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.

after the storm

Just nine months ago we were living life as normally as we could with three children, four and under.  Adam had just started his new job at CBTS and I was staying at home with the kiddos. We complained about how hard our lives were. We complained that we were so strung out with all the kids, too few breaks, and not enough sleep.

...and now I cling to what I knew...

Today marks the first day of the rest of our journey. We start the process in our Stem Cell Transplant. We have a whole new team that so far treats us completely different. The Onc team treats us as though we know everything. They speak over our heads and in turn it agitates, but educates. The BMT staff treats me like I know NOTHING. For those of you who know me...like really know me, I'm sure you can imagine how I take it. :) I like to fancy myself as a pretty knowledgeable gal when it comes to this stuff at this point. Adam might say sometimes I think I know more than the doc; he might be right. So, I am scared beyond belief. Elijah is having the time of his life so far. Upon arrival yesterday, we were surprised with two huge baskets of awesome toys and activities to keep Eli and I entertained over the next few weeks. Aunt Christie and some of her wonderful friends got together and gave him bubbles, pinwheels, super fun straws (all great for keeping his lungs clear), dress up and imaginative play toys, crafts, puzzles, so much more and all of it is so much fun! The smile on his face was priceless. I'm pretty sure it was better than Christmas morning (plus he didn't need to share with anyone! Score!). I will be forever grateful for the surprise and the joy those ladies have given us.

We started Busulfan at 10:30am today which marks Day -6. He will get a two hour infusion every six hours for the next 4 days. We will then have a "rest" day on Day -2. We will have another dose of chemo on Day -1 and then we will have our transplant/stem cell rescue on Day 0. After that, we will nurse him until his counts recover and until he starts to feel a little better then we will go home. All told we will be here for about 30 days if all goes well. The biggest risk is VOD. Read more here: http://www.ncbi.nlm.nih.gov/pubmed/8467232 .

Since I am nursing I am able to take Faye with me everyday to the hospital. This causes a little bit of trouble because she is teething and all of a sudden starting to become mobile. But! She creates a bit
of distraction for us and reminds me to smile a little bit more. Adam is slammed at work, but he's no
less than a super badass and is killing it at work and then coming here in the evening so I can go see Dylan and Cecilia who are staying with Aunt Christie this week. He has a huge project that comes to fruition this weekend. Amongst all of this he manages to keep it together. Have I mentioned how badass he is? Seriously. Dude's got it going on. I respect him deeply. I don't know how he does it.

Dylan's second season of soccer starts tonight. I might be more excited than him. Who knew I'd turn into such a mom!

Love to you all!