Friday, March 16, 2012

Update 3/17/12

Today is St. Patricks day... A fun holiday that once again, like so many others in the last 2 years, gets forgotten about until the day of. When mommy forgets about holidays there are no color appropriate shirts to wear or sneaky leprechauns or elves to leave footprints for my girls. Dinner will not be special and there will be no creative crafts and pictures to document the days festivities.

I get so weary of not only being limited in what we can do for Piper but also for what cancer steals from the entire family...especially the siblings who are drug along this horrible rocky path. It stinks and that doesn't even touch how much. I miss a normal life and even so, I scarcely remember living a life without worry hanging over our heads. I just miss being a mom and I miss my much. Oh so much.

Piper continues to keep everyone here on their toes. Nothing is staying stable for long. Her bp fluctuates, her heart rate often drop requiring the medical staff to bag her and provide her oxygen that way. They are talking about pulmonary hypertension and her CMV levels in her bloodwork have jumped to 6000, leading them to think that that may be the cause of the infection within her lungs. Whatever the infection within her lungs is, it is spreading and making it more and more hard to breathe. I don't even know what to worry about the most because I am so overwhelmed with just how sick Piper is... Having her ventilated only means she looks so sick and that I am missing out on her hearing her sweet voice and granting her bossy little requests.

I was told yesterday that Pipers chimerism of her DNA was showing primarily my cells. In normal circumstances this would be a source of this point even the bmt doctors can't rally up enthusiasm because of how much Piper will have to overcome to even attempt a transplant. We are the lowest we have ever been and this is obvious. Every visit with her team and the ICU doctors leaves me feeling more defeated and they have moved her from "stable" to " unstable".

Rarely since Pipers young diagnosis have I asked "why", knowing that I will
never know the answer this side of eternity. Instead of wondering why this much pain has been heaped upon us, I focused on just being. Being contented with sharing a bed with the whole family and any times spent together. Being contented with taking each day at a time and appreciating each little moment I was able to give to Piper and even more, each little moment that she gave me. Contentment was the only way to survive and now I have such a sick little girl that I ache to make well.

I'm sobbing "why" with every breathe I struggle to take. I have no reserve apart from clinging to God in a way only the desperate do. My soul cannot fathom choosing to turn on Him as He is the reason I have survived this far. Praying is's my every breath and it's soothing. I know full well that God is capable of healing Pipers weary and sick little body but I also recognize that there is suffering on this earth and His will can just as easily be done when it hurts as when it feels good. I ache to never know this.

"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.”
― C.S. Lewis


  1. I have been following your blog for quite a while but have never commented. I am in love with your family just from reading about everyone. My prayers are with you all. I can't imagine the pain you have watching your sweet little Piper. Love and prayers to you!

  2. He is with you, Susanna. And he loves you and Piper, your whole family.
    Praying without ceasing,

  3. I became aware of your sweetfamily through a neighbor whose daughter is battling leukemia. I have been reading your blog for a few weeks now and was devestated to hear of Piper's latest turn. I join numerous others in praying for her and for all of you. I am doing the Warrior Dash later this year and, after following Piper's story, I signed up as a St Jude Warrior. Over the next couple of months I will be fundraising in honor of Piper and all the little St Jude Warriors who are in the most extreme of battles. I know there are no words of comfort that I can offer right now, but I join the ranks of many, both known to you and unknown, who are praying for Piper and all of you right now.


  4. I am not even sure what to say...but please know that this town loves y'all and we are praying continuously. Hannah and I went to Monroe tonight to get some chicken stew and were surrounded by a room full of people who love sweet little Piper and are praying for her. Love you!

  5. I don't know what to say either, but wanted you to know that Piper & your family are in my prayers. I think of you often.


  6. I just recently came across your blog, but of course my heart is broken hearing about your sweet Piper. I read this post as my 5 year old daughter, who is fighting cancer, is sleeping next to me in bed. As she asked me tonight if she could have a sleepover with me, I first told her no but then reluctantly gave in. After reading your post, I am so glad I did! Thank you for reminding me how precious life is and how quickly it can turn, especially in the cancer world, and how I never want to regret not taking advantage of moments like this. Sending hugs and praying for your family...Sally

  7. I do not know you guys, but someone from my church posted your blog on the church facebook page. I have spent the past 3 hours reading your blog and I feel like I personally know your family. I am and will continue to pray for Piper and your entire family. Just know that my entire church is praying for you and God has his hands on you guys.

  8. I can't imagine what you are going through! Your faith in God astounds me. Just know that my 4 year old and I pray Piper and your family every night. You have amazing strength and are example to us all.

  9. thank you for your relentless pursuit of truth, i respect and admire you so much you humble me...