One week later

Posted: September 1, 2010 by Kat in Uncategorized

It’s hard to believe that it’s been an entire week since Creed’s transplant.  I am still blown away at how his little body has continued to handle this stressful treatment.  You would think that weighing only 30 pounds that he would have been slammed by the chemo and radiation.  Then add a foreign substance (stem cells), tons of medications, and fatigue in the mix and well…I’m pretty sure you see where I’m going.  I spoke with his doctor this morning about what we should expect to see the remaining of this week and next.  She just laughed and said “who knows, the way Creed has handled this, I’m not sure what the next days look like.”  I hate to even say that he is doing good, for fear that the shoe may drop, but honestly he is.  He’s had moments everyday where he just didn’t feel great, as he says, “yucky”.  These moments started over the weekend really.  It took me a couple of days to realize that him feeling yucky, meant he hurt.  I assumed that he would tell me when he was in pain, and he did the first time.  But after that, the only way I could tell was to watch his vital signs.  Once I finally figured that out and got pain meds for him, he was a different kid.  So now my 5 year old has his very on morphine pump to control the pain.  Just what every FIVE year old needs right?  The dose is extremely low, but it manages his pain without making him sleep.  After the nurse taught him how to use it, and why he had it, everything has been pretty smooth.  I will share a funny with you…the first time Creed pushed the button I saw that the pump said “delivery” which i read aloud.  So now every time Creed pushes the button he says loudly, “delivered”, and smiles so proudly.  He cracks me up!!!

 The doctors are focusing very hard right now on preventing him from getting pneumonia.  Many of you know that Creed loves to get pneumonia.  It’s his “go to” sickness.  Because of his history with it, his lung size being small, and the mucosa from the chemo/radiation he is at a higher risk for getting it.  Breathing treatments, breathing exercises, and lots of moving around are hopefully gonna keep that at bay.  If you’re wanting a specific to pray for, this is it.  NO PNEUMONIA!!! 

 We’re hoping to see some white counts in a week or so.  Somewhere between day +14-21.  How exciting will that be?!? 

 I’m guessing you’ve all seen his cute bald head, I know he’s mine, but he is too stinkin cute!!  This was definitely one area that I honestly was a little worried about for him.  I just wasn’t too sure how he’d feel about being bald.  Saturday when his hair started falling out, he really didn’t care.  I’ll admit, I did help it along.  I found a roll of medical tape left in his room and started using that to get the hair out.  It was a little shocking when a pick chunk came out.  I froze for just a sec, then realized it was really happening and continued on with my “project”.  Creed laughed when I showed him his cul de sac.  That wasn’t such a great look for him.  But he didn’t care, he rubbed his bald spot and smiled.  We asked if he wanted Jon to shave the rest off, his response to that…”no way you’re shaving my head!”  Famous last words, about 3 hours later, he was ready to say goodbye to the hair that was left.  On Sunday morning Jon shaved the rest off, and the finish product is adorable!!

When I look back over this update and see how smooth things have really gone for us, and when the doctors say “they’re not sure what to expect, or why he’s handled this so well”, I smile and think, I know.  Prayers.  Creed has been covered in prayers long before he got here, and continues to be covered while here and I know that as he heads into the next phase he’ll continued to be covered.  I love thinking about that.  I love hearing that prayer pager go off, and him yell “prayer”.  I love looking at the wall where I put all of his cards and think about all the kind words that were written.  I love that the nurses and doctors here know that there’s someone bigger than them in control of this treatment.  The last three weeks have shown me that our God is bigger and greater than any situation we are faced with.  Thinking back to the very phone call I received about Creed’s diagnosis, I remember being stricken with fear, but also so relieved that we finally had an answer.  But  within an hour of receiving that phone call I grabbed my already packed bags and headed out to a retreat with a Cup of Joy.  I’ve been asked by many why in the world I went after getting that news, my response was, that’s where God wanted me.  Surrounded by my closest friends and women that love the Lord with all they have.  I learned a lot that weekend and have never regretted my decision to go.  I needed to see him in a big way. I did, and have continued to do so through out this entire journey.  All of you reading this and praying for us, are His hands and feet and that is very real to me.  Creed may not realize what all is going on around him and for him, but I do.  I love knowing that when you “think” you’re all alone that’s when God choses to shine the brightest if we’re willing to look for the spark.

Stephanie

Here’s a picture from Gigi:

“The Pinnells have looked after the health of our community for years and they have supported many causes including Creed.”

Pinnell's Clinic Drug Store

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Comments
  1. Rocky Thomas says:

    Steph,
    You are so right that our God is bigger than all of this. You are an amazing mother, daughter, friend and shining light. We are praying for Creed’s recovery and successful treatment every day, as are so many others. But we are also praying for you. No one can explain the feeling of helplessness that you have unless you have been there. But you also know that is the place where God lets you know that He is in control, that He is good, that He loves you and He wants you to know Him. You have become a part of our family as well.
    Please tell Creed that we think he is the best and we love the new look. Bald is great, it shows off his great smile. We will continue to stand in the gap and hope to sse you soon. Please let us know if we can help.

    Keep the Faith,
    Rocky & Terry

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