Calling all Lijah Lovies...

When Dr. Weiss dropped the C bomb on us on July 15, 2013, I did not think we would ever see this day.

When we walked last year in the Butterfly Walk with so many of you, I couldn't help but wonder if we'd be back to walk again in 2015 as a whole.

But, here we are. Three days before Eli's 5th birthday, we get to walk in the Butterfly Walk for the second year in a row all together. My cup overflows, yet again (as well as my eyes).

We want this year to be a blow out. I want it to be huge! I want you all to sign up, donate, and come to my house after for a huge cookout to celebrate Eli turning 5! Who's in?

Here's the details:

Team Elijah - Butterfly Walk
May 9, 2015
5k starts at 9am
1 miles inspirarional walk starts at 10am
Free games, Free Food, Free Entertainment!

Sign up/Donate here:  https://runsignup.com/teamelijah

More info about the walk/race here: www.butterflywalk.com

Every dollar raised goes towards Pediatric Cancer research (a big chunk of that goes to Neuroblastoma research which currently has no cure).

Let's party.

Mama, I need you

Today I heard my son say that he needed me. As he said those words his face turned purple, his body started convulsing as he vomited into a sterile plastic bucket, my daughter cried at my feet, and I didn't  feel or hear him breathe for way too long. I went from sitting in the chair next to him to looking in his face, panicked because I wasn't sure if I was imagining this or if it were real. Is his face usually this color? Is he coughing because he is just choked up or is he coughing because something is wrong? What did he eat? What did he last get? I said with urgency, "Go get someone." No one moved. I said it again, and still no one moved. Finally, all the lights were flashing and the alarms were going off and a nurse burst in to our room and said "what do you need?" And I said "He's not breathing." A lot more calmly than I'd ever imagined I'd be. Why wasn't I panicking? I felt the tears. I felt the sting. I felt myself shaking. I felt myself wanting to hold him and scream somebody MOVE! My child isn't breathing! There is no air! We are both suffocating. MOVE!

We survived. As we all do. As we all will. An epi pen saves the day again. Can I just have one of those in my purse at all times? I feel like maybe that'd be a good idea. For all moms. For all people. I mean, can I just have one for when I'm feeling like I can't breathe? It happens all too often. My chest feels heavy, my lungs won't fill, I feel as though I'm going blue and no one is moving. Give me an epi pen. Maybe then I'll come to. Maybe then I'll be able to breathe again. 

            

                                

                                  

tonight...

i'm alone. i'm listening to beautiful music. i'm listening to beautiful music on a beautiful night. your daddy visits every few. He lets me know that even though I need to be alone right now (because I do, and you will too) that he's not too far if I ever need to bury my face in his chest. I'm such a lucky girl.

This evening I made spaghetti and meatballs per your request (Dylan and Elijah). Then we had a dance party. Not your typical "Boom Boom Pow" dance party haha, but the kind where we had dance partners and we asked politely if you minded if we cut in...

Dylan and I started the whole thing, then Elijah and Cecilia started dancing together as a couple on their own.

Oh my Lord. My two littles love each other. They have a genuine love for one another. They laugh together and play together and chase each other around my "pretties room." They get in trouble together. They fight. They are closer than I ever even imagined they'd be. I always thought Dylan and Eli would be for each other and Cecilia would just be for me. I have now realized I'm not in the equation and they are all for them.

Eli and Ceya- I don't know what your future holds. But I want you to know, that you have brought so much joy to my heart. You have such an innocent love for one another. You are how I imagined our lives to be. I know you are only 3 and 2. I know you have a lifetime a head of you. I know I can not foresee the future, but for RIGHT NOW... what I've seen in the past year....you are beautiful. You are best friends. You are what I wished I always had. You are perfection.

I love you both.

Dylan, I love you too. ;) You are a whole 'blog' of your own.

this little light of mine

We are home. We were discharged on Day +19. We've been home for quite some time, but I can't remember much other than it's been hard.  I haven't felt up to typing much so all of my Elijah updates have been on Facebook. I've been going through spurts of being super mom, but for the most part come up quite short. I feel like when I actually do sleep that I am dead to the world. I thought about taking some Zoloft, but decided maybe I just really need God instead. Or should at least try it out. Adam is busy studying to get his CCDE. He seems like he's in a bit of a fog as well. Dylan has regressed. He has been having accidents which is so completely uncharacteristic of him. He slept walk a few days ago. That was terrifying. Cecilia is emotional, and I feel like our bond isn't as strong and that makes my heart oh so very sad. Faye is doing well. She has cut 6 teeth this month, started crawling, eating food, started babbling, and sleeping through the night.

I might sound really Debbie Downer, and I might actually be or today is just the 11 year anniversary of when my mom passed away. To cancer. I hate you, Cancer.

The Butterfly walk is this weekend, and I'm a little nervous that it's going to be really emotional and that I'm going to be a mess. Keep it together, Zinser.

Okay, that really drained me. I'm done.

+16

Yesterday Dylan turned 5!! I can't believe it. Time flew so fast. It has been such a journey, and I love him more and more everyday. He's awesome. 

We were blessed with the opportunity to spend yesterday with Dylan (Cecilia and Faye too).  It was beautiful weather and such a wonderful day. We started with a mini band practice at Aunt Christie's house, followed by doughnuts, the zoo, then cake and presents with Grandpa at home, then soccer and Dylan's fave, bdubs! Thank you to all the ladies and cherubs who came to the zoo to see us and for the sweet gifts, Grandpa for coming over to celebrate, Nana for taking the day off from work to spend the day with Eli, Aunt Christie for taking time out of her day to spend the day with Eli and for staying up late and waking up early to make Dylan's cake. It was awesome. Seriously. Thank you all for the love. Dylan was over the moon happy all day.

Eli is doing great! His counts have completely recovered and he is off of TPN as of 5pm today. They are saying we will probably go home Monday. I need to spend the weekend cleaning our house to prepare for his homecoming (getting rid of germs and dust) and grocery shopping! I seriously can not wait to be home.

We love you all! Thank you for the prayers and love!!

i hate cancer.

My heart feels so heavy tonight. I came across yet another mother who lost her son to NB. This is the second time. I then proceeded to stalk her page for the next hour to see how similar their journey was to ours...looking for some sort of comfort - perhaps her son didn't respond as well, or he ran into other complications. None of that matters though. We will either win or not. The cancer will be gone. One day it will be gone. He won't be in pain anymore. I just really hope (selfishly...I think...) that it will be gone with him here. I will get to see him go to kindergarten and learn how to swim and play soccer and play piano. I can not even fathom the pain of not having him here. My body literally hurts when I think about it. My chest. He has the best giggle and I can't imagine not hearing that anymore.

I hate cancer.

Today, he is doing maybe a little better. He is still on GCSF and his ANC is 2000. Crazy.
I wasn't expecting that. I thought we'd hang out at 0 for at least a few days. It was just 0 for one day. He is still in pain. Restarted feeds. I'm not there today so I could spend time with Dylan and Cecilia.
I'll be able to gauge how he's doing a little better tomorrow.

breathe

Even though today and yesterday really have just plain sucked, it's been really nice hanging out with my best friend. Adam has been sticking around so that I'm not so strung out with a teething baby and a very sick little man. I love you, love. Thank you for being so wonderful to me and for making me laugh through this.

Last night Elijah's oxygen levels started dropping to the low 90s/high 80s. They went ahead and put him on oxygen. The docs say this is normal for this time. His lungs look clear, so we are still okay. His ANC is 100 today. I'm not sure if I should get excited yet, but I know that means we are on the right track. He's in a lot of pain still and on a ton of different meds: anti fungal, anti viral, GCSF, protonics, liver protector, morphine, Ativan, kytril, med for c diff that he has developed, tpn and lipids,...I think that's it.

Some of this is reminiscent of when my mom was in Hospice. Some of the sounds he makes, the way he is acting. I know it's a completely different scenario, but It makes me feel ill. The way cancer takes away your dignity...it disgusts me. I hate cancer so very much. I'm thankful that I'm here to protect him. You are safe, little man.

I'm so ready to be home. I want him better now. He is sleeping right now and his sweet little face is just so perfect. I wish I could stay and hold him throughout this entire experience.

Faye cut her fourth tooth today. She seems much happier. Cecilia is getting so so smart. I am astounded at her vocabulary as of late. Adam and I are pretty certain she is a genius. Dylan is dealing with a lot, but I think he's going to be alright. His 5th birthday is next week!!! I can't wait. I love celebrating the kids' birthdays. My mom used to make a big deal about birthdays, so I find it so important to do the same.

Today is +9.

I love you guys. Thanks for lifting us up.