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.


  1. I am a friend of Sam Snoeyink's. I just want you to know that I admire your strength through this nightmare. I am so sorry and want you to know that I have been lifting your sweet baby and your family in prayer and will continue to daily.

  2. Constant prayers for Mallory and for all of you as always. I admire your strength so much you guys! I hope she feels better soon and that her pain goes away quickly. <3

  3. {{hugs}} I hope Mallory recovers quickly from her surgery so you can enjoy lots of those sweet giggles and cuddles from her while you wait for the results :)

  4. I am glad you wrote again- I checked 50 times. I hoped to hear better news- this sucks. I imagine her pain is worse because her nervous system has matured, and she's more active. That sucks. I imagine they are sending the biopsy to CHOP n Philly. That's a great place. It's great you cleared the air with your friends, I imagine they feel guilty to talk to you about everyday things. My BF had breast cancer. She had it for 10 years. No one ever talked to her about it. I did. I asked her, listened, and told her I was scared for her. She told me I was the only one that broke the ice. I asked to see her port, told her it was yucky and it made me weak. She told me her too. I used to go to chemo with her, for 7 hours. She would tell me she felt bad. I told her I liked it. The nurse let me in the recliner if it was empty. She gave me a warmed blanket too, and we watched TV and took naps. I told her, it was the biggest break I got all month. I stayed in the hospital with her, laid in the bed, told funny stories and laughed. We made fun of the nurses, drank the snack juices, and wore the free socks. One morning her husband told me to come over fast. It was 6am, and I ran in my PJ's. Her legs were swollen and she needed to go to the hospital. Iwas so tired and scared I triped on the blanket, and stepped on my PJ's and my pants fell down. I had on no underpants. She and her husband were hysterical laughing. Five months later she was too sick to go to the bathroom and stay by herself. I told her, I'm coming in you saw my ass. I guess my message is this, without finding joy, laughter, and friendship you would NEVER be able to deal with this. You have to survive as a person, if you don't neither with Mall. We used to say are you F*&^ing kidding me? It was horrible, but we would crack up. It was how we coped. You know Ashley, you could doctor shop for Mallory, if you think someone else might have something else up their sleeve. Records and scans can be sent to CHOP, Sloan Kettering....just keep that on the back burner. You will not be the first or the last to do so. Well-I am going to bed, I feel sorry for you, the baby and everyone else in your family. You are doing a good job, and without your determination that baby would be in trouble. Goodnight P I am not proofreading this too tired!

  5. Ashley, you are amazing. There are no other or better words to describe you. What a gift your daughters were given when God chose you to be their momma. We love you and are here for you guys no matter what you need. (Even if it's just a funny Ben story...His life's ambition at the moment, by the way, is to be a professional ninja, and maybe a school bus driver too, as a side job in the winter when the ninja business is slow, I imagine...There. Did that help?) Hang in there. I pray every day that little Mallory beats this horrible disease, and that God gives her the strength to go through all that she has had to go through in her 4 month old life. I admire you and Ryan more than I can say. We love you!

  6. Your in our prayers! I can tell u it's plenty hard raising a child but one that has cancer or like my daughter a muscle disorder can be extremely hard! I am amazed you still have your hair lol I may have pulled mine out by now! KeeP pressing on and know God has a plan for your lives and He knew u could handle being this precious child's parents as u guys have more strength than u may ever know and are a blessing to those around you. I know Christy is amazed at u every day! Chins up!

  7. Ashley - you are an inspiration to everyone. A quote I live by: "Happiness is a choice", and although things are probably the worst they have ever been in your life, you are choosing to be as happy as you can possibly be.. and that, my friend, is the BEST MOTHER I am yet to see. You and Mallory have already touched so many lives, including mine. I look at things differently now, and aspire to be more like you, regardless of your ups and downs, you still smile, laugh and joke, be level headed, generous, loving and everything under the sun, which I can't imagine most people could really do. I have to say congratulations to your Parents, because they obviously raised you BEYOND right. Your strength is epic.

  8. this heart is with you all each day as you walk this are hearts all over the world...and if our love, prayers & positive thoughts are enough to help you take just one more step then we are all doubly blessed...
    thank you for sharing mallory`s story & yours...
    norma nj hemphill xoxox