Thursday, February 2, 2012

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.


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.


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.