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.

What happens when you find your bitch bone!

YOU GET ANSWERS!

Mallory will be having a biopsy tomorrow morning. She will be under general anesthetic and while they have her under they will be replacing her broviac as well.

They tried to tell me that they would let me know later today or tomorrow about what he said. And I would NOT accept this. That I HAD to know NOW that I would NOT wait for an answer. That they HAD to find me SOMEONE that could give me some answers. And I got a call back 10 minutes later. BITCH BONE WORKS AFTER ALL!!!

I am 100% for advocating for my child, I will not accept "ok" or "call back later". My child has a cancerous tumor inside her that is growing, I will NOT accept a waiting period. Time is NOT on her side, Neuroblastoma is a fast moving cancer, and we need to kill it as fast as we can so that Mallory can keep on living. So that we can just get back to worrying about her rolling over, or when she starts crawling, or when she starts talking. Instead these things are on the back burner, as long as she lives 1 more day thats all we care about right now.

We play the waiting game again

Jillian was standing at her door this morning saying "MOMMA OUT! Mooooommmmmaaaaa". So I knocked on her door and said "I'm coming" and she squeals back at me "YAY!!!!!!!" I open the door to get the biggest leg hug of my life. I sat down on the floor and she wrapped her arms around me and just let me hold her for a good solid 5 minutes. She knew I needed that this morning, she just knew.

Still waiting for our call about the biopsy this morning. The problem with this adrenal tumor is it is infused the inferior vena cava making a resection very tricky. Not impossible but very tricky. If she looses her 2nd adrenal she would also be on medications for the rest of her life, I'm pretty sure if it comes down to it, I'll take that over the chance that the cancer spreads.

I think the crappiest thing about this all is how naive we were. This happens to "other" families, Not us. Definitely NOT us. It still seems like a nightmare, that's partly because it is.

I thought life would go back to "normal" but that's not the case. I have appointments every Monday and Thursday, but some are 2 hours, some are 8 hours long. It just depends. Sometimes we go in on Wednesdays, sometimes we have a surprise ER trip. So I cannot plan anything out, I can only take the girls a few select places that I know are clean. It just gets old, when does life turn back to normal?

We continue to pray (don't worry I asked God to forgive me for all of my horrible language yesterday). I have faith, I know God has a plan for us, I know that he is working even though we can't see it.

It just seems like we go 1 step forward, 2 steps back. We're pretty much stuck in limbo. I can't get anything done because I am too busy feeling sorry for my child, I've let everything fall apart around me. I'm not sure where I find strength, I'm not sure how I find motivation. I just take it minute by minute and that's the ONLY thing keeping me a float right now. I put on a brave face for everyone, I smile, I laugh, but inside I am one giant pile of mush.

This is MY baby, the one that I gave birth to. The one that showed us from the beginning that she was "special", that she had a total different attitude, a different personality, a different EVERYTHING. She is strong, she is sweet, she is amazing. And I am totally giving her permission to sleep in our bed for the next 18 years if she wants. She just has to keep on fighting, she has to make it to the next day, she has to see many many birthdays.

When I am ready to give up, throw in the towel, that sweet little smirk of her's comes out. I am going to keep moving on because I NEED that smile. I need her to someday hug me, someday give me kisses, she teaches me how to be a better person, a better mother, and a better wifestobe. Shes taught me so much already, that little girl is a rock star, and we will fight every minute of everyday until she is better.

What the fuck?

After all that Mallory has gone through, this is the ONLY thing I can say. Seriously WHAT THE FUCK?

A year ago we announced that we were pregnant with this beautiful little girl, Jillian was dressed adorably in her "Big Sister" shirt and a year later I am heart broken. Because I had pictured this so differently in my head. Another happy healthy little girl, perfect, so perfect. And not that she's not perfect but she's had to put up a tough fight these past 2 months and to get this shitty news all over again just re opens every single wound possible. It is stabbing a knife into my chest, I hurt for my little girl.

I know its crappy to talk "bad" and have negative feelings, try to stay positive, try to keep my chin up. But I cannot bury my little girl, I can't. But those feelings are ALWAYS ALWAYS ALWAYS in the back of my head. That she could die, that I could lose her. That someday her cute smiling face won't be there.

FUCK YOU CANCER FUCK YOU.


I know we haven't run out of options, but of course we hit a road block, of course we might fall into the 10% of kids that don't respond to treatment, of FUCKING course this would happen to us.

I know we don't have all the answers, I know that there is a chance that this it is working but its a teeny tiny chance. Neuroblastoma you are a BITCH and we HATE YOU!

My daughter has suffered through 2 chemo treatments that have made her super sick, that have kept her regressed to a newborn. She can't eat, she can't sleep, and she just feels down right crummy. I just cannot take it, I can't do it. I can't hold it together, this is a load of crap.

WHAT THE FUCK?

excuse my language, I don't normally talk like this. but this is how I feel, this is what I'm feeling.

Now we get to play a waiting game, while my stomach is in knots for another week or two, while we figure out whats going on. In the mean time we wait on treatment which is just another chance for this stupid cancer to get bigger, to grow, to make my kid even sicker.

HOW IS THIS FAIR? HOW IS THIS POSSIBLE?

No news is not always good.

Mallory's CT showed that her Adrenal Tumor is getting larger. This could mean that the Nueroblastoma is not responding to treatment or that as it's dying it's getting bigger and pooling with blood.

We do not know anything right now. This kills us.

Her doctor is currently waiting for the surgeon to get back to him to let us know if it's possible to do a biopsy on the tumor. We are waiting on this phone call right now.

He also explained that there is some activity in the liver, what this means we are not sure but they will be watching it carefully from now on. Treatment is on hold until we are given the consultation with the surgeon on where to go from here. Which will include more waiting.

The more waiting that we do the more sick to our stomachs we get. Our poor girl has been through ENOUGH and this just adds more tests, more chemo, more everything. Seriously? Seriously? Why? Why? Why?

The only good news today is that Mallory finally rolled all the way over. She's getting bigger.

Say a little prayer for our sweet girl

This morning we go for Mallory's follow up CT to see if the Chemo is working. I just hope for her sake she does not have to go through this much longer, you can just tell the days where she doesn't feel well. Where she is just not herself. I just want her to be better. I know we will have 2 more rounds of Chemo, but to get some more good news is what we need.

These 2 rounds have knocked her down, make her feel just icky. Her eyes get red and puffy and her skin gets super pale. The weird part is that she finally gets back to feeling better and we just have to repeat it. So back into the cycle we go.

We start Round #3 of Chemo this Thursday, a 3 day hospital stay. She gets Etopocide again which is the Chemotherapy that made her really miserable the 1st round. She would start SCREAMING the minute it got into her system, they had to give her benadryl to calm her down. My poor poor sweet girl, she just doesn't deserve any of this.

The hard part is enjoying her being a baby. We LOVED LOVED LOVED Jillian when she was a baby, every little milestone she hit we celebrated. And It's not that we don't love Mallory as a baby, we just wish the next 2 months away, not because of her. Just because of what she has to go through, what she has to put up with, what she has to fight. It's been hard, she doesn't sleep good, she doesn't eat good, and she just has really bad days. As a parent that's hard to watch, and I wish it away. I am obsessed with her pig pudgy cheeks, and her round bald noggin, and her chunky thighs. Seriously she could make anyone even on there darkest days smile. How can you not smile when you look at her? She has the strength of a full grown woman (I was gonna say Man but we all know how they are deep down, wussies! Especially when they get a cold!).

So Proud of my Little Girl, SO SO PROUD!

We LOVE Nap Time

Today was one of those days where I desperately needed nap time to work, but it did not pan out that way.

Jillian is required to spend 1 hour of quiet time a day, if she naps great, if not ohhh well. We switched her to a toddler bed at 18 months old so that we could get the nursery set up for Miss Mallory. Low and behold Mallory has only taken 2 naps in the crib, *smacks self in head* I should have left Jillian in hers for a LONG time. I just did not want to buy 2 cribs.

So after a few months she started getting out of bed, playing, and running a muck all around her room. We super child proofed it, if she wasn't going to nap she was certainly going to spend some down time. And it works out perfect, she reads books, plays with her stuffed animals, and sometimes manages to fall asleep. I try to keep all the LOUD toys out of there just so she has to quiet.

Today was no exception no nap for Jillian except Mallory would not nap either, instead we laid in bed and she coooo'd and giggled at me. She is sooo smart, she is so ticklish on her right cheek and every time I kiss it she pulls her shoulder up, closes her eyes, and lets out the biggest heart melting laugh. I could just eat her up.

After an hour we went and got Sissy out of her room, I changed Jill's diaper and she says "Ohhhhh Noooo" and I said "what?" and for the next 20 minutes she repeated to me "WHAT? WHAT? WHAT". Seriously how can anyone NOT love this age? Yes she throws tantrums, does naughty stuff, makes a mess, but seriously how cool is it when they start learning to talk? I get the tantrums, you try wanting a banana and not being able to tell someone that's what you want, I would throw myself on the ground too. Totally makes sense to me.

Pretty much EVERY DAY we jump in my bed, we have a king size bed and it is AMAZING. Not only to sleep but to jump on! (Ok so I don't jump but Jillian DOES!). So Mallory and I lay on one side and Jillian bounces her little butt off. Today inbetween bounces we were counting Mallory's toes, I had Jillian count for me and she says "Ooooone, TU, TREE, *insert long pause* SSSSIIIIIII-X, Sephen, Eigh, TEN!". I was a little concerned not only for the fact that Jillian missed a bunch of numbers that maybe just maybe Mallory was missing some toes. But nope there's 10 cute piggies on those feet, 10 perfectly perfect toes that are ohhhhh so amazing and never stop wiggling. Someday we're going to have to invest in another king size bed to put next to ours so that we have enough room for ALL of us to jump! :-)

These girls amaze me. I don't talk enough about Jillian on here, I know this is Sweet Baby Mallory's page. But my 2 year old is incredible! She is sooo sweet, sooo funny, and so much more than I could ever describe. She has a constant soundtrack playing in her head, she dances everywhere she goes, in the middle of the store, at home, at her Grandparent's house. She is starting to say the FUNNIEST things. She has adapted so well to Mommy not being home as much, to me having to spend a lot of my time taking care of Mallory. I have not had a job since I had Jillian and that was a little over 2 years ago, and I am so lucky that I get to spend all my time with them. She can have off days, where she throws tons of tantrums, does naughty things and does not listen but that's what makes her "HER!" and we LOVE it! Jillian just morphs, she continues to grow, she continues to be the whimsical child that she was as a baby, and I am SO lucky to have a child like that, who can go away for a couple days and have it not effect her. She just falls right back into her routine and its so special. She is just AMAZING.

I have decided I have the best kids in the world. Jillian and Mallory you ROCK!

Relay For Sweet Baby Mallory

May 11th - May 12th get your walking shoes on and come join us at Lamar Park!
Join Team "Sweet Baby Mallory"


Mallory and I have had a LONG LONG week, we have had to do nuepogen injections since Monday and she's been so fussy. The nuepogen makes her body recover quicker from chemo, but can cause bone pain. Of which I am almost positive she's having her ANC is 14,000+ the highest it's ever been is 4,000. So on top of that the poor girl's white blood count was out of SIGHT at clinic today, so she's fighting some sort of cold.

She projectile vomited all over the playroom (talk about YUCK). She does NOT have the flu, she just had not eaten at all last night and I think she was being a touch gluttonous. But one glorious thing about last night was she did NOT take a bottle all night, so hopefully it sticks and she starts sleeping through the night (although I am NOT getting my hopes up at all).

We spent our entire day at clinic while they ran lots of fluids into her along with some zofran to combat and nausea she might be having. We also found that putting her priolsec into a bottle with some apple juice is the KEY to making her take it! FINALLY! Although I am totally against giving kids tons of juice, I am calling this the exception, I cannot handle 1 more vomit morning session. I had a breakdown and sat and cried in my laundry room after she got me, the floor, herself. It was so GROSS! I just cannot take anymore puke, this says a lot for a Mom to say this.

I am actually curious is our insurance will pick up the ticket to a good steam cleaning because Mallory alone has exceeded her "yearly" puke allowance on our floors. Why oh why did we buy a house with ALL carpet?

Monday is the big CT.

PRAY PRAY PRAY PRAY

We will have the results by Tuesday.
I am PRAYING so hard that the chemo is working, that all of that Mallory has gone through is making her better, that it is killing the cancer, that she will see many many many birthdays. That there is a light to the end of the tunnel, that we will be there very soon. That our little girl does not have to endure much more pain and suffering.

Happy 4 Month Birthday!

She inspires all of us.

Awareness

a·ware·ness [uh-wair-nis]
noun the state or condition of being aware;  having knowledge; consciousness

Awareness in itself is a first step. What you choose to do with it from there makes all the difference.

We choose to be aware and we are going to do something about it.

The 1st step for us was adding ourselves onto the bone marrow donor registry. Very simple and easy to get set up, 4 cheek swabs and they add you to the registry.
You can do that here! 


The second step we made was by creating a blood drive in honor of Mallory and all Children with Cancer. The drive is February 25th at the Grandville Walmart from 10am - 4pm
You can sign up here!
the zipcode is "49508" and the sponsor code is "goodale"



One thing I wish we would have done is donated our daughters umbilical cord blood. I know a lot of people that are pregnant right now or trying to get pregnant take a moment out of your day and sign up NOW to have them deliver a kit to your house to bring with you to the hospital.
For more information go here! 


There are many MANY MANY organizations you can donate to! Every SMALL amount helps, even if you can only give 5$, every little bit gives these foundations a better shot at making a difference.

The Children's Neuroblastoma Cancer Foundation 


The Sierra Rayn Children's Neuroblastoma Foundation- This foundation was the first one to contact us to add Mallory to there Little Hero's section. 


Children's Leukemia Foundation of Michigan


Get Well Gabby Foundation - they are in the process of filing paperwork. Gabby is a beautiful girl who earned her Angel wings on September 11th, 2011. She passed away 12 days before Mallory was born, I believe that she is personally looking over our little girl. Her story is the first one I read when Mallory was diagnosed, although Gabby was taken from this world her legacy continues on. This family is making tremendous strides in making a difference, they are our hero's, our inspiration, and although we have never met them they have changed our lives. 


Beach Haven -  is dedicated to serving children diagnosed with cancer and their families by providing retreats and other charitable services designed to help them connect with one another as well as with other families facing similar challenges.


St. Baldrick's Foundation - You can be a hero for kids with cancer by organizing a St. Baldrick's event in your community, shaving your head, involving your business or organization or volunteering at an event. This is an amazing program that focuses on finding a cure for cancer through public awareness, they raise money many different ways but the most profound way is by doing shaving of the head events!

St. Judes Children's Research Hospital


There are also MANY other ways to help. 


 1. Sitting down with your children and creating cards for the children at your local hospital. 



2. Finding a family and sending words of encouragement, offering help, and being supportive. As a Mom of 2 small children and 1 that has Cancer, time is not on my side, all of the help I have received through volunteers working with me emotionally, doing small bits of housework, bringing us meals, holding Mallory and just being there in general has been so wonderful. I don't think I would have kept it together as well without those people. 


3. Donating New toys to the the Hemotology, Oncology Floor. Each child at Helen Devos gets a "poke" prize every time they get poked. Toys can vary in range from 0-18years old. Anything you find on clearance, anything helps. Helen Devos Childrens Hospital is wear Mallory is treated.


4. Be conscience of other families. If you or your child is sick I cannot stress over how important it is to keep them at home. I realize that yes we all get colds, runny noses and coughs, although there are situations where you HAVE no other option but to go out but use proper hygiene and common sense. Cough into your elbow, don't wipe your nose on your arm, and wash your hands after using the restroom. Do not bring your child grocery shopping, birthday parties, church if they have a fever, are throwing up, or are not feeling well (They call it Motherly Instinct For a REASON!). This is a personal pet peeve of mine even before Mallory got Cancer (now I am overall way more cautious to the point where if you have a runny nose you are to stay at least a mile away from her). By making the choice to stay home when you or someone in your family are feeling under the weather you can prevent spreading this illness to other families.



5. WEAR GOLD! GOLD RIBBONS! Childhood Cancer Awareness Bumper Stickers, Magnets, T-shirts! Or for ANY cause!

GO HERE!

We will be updating this in the spring with events you can join to help us raise awareness! There are many foundations, causes, and things you can do to make a difference. And we encourage EVERYONE to do SOMETHING!!!

Mark your Calenders and Schedule your appointment TODAY!

We were able to book 2 buses for the Sweet Baby Mallory Blood Drive! Please sign up for a time! I would like to see all of the time slots booked before the drive even starts! Lets make this a HUGE success everyone! This is a drive that will not only benefit my daughter but SO many others. So many families that I have met on floor 10 of the children's hospital have been there for blood transfusions, so many of them NEED your help.

This is personal to our family, never in a million years would I think someone I know, let alone my OWN daughter would receive a blood transfusion. Last Thursday marks #3 for our sweet peanut.

You are not only helping my child, but you are helping other people's children, mothers, fathers, siblings, grandparents, you are helping ALL of these people by attending. I just cannot say how IMPORTANT this really is.

Ryan wrote this the day before her surgery "Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever.  Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen."

I know I have posted this before, but this truly describes how we feel. It is worded perfect, it is the raw truth. They had blood on hand for our peanuts major abdominal surgery that could have potentially saved her life. This hits home for us. Every time Mallory goes through chemo we have a 50/50 shot of her needing a transfusion, both rounds of chemo ended up with her getting a transfusion so far and we have at least 2 more rounds to go, she had another one the day after surgery because she lost some blood (not a lot but for a baby a little is a LOT!)

I will be the first to admit to being naive about donating blood, I have only done it twice in my life, that's NOT enough. It's not acceptable, I will be lining up every 56 days to have my blood drawn, I hate needles, I HATE THEM! But I will be down there EVERY 56 days until they tell me I can no longer donate. You can donate every 56 days, this equals out to be around 6 times a year, which is 32 times in 5 years. This is 32 people that you can make a HUGE difference in there lives by doing it. So please if you have a heart, if you have blood pumping through your veins, if you qualify, I beg you to please help someone, you truly could save a life. You can make a difference by taking a small step and EVERY step counts no matter how small it is!! The blood Mallory received was from Michigan Blood the same blood drive that you will be attending. All blood donated will go to West Michigan Hospitals. THANK YOU THANK YOU THANK YOU!!!!

https://donate.miblood.org/portal/. Use 49508 as the zip code & "goodale" as the sponsor code to search for the drive (it's labeled as "Wal-mart") and then schedule your appointment.

This is the first SMALL step we are making towards Childhood Cancer Awareness, it is the first small step that is going to lead to very big steps, and once our feet are off the ground we are going to RUN!

TGIF

Jillian : *Giggle* HEWWWOOOO
Mallory : (What the heck?)

Gosh I LOVE my kids! Seriously could they be any cuter? I think not!
Mallory loves her bouncy seat, she totally is not down with the whole sharing it thing.

Mallory had a HUGE milestone last night, she only got up 1 time to eat! I knew, knew knew that blood transfusion would do her some good (I mean seriously look at those pink rosey cheeks, I wouldn't blame you if you were tempted to kiss the screen right now) but really 1 time? REALLY? I know that it's going to still be rocky through chemo but hey, I'll take it! One night is a step up from NO nights! On average I get up at least 3 times a night but usually more like 5-6 times.

Although my girly never had much hair, I decided to share some of mine. Not so sure brunette is her color though. I remember watching a skit on Saturday Night Live about baby wigs, I totally think we may need to get her one (ok so more for the giggles than it being in anyways shape or form practical). She rocks being a bald baby, I love her soft smooth round noggin, I can't stop kissing it all the time. I thought it was going to be tougher because my dear little Jillian had a LOT of hair when she was born but nahhhhh both of my girls are SO different, personality and with looks. 

This is baby Jillian (same age as Mallory), so sweet, so kissable. Mallory is way CHUBBIER, she has a sweet smile and she only shares her big smile once in a great while. Mallory's nose is smaller and so are her eyes. Jillian is whimsical, goes with the flow, and is a total ham. Mallory is strong, knows what she wants and won't give up till you figure it out, and is outgoing and loves everyone. I believe that my kids came in the right order, Jillian has the personality to get her through anything, and Mallory has the personality to fight (I am also assuming now this will equal her being a tough kiddo but that's totally fine, we can manage!).

Whatever it takes

Today was a GOOD day.

Mallory had clinic this morning, low and behold they went to attempt to draw blood from her broviac (they always try before the draw it through her arm) and it WORKED! I only can hope that it continues to work for the rest of treatment. Having to hold my baby down while they draw her blood breaks my heart, this just makes it much easier.

Her labs were within reason for just being done with chemo (on the low scale but thats what chemo does) except her hemoglobin. It was at an 8.2, typically they do transfusions at 8.0 but this being said they were going to wait till Monday to do it, but I told them I wanted to get it done and over with. We could wait till Monday but that would mean Mallory would still feel crummy, she would be lethargic, and be difficult to feed and get to sleep. So now my baby has regained her color, she looks great, and is feeling much better. Each transfusion takes 3 hours once they get the blood up to the floor. It takes an hour or so for them to get the blood up to the floor so it took quiet awhile to get going but once we did we relaxed, Mallory snuggled up to me for 3 hours straight and it felt great.

Another thing I found out was the blood Mallory received today was from a blood donor through West Michigan Blood http://www.miblood.org/

So if you've donated recently and had A+ blood you could have helped her out!!! I am super excited about the blood drive, they are trying to come up with 2 buses for the event so more people can donate!!!

Please make an apt at https://donate.miblood.org/portal/ the zipcode is 49508 and "goodale" as the sponsor code to sign up so we can get 2 buses going!!!

One thing I did today that I was extremely proud of was I gave my daughter a shot of Neupogen. Now I am not happy that I may have to give my daughter daily injections but if you would have asked me a month ago if I could do it, I would have said no, absolutely not, no way. And today I did it. I know that this will help her body recharge faster, and the more chemo she has the more often she will need these injections. After round 3 they are predicting she will need them everyday so I HAVE to do them. And I can. It's not fun, I don't enjoy it but I am going to do whatever it takes to help my daughter win this fight! Even if that includes injections into her sweet chubby baby thighs on a daily basis. She is strong, she's such a trooper, through all the poking and prodding this little girl is resilient, she still laughs, giggles, and melts your heart.

We now go from appointments every thursday to every Monday and Thursday while she receives the neupogen. So yes I have plans every Monday and Thursday for the next 8 weeks. On top of that we have Scans, more tests, and other appointments for Jillian (2 year check up and her eye doctor apt).

I will be consulting with her pediatrician because they believe she may have torticollis. Mally favors one side of her head and she is developing a slight flat spot on one side of her head, so hopefully they can correct it with physical therapy and some neck exercises to fix the problem. (Just what I need MORE APTS! lol)

I also would like to inform the general population that it is RUDE to park your vehicle so close to someone elses that they themselves CANNOT get into there own car without getting in on the passenger side and have to lift a baby seat over another carseat. So needless to say I am not apologizing for the note I left on your car if that was you.

Hope everyone had a PLEASANT DAY! :-)

To my Dear Friend

A lot has changed since November of 2010. There was a  baby shower was for my friend Jessica, she was a childhood friend that we lost touch with over the years, her family was a HUGE part of my life growing up, I remember so much about them. And let me tell you they are STILL amazing people to this day, although we lost touch we're starting to rebuild our relationships with there family. Through this whole ordeal with Mallory they have been there for us, they have truly just stepped up to the plate and have given our family their hands and hearts. We adore them, Thank You Nancy, Steve, Jess, Ryan and Little Landon. You are little lights to us.

God did something miraculous through Jess's baby shower, he introduced me to one of many Great people. One of them being this adorable cute petite blonde haired girl, Her name is Erika. Let me tell you something about this girl, she is AMAZING. We talked at Jess's shower about our little girls and low and behold her daughter Kylynn is only 9 days younger than our Jillian. Little did I know that this small conversation would escalate into a friendship that has developed so much since then. 

God sent me Erika, he somehow knew I would NEED her. It's all in the big picture. She facebooked messaged me about a play date with girls, and as a mom you are always hesitant about introducing your children to other kids, what if this mom doesn't agree with the way I parent? what if our kids don't get along? what if its awkward? I had only talked to her 1 time before driving up to her house for our first play date. Needless to say it took maybe a whole whooping 4 minutes to get over the nerves of mustering up the guts to start talking, and ever since then we haven't stopped. I spend more time on the phone with her than ANYONE else. We can talk for hours on end.

She relates to me, and I relate to her. We don't judge each other, we don't judge each others parenting, we help each other. We've laughed together, we've cried, we've had a great time. So what we lose our temper with our kids, we let them watch too much TV, we let them run circles around us, so what. They are good kids, no parent is perfect and we have both come to accept it. There is no "book" that teaches you to parent, our girls are totally different and in someways totally the same, and it's fun. We compare our girls, but it's not to put each other down its to celebrate there differences. Because they are different, no 2 children are the same, we accept that, we love our girls. I love Kylynn as if she was my own baby. I could give her tons of hugs and kisses because she is an AMAZING little girl.

Last night I called her while I was on my way to pick up some diet coke (no surprise there) from Family Fare, and I knew she was having a few rough days and wanted to surprise her with a bottle of wine. Her husband just changed shifts and is now on 3rd shift, making it impossible for her to get out of the house, and I'm sure if your a Mom you can image how exhausting it can be stuck in the house with a needy 2 year old for days on end. So we had some wine and we talked.

I finally figured it out, God sent me Erika to restore my faith in him. To restore my faith in religion. A lot of people have said to me that I need faith to get through these difficult times but its hard to keep faith when your child is ill. But it wasn't God or religion that made my baby sick, it was the world, it was something far from God that did this to my baby. I question my faith everyday since this has started. I am far from perfect, I do not go to church, I do not discuss religion on a daily basis, I don't acknowledge God's presence in my life. And life isn't black and white, and there is a reason why we are going through this. Erika made me realize this, that God has a plan for our family. I think this battle with Cancer not only affects my child, it affects us, it affects Jillian, and it affects my friends and family around us.

I have been brought to my knee's, I need to change. I need to have faith, I need to keep faith, I need to believe in faith. We had the path of life decided for us, our baby has Cancer. So now we have to have faith, we need to keep it, and we have to believe in it. That everything in life does in fact happen for a reason. Cancer is not what defines us as a family, it's just the beginning of what amazing things life has planned for us. This happened to our family because God knew we were strong people, that we could make a difference, and although its been a tough road, we are going to make it.

God gave me Erika because he KNEW that I would need her, he knew that she was the right person to help get me through this. That she would be the PERFECT shoulder to lean on, that she would love our family unconditionally, that she was the one person that could make a difference.

So Erika G. just so you know you are amazing, I cannot thank God enough for putting you in our life. For being a great person, for helping us through this, seriously I am a better person because of you. I am excited for the years ahead, I am excited to see what life has in store for us and our girls. Thank You Erika, Thank You.

Chemo makes . . .

Miss Mallory feels CRUMMY!!!

I have fought her over and over and over to drink even a small amount of food yesterday. I thought she was getting better at eating more at a time but that is not the case now. She looks pale, doesn't want to sleep, doesn't want to eat, won't let me put her down, and she just doesn't feel great.

Its horrible to watch her be so miserable, we can't give her tylenol (they don't want you masking any fevers whatsoever because it can be a sign of an infection). The Zofran doesn't seem to help.

I just wouldn't be surprised if her hemoglobin tanked and she needs another blood transfusion tomorrow. She has the cutest biggest rosiest cheeks I have ever seen, and now she looks so so very sick and it's just breaking my heart.

She slept a total of 4 hours last night (broken up with a feeding in between), and now she's been sleeping since 7, so hopefully she takes a NICE long nap so that she feels a little bit better.

I am having a hard time trying to decide what is "normal" baby and what is the effects of the chemo. Is she just clingy because that's how she is? Or is it because she doesn't feel good? Does she bird feed because of the cancer? Or is that how she is? Is she teething? There is no book on "infant" cancers, its not like they can TELL you whats wrong.

The great thing though is we are 1/2 way done with treatments (as long as the CT shows the cancer is shrinking) so that means hopefully 8 more weeks left of her feeling crummy. Our next rounds of chemo are 3 day impatient rounds, and they are both in Februaryv (So mark you calenders friends because I'm going to need some visitors to chit chat and keep me occupied, I can only check facebook so many times!). So there is a little light, but can we please fast forward to March already?

I packed away Mallory's 3 month clothes the other day, and I was so sad when I packed away her newborn clothes, but this time I wasn't sad. I was glad, that was just a small sign that we are making it, she is getting through it, growing, and thriving.

(Ok and seriously is this NOT the cutest picture ever! Mallory mid sneeze, it cracks me up!)

Big Girl Mallory!

 Mallory's FIRST Cereal feeding by Spoon!
(We are trying to mix her medications in with the cereal to make it easier on her and on us!)

First bite not so bad!

Not so Good

REALLY NOT GOOD!

TAKE #2

Getting Pumped up!

Pretty ok!

DELICIOUS!!



ALL DONE!

Hello Monday!

So this morning has been interesting in every way possible.

I went and picked up bagels from Panera (YUM) on Sunday and decided that we would have them again for breakfast, so I load up the toaster, grab the butter and cream cheese out of the fridge turn around and my toaster was SMOKING and Flames were shooting up from the bottom. Needless to say I grab the toaster, knocking over 1/2 a can of formula and threw it out into the snow. (One of the nice things about living in Michigan, hahaha). Luckily it didn't damage anything, usually I take time to change Jillian or Mallory's diaper or use this time to go to the bathroom but this morning I was in a Zombie State so I stayed in the kitchen THANK HEAVENS!

Ryan and I's nightly routine is to spend at least a half an hour talking (which we have ALWAYS done, I think making sure you take time out of your day to spend talking with no distractions helps any relationship) before we go our separate ways, this poor boy has been stuck sleeping on the couch for 6 months now. (I had preterm contractions with Mallory had a TERRIBLE time sleeping for months). Last night we were discussing how lucky we were that Mallory got the cancer that she did and they found it as early as they did. The hardest part of it for us is they are leaving a tumor in her, they can say that they've killed all the cancer but it will be so hard for us to accept the fact that she is "cancer" free when she has a supposed dead tumor still inside of her.  Obviously the oncologists know what they are doing but still it will be hard to accept.

I met a beautiful little girl at clinic. She is just sweet as pie, she is turning 3 in March.She has Neuroblastoma Stage 4, the cancer was found only a few weeks before Mallory was diagnosed but this girl is not as lucky as Mallory. She has already had surgery to remove a tumor and lymph nodes, it is in her bones, in her bone marrow and in multiple places. I pray for this little girl, they will be doing heavy doses of chemo, radiation, a stem cell transplant and antibody therapy. They will be inpatient in the hospital for months and months. She holds a special place in my heart and I have only met her 3 times.

Yes we are going through a terrible situation, but there are many children that need help. We have met a few different families that I pray for everyday. That these little kids can be healed and that there family stay strong throughout this nightmare.

Mallory had clinic today, her potassium was back to normal so no signs of any kidney damage from the chemo. But the poor girl has to have blood draws from her arms because her broviac is not working, our nurse said we were going to try to make it through the next 2 rounds without having another surgery. Which means blood draws from now on, and the poor girl has so few usable veins and the ones she does have our blown from being drawn so often.

Mallory is also doing better since we started the prilosec, she is drinking bigger bottles less often for the most part. Today she has not wanted to eat much, but that's partly due to the chemo making her less hungry and her blood counts falling again. Hopefully in a few days she'll be back to normal. We are going to try adding her medication to rice cereal and spoon feeding her (her 1st BIG girl meal!) to see if this helps her keep it down. She's been refusing to take it lately or vomiting it all over us.

All in all its been a pretty good Monday, my Momcation helped me recharge and I'm feeling better.

We also hit 30,000 VIEWS! That's 30,000 people that have read about our baby girl and her fight. 30,000 people that are now aware of Childhood Cancer, 30,000 people that have been thinking about Mallory, 30,000 people that CAN make a difference. Thank you to the 30,000 visitors that have supported us through! Mallory and our family THANK YOU ALL!!!