off the couch and jumps in my lap. Such a good feeling when your kid misses you so much. I have to spend so much time away from her, it just seems so unfair. One of the things that bugs me the most is that we decided that I would be a stay at home Mom shortly after Jillian was born so that she could get the most out of her childhood by having me around and here we are not seeing my kid for 2 weeks or more a month. It just sucks. Cancer sucks.


I miss being home. I miss running around with Jillian. I miss seeing Mally sleep soundly in her crib. I miss spending time as a family. I miss life before Cancer.

Blood Cultures

So far so good, they are negative but they continue to watch them for another 24 hours.

Mal had a rough night and morning, we ended up giving her morphine to calm her down. They are not sure what is causing her to be so fussy, some people develop gastrointestinal sores from there mouth to there bottom and they can be pretty miserable so it could be that, we are playing a guessing game right now.

She has developed a splotchy rash all over which points to a viral infection which is much better than a bacterial infection.

Her fever spiked up this morning but has tapered off again. Hopefully it stays that way this time.

Fever

Mallory started feeling crummy last night around 8ish, I kept a close eye on her temperature all night. We have a forehead thermometer it typically reads 97.6 when she is feeling good and it slowly started climbing. She reached 99.4 during the night and stayed there, we kept her in bed with us, she refused to eat, and by morning she lost all of her color and could barely hold her head up.

So a quick phone call to the hospital to let them know we were on our way and we rushed out the door as soon as my Dad picked up Jillian.

When we got here they did her blood pressure, temperature, and pulse ox monitor. Her blood pressure was good, her temperature was 100, and her pulse was pretty high. They drew blood from both her lines and sent them off to do a culture to see if she has any bacterial infections. They also did a CBC and her numbers are super low, her hemoglobin is an 8.1 and her ANC (ability to fight infection) is at a 0. Her white blood count is super low as well, as to be expected after chemo.

Her temperature spiked to 102 within an hour and they started her on antibiotics, tylenol, and lots of fluids. We were admitted shortly after this.

The blood cultures take 12-24 hours to get back so in the mean time she gets antibiotics while we wait.

We will be here for at least 2 days or if the culture comes back positive 5 days or until her fever breaks.

She is also getting another blood transfusion to hopefully perk her up. She is sooooo pale, she has petecia really bad because she is so anemic, and she has slept pretty much all day. Her fever is at 99.9 the last time they checked.

I am really bummed about this because she was doing so AWESOME! if the cultures come back negative it could be caused by her ANC being at 0. They consider this severely neutropenic.

So we hope that the cultures come back negative and she gets better soon. Our poor punky :-(