Tuesday, February 28, 2012

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.


  1. Read Mallory's story in Babycenter. Mallory and your family has been on my mind since then. I have prayed and will keep praying for complete healing. You are doing a great Job! Keep up the good work and keep hope alive. jeepjen

  2. Any person that is a mom knows you love Mallory. We have all been there, felt that way without added in the fact that the baby has a sickness. Poop, boogers, spills, tears, diaper blowouts, bottles, binkys, toyboxs emptied all over the family room......It's hard work. Being a mom of babies and toddlers is hard, hard work. It's stress on a daily basis, fun but stress. You are having all the stress, without the fun, with more stress and lets not forget terror sprinkled in. This will pass, Mall is GOING to get better, and some day you will be stressed because she's wearing a skirt that's too short. Until them, try to relax. I used to love to smell the top of their head, in the middle of the night. So soft and smelling like Johnsons baby smell. Delicious. Breathe-one day at a time. HUGS Ashley xoxo

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  4. I feel your pain.

    This the "new normal" which we must accept in order for our children to thrive. I look at it this way, with all of the effort we have to put forth now; the sacrifices.. the reward will be just that much sweeter. The day I can look into my daughter's eyes, after being told she is now NED -- well, that will be the second happiest day of my life (right behind the day she was born!)

    In the end, this will just make you "better" parents. The bond being developed right now will be unbreakable. Live in the now, but look to the future! Hang in there!

    Father to Alyssa, dx 12/15/11. Neuroblastoma, Stage 4S.

    1. Adam, I am continuing to pray for your beautiful daughter Alyssa as well. Karen from FL.

  5. Dear Adam- I saw Alyssa's page and I am also praying for this sweet baby. So you Mallory and Alyssa have to endure this. Chris

  6. I am heartbroken as I read everything Mallory, you, and your entire beautiful family has to endure. I also am so thankful that Mallory is so blessed to have a mother and family that love her so so so so much. My continued prayers from Florida are with you and your family.

  7. I have been following your amazing girl's story, and I pray for your family all the time. You have EVERY RIGHT to complain! It's obvious that you love your super baby beyond words. You show that with each post, and throughout every single day. Complaining because things SUCK isn't a bad thing. Who can blame any mother for wanting better for her children? You desire such simple things. Things that so many of us never have to even imagine. So please, complain! Vent, yell, cry...anything that helps you release emotion and lets you catch your breath, even if just for a second. Someday it won't be like this. Someday this will be a bad memory. Someday your sweet girl will be looking back and reading this, with tears in her eyes, amazed that her mom was so tough, so strong, and helped her get through all of these horrible things to grow into a beautiful woman. Have faith. Ask for help when you need it. Breathe when you can. And keep loving your family each day. <3

  8. Read your posts in the September 2011 group on baby center. I have been following your blog for weeks now. My 6 mo old, Austin, and I pray for Mallory and your family every night. I cannot imagine what your family is enduring. God bless!!!