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)

Scan Dates

May 15th - Mallory has a Liver Ultrasound & MIBG Injection
May 16th - Mallory has her MIBG scan.

PRAYERS PRAYERS PRAYERS. The next month is going to be severely stressful for us. The scans are one of the WORST parts of the process, the uneasy feeling that stays in the pit of your stomach never goes away until after you get the results. AHHHHH XANAX COMA for me.

Today was a GOOD day

We spent majority of our day being lazy bums. Mallory slept on me for a great deal of the day (feeling pretty crummy from chemo) and Jillian danced, sang, and just goofed off. All 3 of us ended up taking a 3 hour nap, Jillian and I took a shower (we combine them in this house because either way Jillian will somehow end up in the bathtub, with or without clothes, my choice hahahaha!) Ohhhh and I actually had enough energy to MAKE dinner! GO ME! Ryan mowed the lawn and got the car washed too, where oh where has this energy come from all of a sudden?

Mallory is working on getting her 2 front teeth too :-) I see them coming and I can't wait! She also sat up for like 1 minute long yesterday with the help of the hospital couch (the pictures from the last post), she's starting to push up on her arms here and there too! She is getting there and I am SO SO SO proud of her.

Jillian also learned how to "HI PIE" today! (High Five!). She ate 3 potato chips for dinner, I mean really who likes potato salad, stuffing, subs, sweet potato's when there's chips around! Stinker :-p

Tomorrow is a CRAZY busy day for us, between clinic, therapy, eye doctor, plus a Celebrating More Birthday's fundraiser later in the evening we are PACKED.

Ryan is taking Mal to clinic, hopefully she won't have to have any transfusions so that he can just get her blood drawn, wait an hour, and make it home and back to work before noon. My Mom is sitting with Jillian at my house while I run to therapy and the eye doctor (my lovely lenses are cracking and I'm getting an exam as well)

I start therapy, let's see paper work is filled out.
Angry Outbursts (CHECK)
Anxious feelings (CHECK)
Grief / Loss (CHECK)
Mood shifts (CHECK)
Insomnia (CHECK)
Panic Attacks (CHECK)

I think I checked half the list off, ohh the joys of being an Oncology Mom.

Although Mallory has finished her chemo and we are celebrating this HUGE milestone, relapse scares the CRAP out of me. We have to go to continuous apt's to check her catacholomines, and have scans for years before she is deemed "cured", each year that goes by her chances of relapse go down and down. I want to be able to enjoy the rest of her first year without the constant fear in the back of my mind that this is a small possibility. Mal's neuroblastoma threw the doctors for a loop even, double adrenal gland tumors, non responsive to standard protocol, spread to the liver, and her age makes it hard to diagnose and it's been tough to treat. I just need to breathe, enjoy each day, and get through it. At the end of the day what is the most important is our family. Hopefully we can go back to living normal life, it'll be a change that's for sure, an adjustment.

It feels great to be home, to snuggle the girls, laugh with Ryan, and just enjoy our time together. Something I am totally looking forward to this summer. Cookouts, swimming, and just doing nothing besides chasing around the girls.

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!)