Monday, June 18, 2012

Medical Madness

We have had a rough week. We got home to Texas late Tuesday, June 5th. We "enjoyed" 5 days at home, and I put that in para thesis because Case was a mess. I know I said after chemo we had to deal with "angry baby," but it didn't know the definition of it. After surgery he was so bitter, angry, and unhappy. I can't blame him, but it made life miserable for everyone involved.

Anyway, the very morning he started to seem more like himself, we checked into our regular hospital here in Texas for his first dose of high-risk, high-dose chemo. He didn't even have a chance to be happy! This chemo is 4 times the strength of what he received before. Or doctor said it was like throwing a huge bucket of barf in his face! But the nausea proved to be not even the issue.

I noticed on Wednesday night that he felt hot and, lo and behold, he had a fever. He also was breathing shallowly. So long story short, by the next morning, he was transferred to the Intensive Care Unit and had a breathing cannula (the breathing tube that sits in his nostrils). Turns out he had a ton of fluid on his lungs. I think to date he has had about eight X-rays!

He was sedated on Friday, they aspirated some fluid from his chest (drew fluid out through a needle). That wasn't sufficient, so Saturday he had a breathing tube put in, a chest tube put in, and a small tube down his nose that goes to his stomach. A ton of fluid has come out (over 1000 mL), which is great. He got the breathing tube out and is not sedated anymore (he had been sedated for 2 full days).

So we are on the mend, but still have a lot ahead of us. The fluid build up is leaking from his lymph system, which apparently never healed from surgery. He had a lot of lymph nodes removed and apparently you can't stitch up the lymph system, it just has to heal on its own.

Want to know how it heals? He can't eat for 2 weeks. Yep, he can't eat. Doesnt seem right, does it? When you eat the lymph system carries away extra waste, so to get the lymph to not flow, you don't give it anything to cary away. He is on IV nutrition. I am just really sad because I can't nurse him at all, and that really sustained him through past chemos and stressful times.

So as if having cancer and going through chemo wasn't enough to deal with, we have even more trash dumped onto our laps. We will be here at least another week, if not longer. He is already neutropenia, so if he gets a fever, we have to stay longer. By the time he might feel ready to go home, it will probably be time for round 2 of chemo. Boo! I am trying not to think about that. As usual, just pray for our little boy. He needs comfort and he needs a brief respite from all these medical emergencies he is having. He has such a long road of treatment ahead of him, and these "road bumps" (so much more than that) are only prolonging the treatment and misery! Poor boy.


  1. Ugh, and man it keeps on coming. Our prayers and thoughts will never cease for Case and your family! We love you all!!! xoxo

  2. I so wish there was something I could do..

  3. Oh Emily. What a hard trial to have to bear. I know poor little Chase has little if any understanding what is going on. IL know the wear and tear your family has got to be to the point of how much more can we endure. That is where prayer, hope and faith come it.

    I am so grateful for your post and for sharing this journey as it helps me understand a world as of yet I have not had to deal with. While we have our own set of trials,we don't experience everything but you sharing helps us see some of the hardship you are experiencing. As I read your blog I have come to see how much it relates to the Plan of Happiness. You knew the road to getting Chase better would not be easy but were willing to sacrifice so that he could live and have a good life. I believe that is much like what we agreed to in the pre-mortal life. We knew a little about what it would be like but not completely because we had not experienced it, however, we were willing to come through mortality that we might have a better life in the eternities.

    We continue to pray for your family. I use to think that if I could live more righteously that my prayers (my will) would be granted but I have come to know over the years, and I say know from experience, that living more righteously changes the person, and not necessarily the situation. God bless you sweet little mother. This is a lot for one to go through, but you are a giant of a women and have the spiritual power to endure it well. I love you my friend. Donna

  4. I'm so sorry to hear this latest update. Last month our little Emma was in the hospital for three days, and we got the smallest, microscopic glimpse of what your life must be like. I often think about Case and your family and am always hopeful to find good news on this blog. I just wanted to let you know you guys are in our thoughts and prayers.

  5. We don't say much, but we just wanted you to know that we read every bit of news we can about your struggles and you are ALL in our prayers. Case is dealing with a LOT...and so are his sweet momma and pappa. We love you guys!

  6. That was painful to read, I can only imagine the hell you are in. Case is so amazing. How can someone who can't even talk teach the world so much? I love you, Em. I hope this gets better soon!! xoxo.

  7. Oh Emily. I'm so sorry for the trials you area all going through. Please know we think of you constantly and are praying with all our hearts. Let Sariah know if you need a sitter or us if you need anything at all. xo

  8. Oh Em! I am so sad that Case has been hit so hard these past two weeks. I am hoping that if it is hitting him so hard, that it is killing the cancer too.

    Love you guys!

  9. Emily, Please know that your sweet family is in our thoughts and prayers ( not just in our morning and bedtime prayers )but throughout the day. Every time I drive by a hospital (which is A LOT bc of swim practice for Seth (Allen Presbyterian )) or see a cute little boy, I say a prayer for Case and for your family. I hope you can remember that if you ever feel alone in the hospital. You are not forgotten as we go throughout our busy days. Your family is such an inspiration and such a great example of strength through trials. Love you! Brenda