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 :-(

Pictures from Cycle 1

I finally got around to uploading and resizing pictures. We had a GREAT 1st Cycle even though we were there for 6 days. Mallory did AMAZING, I was so pleased with all the nurses this time. They helped me through the night so that I did not have to get up with her every 2 hours to change her diaper. Jillian came to visit as well, she did AWESOME this time. I missed her like crazy so it was nice to see her bright smiling face.

We have to change her diapers with gloves on because of the chemotherapy.

Mallory and Jillian recieved bears for smiles. They send these to families who are battling cancer, and the GIRLS LOVED THEM (GO HERE for more information)

MALENTINES DAY

They spoiled the kids by bringing in puppy's! HOW FUN!

I love my bald kiddy, she's AMAZING! 

Poor girl had to be hooked up to so many stinking wires the whole time!

We bring pictures with us every time we are up at the hospital. This time I had her "Cancer, I'm gonna squash you like a bug" picture up. Everyone LOVED it and couldn't believe it was actually Mallory!

Everyday is Blessed

Everyday we get to see our beautiful girls sweet smiling faces we are blessed. Every giggle we are blessed. Every moment of everyday we are blessed.

Our next round of chemo starts March 1st. Another 6 day hospital stay, another 5 nights of Topotecan and Cytoxan. And after that another scan to see how it's working. But each of those days is another day I get to spend with Mallory, where we get to cuddle night and day, another chance at her having many many birthday's.

The rate of death of neuroblastoma in the 1960's was 0%, Now in 2012 (in Infants) has gone up to nearly 90% survival rate! So we are just counting on our Daughter being part of these 90% of children that fight to make it. So far she has done incredible, she is smiling, she has beautiful PINK rosey cheeks, she is so giggly, I am amazed. My daughter gives me strength. But no matter the outcome, I count my blessings because each day I get to spend with these girls is the best day of my life.

Home Sweet Home

When you've been away for almost 6 days the smell of a fresh clean house is AMAZING.

So many amazing cards, letters, and presents were waiting for us. All I can say is you all are INCREDIBLE! We will get through this but could not do it alone so the outpouring of support just makes me speechless.

Mallory has been jabbering up a storm, I was ready at 9:00 am to get OUT OF THERE. We get to spend 2 weeks at home and go in for Cycle 2! She will have 5 days of inpatient chemo again, and then a CT 2 weeks after that round. I've got my fingers, toes, and everything crossed that this will WORK!

Mallory is AMAZING! She is my buttercup and I can't wait for the day when we can put this all behind us. Thanks again everyone!

-Ashley

Chemo SUCKS

We are night #4 now, I can hear the alarms going off on the infusion as we speak. She gets 30 minutes to the topotecan and 1 hour of the cytoxan so we do Chemo for an hour and a half total, the rest of our day is spent hanging out while she is on a constant heart monitor.

She feels so crummy today, she was eating great this morning but it just has gotten worse as the day progresses. We were informed today that we could not be discharged if she was not eating they would have to supplement with TPN. So still hoping we are out of here on Wednesday but it's not looking likely and she still has tonight and tomorrow left on chemo.

I am surprised I even had time to write this Mallory will NOT let me put her down today. She just really needs me, and these hospital chairs SUCK, my butt hurts from sitting in it all day long.

Perspective

One of the hardest parts of Cancer for me isn't watching my daughter suffer. It's watching my 2 year old be raised by someone else. This does not mean that I do not appreciate every ounce of help we have gotten but I am a stay at home Mom that now has to give over control, that has to have faith in Mallory's doctors, to have faith in my mother that she will raise my daughter the same way I would (she did an AMAZING job raising me so I have no doubts whatsoever that she's doing an AMAZING job with Jillian!).

Cancer has given me a new perspective. A perspective I wish I could give to each and every one of you. I would never wish this upon anyone but I wish I could share some of the knowledge I have gained.

Perspective to me means no longer having absolute control, it means letting down my guard and allowing myself to learn from this terrible situation. It is no longer about thinking about walking in someone elses shoes, its about walking in them myself.

Perspective is when your child's first round of chemo doesn't work, and you go onto plan B, it gives us the perspective to not take our health or our children's health for granted.

Perspective is when you know the kid, 4 rooms down from you is fighting for his life, that he needs someone to die so that he can live.

Perspective is when the sweet girl you met in clinic is rubbing your daughters bald head and smiling about how much she thinks Mallory loves her (and trust me Mallory DOES love her) and knowing that this girl is fighting for her life as well. With a little bit of hair and a WHOLE LOT OF HEART!

Perspective is when you get a call from a Mother sharing her daughters struggle with cancer, listening to her weep about losing her baby. And knowing not a single word can be said to make her struggle any easier.

Perspective is accepting that you do not understand each individual struggles. Perspective does not hold a person back, it only makes them wiser.

Perspective has shown me that when I'm downstairs folding laundry and I come upstairs to see my 2 year old's beautiful crayon artwork all over my white counter tops that it doesn't matter, it is accepting the fact that she is 2 and in 10 years she won't be drawing all over everything.

Perspective isn't about feeling sorry for someone, it's not about letting other people's struggles consume you, it's about watching through the window, counting your blessings, and it's about making the road you walk a wiser, stronger, and more resilient journey.

So if you cry when you think about my daughter, know that this perspective only makes you a better person, because you haven't walked in our shoes but you yourself can be a stronger person because of it. So many of you have put forth so much effort to make this journey more bearable and less intense, Perspective to me means accepting help when I need it, when my children need it, and because of all of you I have gained the perspective to become an AMAZING person, to come out of this more alive, with a future planned and the perspective to help others like everyone has helped us.

Cycle 1, Day 1

We were informed Mallory is no longer considered a stage 2b patient but a stage 4 now. This is not what we had wanted but we assumed she would be now. They told us that they had a hard time staging her to begin with but with the spread to the liver this automatically bumped her up the scale. We just pray this heavy duty chemo works for our tiny bug.

So far so good, Mallory didn't have any bad reactions. She fell asleep during the cytoxan.

She is hooked up to the oxygen censor, a blood pressure cuff, EKG leads, and fluids running 24/7. So needless to say it's really hard to move around with her, it's hard to change her diaper, and there are LOTS of cords for her to grab onto. We also get to wear gloves every time we change her diaper.

We had a REALLY great nurse last night, we have to change Mallory's diaper EVERY 2 hours so that the chemo doesn't sit on her skin for long periods of time but she ROCKED and changed almost every diaper for me (there was no way I could wake up every 2 hours on the dot to remember to do it). And with the tons and tons of fluids running through her she goes through diapers like crazy! Her kidney function looks great along with her urine output.

We were told that we should anticipate by the 3rd day for her to start feeling bad. Reduce in appetite, more lethargic, and for her to not be her happy bubbly self. :-(

I would like to say THANK YOU to everyone for helping us out, we have just had an out pouring of support and we couldn't do it without you all! Thanks for all the emails, the gifts, EVERYTHING, nothing has gone unnoticed, Ryan and I are constantly gushing over your cards. My girlfriend Erika is setting up a calender so that when we are here or at home you can sign up to help us if you'd like.

Jillian is coming up today, so while Ryan's mom gets lots of Mally cuddles we get to run around the hospital with our 2 year old. I am SO excited to spend some time with her finally!

What does Cancer Mean?

It means getting down on our knees everyday and praying.
It means that it makes our daughter very sick.
It means no longer being selfish.
It means being away from our 2 year old.
It means spending more time in a hospital than at home.
It means having bad days.
It means having good days.
It means accepting things that we cannot change.
It means relying on others to get us through this.
It means having faith and keeping faith.
It means watching our daughter suffering.
It means waiting. Lots and lots of waiting.
It means being part of the oncology family.
It means fighting.
It means focusing all of our energy on our daughters healing.
It means that we have to take time outs.
It means that we have to have faith in her doctors.
It means crying.
It means laughing.

Cancer does not only affect our child, it affects our whole family. It affects our relationship as a couple. It affects our Jillian. It is something that we have accepted, we are ready in a moments notice to do anything for our daughter. It has become our life. As much as we try not to let it, it does. She is worth every penny, she is worth every tear, she is worth every moment. We planned for this baby girl, we planned on having her, and we will keep fighting everyday for her. To see another smile, get another cuddle, kiss her everyday., in the end all of the stress, the heartache, the anxiety, the sleepless nights, they are all worth it.

Address

Anything you can do can be dropped off or sent to

Laura Crandle
3736 Hazelwood
Wyoming MI, 49519

This is my wonderful Moms house. She has been taking primary care over Jillian while we have been in and out of the hospital, she has just STEPPED up to the plate so much for us. We couldn't get through this without her! 

Friday Starts a LONG LONG ROAD

 The good news is the MYCN is NOT AMPLIFIED! PRAISE THE LORD!
What this means is she still in the intermediate risk category and not the high risk.

The bad news is, we start a LONG LONG course of treatment.
We will be doing 8-12 cycles. Which means each cycle is 21 days long, we are admitted to Helen Devos for 5-6 days each cycle.

This is MONTHS and MONTHS of treatment. We will be doing a CT scan every 2 cycles and an MIBG every 4 cycles.

She will be receiving heavy doses of Cytoxan and Topotecan. These will be very hard on her, she will have to be hooked up to IV fluids the entire time we are in the hospital. She will be monitored the entire time. And we will be doing daily neupogen injections once we get home. And she will not feel well at all, it is a very very very hard chemo on anyone let alone an infant.

This will equal a lot of time away from Jillian.
This will equal tons of money for hospital expenses (not medical because Mallory is on Children's Special Health Care which takes care of her Cancer Related Care), for the gas to and from, for food and other basic necessities.

We are not asking for a hand out but if you can help in anyway our family sincerely appreciates it. I will be re posting "take them a meal" this is HUGE to us. We have a long road ahead of us the next 6 months at least, so if you can bring us something, get us gift cards for places at the hospital, or in anyway help us we need it right now. Grocery's for food for Jillian for when she is away from home. Small travel size supplies are wonderful as well, shampoo, conditioner, soap, toothpaste, toothbrushes, deodorant, disposable razors, etc. ANYTHING. Help with housework, anything, anything, anything!

I am STRESSING once again the importance of not being around our family if you are ill at this time, we cannot delay treatment due to Mallory getting sick. But we NEED help, so if you are well, have time please come help us. Mallory needs all of you, she needs us, and she needs you.

We are going to fight this, we are going to keep our chins up, we are going to get through this. It's just going to be crazy for awhile. I posted pictures from the day she was born, because this sweet baby HAS to see her 1st Birthday, she has to see many many many birthdays.
 So we can celebrate just as much as the day she was born!

The waiting game

We are scheduled for Chemo this Friday at 11:30.

Today I am nauseous. Sick to my stomach. We are playing the waiting game once again.

Dear Lord, please HEAR my prayers. Please look over my baby, please keep her safe, please let her live the rest of her life. You gave this child to me for a reason, and I just need her. Please heal her. I am having a hard time keeping faith right now, please heal this as well. Amen.

There was no news on the MNYC amplification yet again today. We knew that it would be later in the week, I just held out some hope that we would get some answers so we can start looking forward. I am having a hard time today. I sat on the kitchen floor Jillian cuddled up in my lap and Mallory sitting in her bouncer and just cried and cried and cried. I smelled their hair, I touched their skin, I just cried.

I know that I HAVE to stay positive, that I NEED TO BE STRONG. I have faith that my Malibu is a fighter, but I am having a hard time keeping my mind focused on the goal right now and that's because there is so much unknown. Please let this tumor be no different that the last one, please let this chemo work.

She just amazes me, as I cried and cried and cried, she giggled and giggled and giggled. I wish I knew what babies were thinking. I just cannot lose her. I can't. I would trade places with her in a heartbeat.

Life doesn't go the way you plan it, it just happens, there is a reason for every season. Right now I am struggling, struggling so much. The last 2 months have been so slow, every day it just drags, every phone call puts my stomach in knots, every little thing bogs me down. I keep telling myself we will all be ok, we will come out of this stronger than ever. We already have come so far. Now we just wait for the rest of the puzzle to come together, and please let it have every single piece.

Honestly

I am sitting here eating hot dog buns, yep totally honest, open and not gonna lie I am pretty much really drunk. So to sober up I am eating hot dog buns (It's the only fresh bread we have in the house currently so I know it probably would be much more appropriate to say bread but that's not the case). I have 100% decided that I am writing this for ME, for Mallory, and we write this because we are not here to butter up Cancer, any of the crappy things that come along with it, or the situation we are in. And I am 100% that I am REALLY drunk right now and I needed it.(THANKS MICKELLE!)

Ryan and the girls are sleeping, and yep I am sitting here eating hot dog buns. I am pretty much as awesome as it gets.

I will probably regret drinking by the time 8 am rolls around.

I tried to lay down, but I have sleep induced anxiety, pretty much my bun of messy hair hits the pillow and every possible situation runs through my head. Cancer is not only consuming my child but me to. I am physically losing my hair, it looks like chubahka (however you spell it) is living in my bathroom currently. So when you pick stray hairs out of Mallory's mouth assume they are from me because they are. My house is covered in hair and I can't blame my cat this time.

I can't believe it's been over 2 months since Mallory has been diagnosed, seriously where did 2 months go? Ever since this past weekend she has laid down at EXACTLY 11 every night, she's been eating 4-6 ounces, and is just doing great! She is back to normal baby mode again. We have scheduled to be admitted again friday for Chemo, they should have her pathology results back by then and a game plan ready so we are just being put down for that day. We have nothing to go by except this.

This week is dedicated to vegging out, cuddling up, and answering non stop phone calls in between. After several phone calls today I got prescriptions refilled, questions answered and insurance information filled out. Monday is done (CHECK!), we should hear something tomorrow about an admitting time and possibly pathology results, but most likely Thursday for those is what they told me. They have to grow the tumor in a petri dish and do tests on it which is why it takes so long. If only they knew how to cure the tumor instead of growing it would be nice.

I did forget to mention that we picked up Jillian yesterday and I was pleasantly surprised to hear her say "Lets GO! READY". She loves staying with Nana and Papa but she was ready to come home. She JUST turned 2 on December 30th so she is JUST understanding things a little bit more, so it freaks me out to leave my Jillian with anyone for long periods of time because I am terrified of her not remembering what "home" really is. (Not that my parents don't do an AMAZING job, because I totally always get the same kid back that I left with them. I am pretty sure she learns a few new words every time she's there too which is always a PLUS. Our new favorite "STOP THAT"). This is not the case, she is begging me for attention 24/7, I love the extra snuggles, the kissy lips, and the non stop chatter. I miss this when we are in the hospital, it breaks my heart. It's also hard to bring her up there, she is a LOT of work, we are constantly saying "no", and it just isn't fair for her because it isn't any fun. She deserves fun, she deserves normal, she just deserves so much and right now so much of our time is dedicated to Mallory's care that I try not to lose sight of this. Our goal is to have a well rounded child, with a stable home, great parents, and an all around FUN childhood. And the fun part is only possible if we keep her "innocent" as long as possible. We are trying so hard to make the best out of this.

So tonight was good, I did cry, but I laughed, I laughed a lot and it felt GREAT! I climbed into bed, touched Mallory's head and decided I couldn't sleep but now that I ate my hot dog buns I think it's time to try again.

Good Night All!! :-) - Ashley

Our Little Fighter!

Our Little Fighter!

These were taken before surgery. Mallory was cute as can be, she was without food for 8 hours before surgery and was still feeling pretty happy. She just is incredible, for having to go that long she still rolled around, grabbed her toes and smiled! I argued with the nurse about putting on the pre-surgery outfit on Mallory because Mallory LOVES her broviac, she tries to tug on it, eat it, and they wanted me to put her in a no back outfit while we waited 2 hours for the OR. Ummm no, so she went in wearing her Daddy's Princess shirt instead (YEP Momma Bear Won that one!) My Mom is amazing, she has been there for us through EVERYTHING! She knew how much we were struggling when we got the CT results back so she came and helped us past the time while we waited.

These are after surgery, she did AMAZING! There was very little spillage from the tumor (which happens in biopsy's) but we found out her liver has many cancerous lesions on it. Which is very common in Neuroblastoma. They also replaced her broviac and put it on the other side of her chest because it hasn't been drawing the greatest for labs and since she will be receiving more chemotherapy than originally planned they figured they might as well get it done now while they already had her under.

She slept so much for the next 24 hours due to them keeping her up on morphine, so she was comfortable. It was hard seeing her go through another surgery, especially since she was much more vocal this time. You could hear her whither in pain whenever we would move her. 

But 2 days Later she couldn't STOP smiling, she even started giggling TONS! So Proud of my punky! She received her 4th blood transfusion and we skipped on home. So now we wait this week to hear back on results, it'll be a tough week but we are going to do whatever it takes to enjoy it before we get back in Cancer mode.

Baby Vamp

Miss Mallory is getting her 4th Blood Transfusion.

Her hemoglobin was 8.2 three days ago and has remained there since then. I had to fight them to get a CBC done again. Since we are dealing with surgery and not the oncology team they wanted to run a " reticulocyte" count to see if her bone marrow was regenerating her blood cells fast enough. And it's not. If I would have dealt with the oncology doctor we could have discussed her blood counts and had this taken care of. Now we get to sit here till 7 while she gets a transfusion.

I wanted her to get one, being anemic and a baby = double trouble. She gets cranky, lethargic, and pale. This equals miserable for EVERYONE in our house. So I am glad she's getting it, I'm just not happy with how many hoops I had to jump to get it done. I realize we are not the only ones on this floor but we had to get permission from surgery, then they contacted oncology, then they got back to surgery, finally got the order in, ran the CBC, then the reticulocyte count, and then ordered blood. 5 hours later. We could have skipped a GIANT step had we not been admitted under surgery.

We will NEVER be admitted under surgery again, even if I have to be here several hours before we get admitted. We could have addressed this issue yesterday and been home earlier today.

I am hoping that we get some results early next week, I am very very fearful for Miss Mallory because she didn't respond to this treatment. We haven't been able to talk to a doctor so we don't know if this pushes her to a stage 4 or stage 4S neuroblastoma. We are fearful that the NMYC is going to come back amplified which takes her from a 90% survival rate to under 60% and she would have a much higher chance of relapse if this is the case. High amplified stage 4 Neuroblastoma has very low survival rates, high chances of relapse and are very very hard to treat. We can only pray that they were correct that she has the Non Amplified Neuroblastoma. We are also fearful of the ALK gene they are testing for, if this is the case it is a genetic marker that one of us carries. If it is the ALK type of Neuroblastoma they have a specific treatment for it, but Jillian and any other kids we might have, have an increased risk of having Neuroblastoma.

Talk about a huge heavy weight on our shoulders right now. My mind is weighing every possible outcome right now and no matter what it's going to be a tough road. I keep kissing her little bald round noggin and all I can think about is not feeling the warmth of cuddling up to her, not seeing her smile, not hearing her laugh. I know I should try to steer my head far away from these thoughts, that I shouldn't think this way, I haven't given up, I won't give up but they are still there. My heart still aches.

I am going to try to stay as positive as possible, allowing myself to have bad days and good days. This is just tough, it's unfair, its brutal, its ugly, Cancer is UGLY. Mallory's 1st year is going to consist of being in and out of the hospital. Instead of looking forward to her rolling over all the time, we get to worry about her tangling up all the cords around her, instead of looking forward to her crawling we have to worry about her pulling her broviac out of her chest, instead of looking forward to her walking we get to be worried about chasing her around with an IV pole. It's crap.

We're getting married in July, instead of looking forward to our wedding I am hoping Mallory will be done with Chemo by then, all I care about is her being better, her scans coming back clean, her being back to normal. I could care less about our wedding, we arn't going to have the time, the money, or the energy to plan anything. We most likely will not be going on a Honeymoon because we're going to be in Cancer mode still and I can't spend a week away from Mallory while she goes through this. I have to be in control of the things I can be. I don't want to designate tasks and stress over someone getting stuff done for me. I just can't deal with any of it, I can't think about it. I am very fortunate we booked the hall and church before Mallory got sick or else that would have never gotten done. I picked out my dress 2 days before Mallory was diagnosed, and Ry's Mom found the perfect dresses for Jillian and Mallory. So I have a few things done and that will just have to do. All I want that day is to walk down the aisle, marry my Best Friend, and have both of my daughters there to share in the celebration with us.

I honestly want to cancel the wedding, go to justice of the peace, get it done so I don't have ANY more stress right now. But we've already put deposits down that cannot be refunded. So it is what it is.

I am holding out SUCH hope for a Miracle, for a chemotherapy regimen that works for our princess pie. Thank you Cancer for the pile of shit you have thrown at us, it's making life unbearable some days. I'm sure this week is going to be FULL of those days too. Waiting is the worst part. Knowing that the cancer could be spreading as I write this post is nauseating.

How do you get through this

People says this all the time to us, "How do you get through it, I could NEVER do it".

If you would have told me when I was 6 months pregnant that I was going to deliver a baby who we would later find out had cancer, it wouldn't have changed anything. I wouldn't have abandoned her, I wouldn't have changed a single thing.

She fights for her life everyday, we watch her go through this and yet she prevails, she is stronger than we are.

If you were in our situation you could to. You do what you have to do to keep moving forward. I said there was NO way I could change her dressings (on her broviac), end caps, or give her daily medication and guess what I do. I actually consider myself to be better than most of the RN's here at doing them. I could probably do it blindfolded. (Not that I would try lol).

I also said I could NEVER give her shots, NO WAY, absolutely not. When our nurse Julie said "do you want me to do it and you to watch", I told her to hand me that needle and walk me through it. And I did it. I've given her a shot 5 different times now, not enjoying them at all but I do it. I do it because it will help her, it's just one more step we have to do to get her to recovery.

This journey has had the lowest of lows and the highest of highs. I've never cried harder, but I've never laughed harder either. Seeing a 2 year old ask a doctor if "they want a drink from her tubbies" and to "tuck them in her bra when they are done" pretty much is the funniest thing on the planet.

This is life for these kids, they are used to it, its what they know. They are little miracles, if you had to go down this road you would do the same thing we do. You take it minute by minute and day by day because it's the only way you can get through it. You cry, you laugh, you lose faith, you find faith, and you repeat these things everyday. It's hard to keep faith when you think about all these cute bald kids running all around on this floor, but then you talk to them, you know them by name and they give you faith back. Because they are being given poison to keep them alive and they smile through it so all of us parents keep going because of THEM.

We are staying 1 more night, voluntarily. We could have gone home, but at home we don't have the option of morphine if she needs it, we don't have constant monitoring, she is still not taking fluids great and she still hasn't gone #2. So I think we're staying more for me than for her but I know I wouldn't be able to sleep well at night, I would question every little whimper, and I wouldn't have an RN answering ALL of my questions, I would be so worried the whole time. Seriously they did open abdominal surgery 2 days ago, so I think I'm a little freaked out about bringing her home. Last time we were here for a week after her surgery. Sure she's smiling and being cute, but I think 1 more night will make me a lot more comfortable going home. So we get to vedge out 1 more night here and I'm ok with that.

Smiles

Yep you heard that SMILES, heart melting WONDERFUL smiles tonight. Mallory is doing MUCH better, she hasn't had morphine since this morning, she's smiling like crazy and she's no longer whimpering every time we move her around. YIPPIE! ohh and she's poofing (I don't like the word fart, because girls totally don't fart), one of the requirements before we go home is she has to go #2 so poofing is a good sign. (Someday she will KILL me for writing this!) 


One of the kids 5 doors down from us has a sign on his door.

No doctors with bad news
No family without presents
No nurses with chemo
and that he needed a gift cards to Qdoba and Track Phone gift cards.

So naturally we had to give him a gift card to Qdoba, so we slipped a gift card and a little note saying that we LOVED his sign, that we hoped his belly would be full of good food soon.

So a few hours later a nurse shows up with tupperware full of food for dinner for us! So naturally I send him a bag full of Mama Wiersma cookies. (She brought me a WHOLE container of them for comfort food) I told him that obviously I did not bake them because Microwaves don't make the greatest cookies, and since Mallory couldn't eat them she certainty enjoyed the smell and that we ate some for her :-p

So this place may suck but at least were having a little bit of fun.

We totally get it

Yup we got shitty news today, its all over her liver. The chemo didn't work it's growing despite our hopes and prayers.

We are thankful God watched over her through another surgery, that we will hopefully have some answers soon that will get her through this.

They sent a piece of the tumor to Philadelphia to see if there is the ALK gene within her neuroblastoma that could potentially make it easier to treat. We have to read further into this, we just signed the paper and said GO!

Whatever it takes.

Biopsy results we should have by mid next week, right now we focus on Mallory healing. On loving her up, cuddling, and kissing her.

The title of this blog is because a lot of you don't know what to say to us. We've been there with other families and there isn't much you can say except what you've been saying. Please don't stop, you may feel like your being obnoxious but your absolutely NOT! We need it right now.

If you come over we DON'T have to talk about Mal's cancer unless you want to. I can laugh, I may cry but I have accepted this. It's ok. I want to hear about your kids goofy stories, how naughty they were and how they drive you up the wall. Don't feel like you can't complain because Mal is sick. She is sick, she has cancer, but she can drive me crazy too. (Trust me 128 days of waking up every 2 hours would drive you crazy to regardless if your kid is sick or not).

I want to be clear about this because I need my friends and family to understand moping just because you feel sorry for us doesn't help us. So crack a joke, give us a hug, feel free to cry but don't just mope because that's what you think we expect. We don't cry all day long, sure we have our bad days but we have a lot of good days too. I want to enjoy Mallory through this too, and sitting around feeling sorry for her and ourselves (not saying there are not days because there are) 24/7 doesn't fix the situation, it doesn't cure her cancer so we choose to smile, laugh, and enjoy every single moment we can. Of course we cry, we have days where this just doesn't make sense, but it is far from everyday.

Mallory has cancer but this does NOT make her any different than your babies, she rolls over, giggles, sucks her thumb, and attempts to hold her bottle and she smiles all the time!

She is in pain this time, a lot more pain but she's pushing forward. A touch more morphine and she should be doing better tomorrow. She won't eat anything besides glucose water but that's totally fine for now.

Just stop say a prayer for my punky that she feels better soon and we get results quickly.

Done

Mallory is out of surgery and doing great. Poor girl has the saddest whimper. Everything went well, there saw a lot of cancer on her liver. Very little spillage from biopsying the tumor. We have no other information besides this currently. We will be staying the night for sure.

Am I allowed to reapeat

What the $%#*? (I censored this time or spectrum health deems my language inappropriate to view)

Mallory is in surgery, another open abdominal procedure. It is pretty guaranteed that there will be spilling of the tumor which can cause more cancer growth from just doing the biopsy.

The histology could be worse than originally thought.

They are pretty positive that its growing from not responding to treatment and not dying. Majority of tumors shrink or remain the same size and do not grow.

So pretty much none of this is good.

So thankful my mom is here to support Mally and us. Although this is not as complicated as the last surgery it is still huge. This could potentially change the game, I almost feel like this is bigger than the last one. Our sweet Mallory is fighting a horrible cancer and we could not get through it without my parents. They take the girls on a momennts notice, they take them without a single complaint, I can only hope to be the same way with my kids. They have Jillian 2 days minimum a week, plus my mom comes over almost everyday to help me.

I don't know how to ask for help. I just can't, and my wonderful mom calls me and just says "I'm on my way". I am so blessed to have her, I breathe a big sigh when I know she's coming.

I just wish and wish and. Wish wish wish wish wish wish wish this could be over. That Mallory would be fine, I fear stage 4, I fear high n-myc amplification, I fear the pain she has to suffer even more now, I fear her not getting to her first birthday, I fear losing her.

Surgery #2 underway....

The just took Maui (Mallory) back for surgery. They opted to do open abdominal surgery, so we are probably going to be here through the weekend.

The doctors also told us that there is virtually no chance that the tumor grew because it was dying and swelling. Most likely it grew because it is unresponsive to the current chemo regiment that Mallory is on.

Great.

Prayers are welcome and encouraged.

Early morning

Ryan is a rock star of a dad (I may use this term a lot, but clearly my family is just a bunch of rock stars). He took Mallory all night so I could get a good night's rest. We will most likely be staying the night tonight, she's done really well after general anesthesia before but they like to keep young kids over for observation. Praying that we don't have to wait for the pathology again, that they can give us answers quickly.

I've been thinking a lot lately about the up's and down's of being a parent. My pregnancy with Jillian, text book perfect (minus some slight sciatic) and Mallory's was a train wreck from 30 weeks on. In the hospital out of the hospital, I had tons of preterm contractions with her, I also had horrible rib pain when I was pregnant with her. I remember asking them why they wouldn't do an ultrasound to check on the baby? They kept telling me that everything on the monitor looked fine, dosed me up with some medications to stop my contractions and sent me home. My MOM radar was going off, and I didn't even know it. But at 39 weeks and 4 days Mallory joined our family, a chubby 7lb 10ounce baby with the most adorable chubby cheeks and buddah belly.

Then 2 weeks later I had the most awful Galbladder attack EVER, they sent an ambulance. If you knew me, you'd know it takes a LOT for me to say yes to getting an ambulance ride. I didn't know what was wrong, I was on the floor bawling, grabbing my stomach, screaming. When we got to the hospital the pain had stopped, they did an ultrasound and I had gallstones and an infection in my pancreas. I didn't know it but when I was pregnant I was having these pains, this is what caused so much discomfort in my rib cage.

2 weeks before Mal's pediatrician found the tumor, we saw another doctor. Said she had reflux and sent us home, My mom radar went off there also.

My point is to LISTEN to yourself, listen to your instincts, and FIGHT for your child. I didn't think I'd be one of those crazy Mom's who's ready to storm up to the hospital and demand answers. But this is MY child, and I will NOT sit back and take ANY chances with her.

So I've met many many parents through being a parent myself. And you totally don't understand it until you are one yourself. But you surround yourself with these Mom's. We all do things differently, we all make different decisions because our children are different. There are many many times when I don't agree with someone's parenting style but I accept that they are doing what they believe is best for there child.

Jillian is totally unlike most 2 year old's I've seen, so I raise my voice and she listen's, she doesn't do anything intentionally naughty (MOST OF THE TIME), and she just is DIFFERENT. I accept this, but I also accept seeing my best friends having to discipline there children, I accept that they have different methods. No one is WRONG at this.

I have a lot of friends that are currently pregnant, and the only advice I have is educate yourself but don't stress over it. If you have to have a c-section who cares, if you get an epidural who cares, and if you do it all natural who cares. Keep your eye on that prize, that sweet baby, and the only thing that SHOULD matter is if it's healthy. If it takes a c-section that that's fine, if you can't manage the pain you tell them you need an epidural STAT, and if you just change your mind after saying "no medication" its FINE! No one will judge you, it doesn't make you less of a Mom. You baked that baby, and trust me it's always easy!

I am a Mom of 2 girls, I thought my first one was for SURE going to be a boy, I convinced myself of it, but when we found out that it was a girl. I was delighted, amazed, and totally taken back. Honestly who cares if you have a boy or a girl? It shouldn't matter, you are given what you given because God KNOWS that you will be the best possible parent for that child regardless of it's gender.

How was I going to take care of a little girl? I think it's awkward playing barbies with kids, and doing hair (for being a girl I am NO good at it), and I don't have any obsessions with being fashionable. But I adapt, my little girl doesn't even like baby dolls that much, she likes EVERYTHING. I had convinced myself that I was going to live in a pink dollie for the next 18 years. Totally not the case. I even do her hair everyday, some days we stay in our pajama's, somedays we get dressed. There's no right or wrong. I made my own baby food, I do not frown upon a Mom who totes around a jar of baby food. I do it because honestly I'm cheap and I enjoy making it, although I did go buy some Gerber baby foods for Mallory last night so that I could bring them to the hospital with me :-p But who CARES is my point.

Your kids can TOTALLY drive you crazy, sometimes you yell when you don't mean to, sometimes they do things that downright push you to the edge. And we all make mistakes, I've swatted Jillian's behind because I've gotten so frustrated, It was a mistake (I do not frown upon spanking, I try to use it as a safety punishment for the most part so I get my point across) she didn't deserve that punishment for the crime. I accepted it, learned from it and moved on. I am not perfect, I am not super Mom, I don't have all the answers. I am just doing the best that I can do.

And that is ALL that matters. Be proud of the kid you were given regardless, because life is precious. Somethings you can't plan for, kid's totally have there own plan in there heads, so accept it. Accept that every person is different, you can try to prepare yourself for EVERYTHING but sometimes it's just not going to work that way. Do not judge your friends for things that they, accept that they are doing what they think is best.

Today I am bringing my daughter for a biopsy of a tumor that in spite of treatment is growing, This isn't what we picked, it's the cards we've been dealt. So we're going to play these cards, we accept it, we keep moving on. That's life and it's all you can do.