+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.

day +8

So this has been what's going down:

Lots of fevers, antibiotics, cultures, diarrhea, pain, throwing up, not eating or drinking, frequent dressing changes. We have a very sad, sick, and tired little boy.

I can't wait until all of this is over. I'm pretty sure Adam is feeling the same way. I read in a fellow NB mom's blog that she found comfort in knowing that this day was never going to have to be done again. Amen, sister. Amen. Everyone said prepare for the worst, hope for the best. No, not us. We won't have to go through the ugly time. It won't really happen. We are invincible.

Wrong-o. God keeps proving over and over to us that we really aren't. I am in the "angry" stage today. Why him?? Why to a three year old who has not experienced -anything-? Why to my three year old with the most tender, joyful spirit? Why not me? I've been places, seen and done things. I'm the one that should have to endure this pain. Not him. I fear that he will be forever broken.  I fear that he will have trust issues for the rest of his life. I fear that he won't get to experience life the same way as his brother...one way or another. My poor, sweet boy. My heart is broken, and then is broken over and over again. Yet the world keeps spinning. People keep moving. Aren't you all supposed to stop too?

Okay, breathe. Out of bed. Time for day +8 to start.

We love you all.

Please pray for my niece as well. She has been diagnosed with type 1 diabetes and is still in the hospital.
Pray for strength for my sister in law as she has had to learn how to advocate for her baby as well as  start to learn a whole new way of life.

Thank you, dear ones.

into the woods

Well, I think it's safe to say that we are in the thick of it.

Real pain started on day +3. We've started scheduled Morphine and Ativan (for nausea). He can have Benadryl/Phenergen when his Zofran and Ativan aren't keeping him from throwing up. Today Elijah has a fever. This is completely normal for this time, but still scary for me. He is sleeping a lot and not eating. He is on TPN and isn't able to handle any feeds, food, or drink at this point. However, heis still mostly tolerating my breast milk, so there's that at least. He hasn't been wanting to get out of bed. I got him to paint a little bit yesterday and Adam got him to today for about 5 minutes.

                                    

My poor babe. I love you so much and I wish I could take all of this away. I know in a few weeks your body will start to grow strong again and your wonderful smile will come back, but right now I'm so scared for you. 

This too shall pass. 

The other babies are having a tough time. Actually, we all are. Trying to hold it together though.

Thank you to those who are keeping up with us and for all of the prayers.

       

Lots of love to all of you.

fiat

March 25th was Elijah's Stem Cell rescue. It was all very anti-climatic. It took about 10 minutes to go in and that was it.

So far he's doing great. No nausea. No mucositis. Now we just wait for him to get worse and then get better. I can tell his energy level is decreasing daily and he's not eating or drinking very much.

Peace and love one another!

grief does not change you. it reveals you.

I just finished the new teen sensation, "The Fault in our Stars." It was alright, I appreciate it for what it was, but obviously rolled my eyes through parts of it because I'm so mature and all...*enter here universal symbol for sarcasm that we don't have, but should*.....oooookay! who am I kidding?! I loved it! I'm a sucker.  The novel is about a young girl who has cancer who meets a boy - love story ensues. While reading this book not only did I enjoy the gushy stuff, but I also felt like I was on the inner circle. The cancer club, if you will. I was allowed to laugh at the jokes and cry - cry and mean it. I knew what all the lingo meant. I felt special in a way? A truly screwed up way. When it takes your mother and threatens your child it becomes more. It's no longer an idea, but a hideous dark figure gazing at you from the corner of the room and closely following you upon your exit (picture Zelda here) -  threatening your sanity, your marriage, your will to live, your family. You know what I say to him? Today, I say screw you. You scare the shit out of me, but there's no way I'm backing down. I'm too stubborn. Now I have Tom Petty in my head. And I feel like a cliché. Haha. Tomorrow I might not be as ballsy. Or lame.

Elijah has been doing well with the Busulfan. So far no nausea and he has a ton of good energy. By good energy I mean that there are less than 4 major temper tantrums a day and lots of giggling and playing. We've been building puzzles, playing with play doh, coloring, and playing Jake and The Neverland Pirates. So much fun. He's eating fairly well, but we did go ahead and put the NG tube back in which broke my heart and his spirits a bit yesterday. We decided to go ahead because I am giving him about 6 oz of my breast milk daily (something that will help protect him from some infections and help him heal a little more quickly) and also one of his meds is just downright gross and tube means one less power struggle. I hate the tube and he does too, but I know this is for the best right now. Especially because he is going to want to stop eating here so on once the mucositis sets in. So far, so good. 

I'm soaking up the smiles while I can. Much love to you all.