It’s been quite a ride this week. We were doing so well the first few days out of surgery, only to take a few steps back, but hopefully we are rounding a corner again. Jake starting having severe abdominal pain Tuesday and Wednesday (much more than just the pain from his incision), then heavy diarrhea set in, and then blood in his stool. They ran every culture, test and scan imaginable to rule out anything that might possibly take him back to the OR, and finally came back with a confirmed case of c-diff. It’s a bacterial infection that happens to a lot of patients after surgery or those with jeopardized immune’s and it’s highly contagious. Seems to run rampant in hospitals, actually. So, while Jake is healing from being almost severed in half, he’s working around a very unhappy and irritated colon. Today has been one of the better days, although you can look at him and see how sore and worn down his little body feels. The c-diff reminds me of my colitis episode. It’s extremely painful while it’s inflamed and the days after are super tender and uncomfortable, and food is NOT your friend. This has been an interesting stay as we have stayed on 3 different floors and four rooms in the past 10 days. I am the queen of packing up and moving on down the hall… or floor… or wherever. We sat on the surgical floor for a good part of our stay but requested to get to 9 just as soon as they would allow. Jake is a cancer patient first, surgical patient temporarily, and we discovered quickly that he needed to be in the hands of oncology nurses. We had very nice nurses but they aren’t trained in the ins-and-outs of cancer patients, what drugs they are allowed and not allowed, how they should be administered, and what may or may not be combined. I’ve learned just how important it is to watch and question anything that makes me feel uneasy. I’m his protector and accidents are made all the time, never intentional (why they are called accidents), and I’m finding that I know his history and his disease better than anyone. Lack of knowledge and “normal protocol” almost landed Jake in serious situations on two occasions. But we’re back here on 9 and happy to be “home”. As for being “home”… about 4 AM there was a LOT of banging going on in the room next door for quite some time so I stepped out to ask if everything was OK. About that time, a door open a few rooms down and a dad yelled out, “can someone stop that banging!” A few minutes later, a nurse was in there telling them to stop (which they couldn’t hear because of the noise). It went something like, “well, ma’am we DO have a work order”. She won and it stopped. But when we woke up this morning, we had a tub full of nasty! The commotion in the middle of the night worked itself into our pipes. So we moved rooms… again… hence the 3 floors and 4 rooms in 10 days. As for now, we don’t have a firm release date – Tuesday or Wednesday have been thrown around so we’ll pray for that. BUT Jake has two more hurdles to jump. One, is to get off the pump and start taking his pain meds orally. The second is for him to eat and drink. This one may be the hardest as he is really protecting his tummy. We would be so thankful for your prayer over those things. He is getting up and around a bit more so that is encouraging but we just want to be home. The 9th has become our home away from home, and there is comfort in the community found in these halls. BUT there is real truth in the saying, “home is where the heart is”… we miss our family! On a lighter note…

I’m ALL CAUGHT UP on my Duck Dynasty episodes three times over! “That’s right jack!”

Today started out rough for our little man. His IV blew in the middle of the night, then they removed his foot IV so he could start walking (ouch!), he’s had an upset tummy, and we were still having problems regulating his pain meds. Seems we would get them where he feels okay and then someohow loose our grip to find him in a lot of discomfort a few hours later. We did get him to the edge of the bed today with the help of PT, and were able to get him on his feet and walking for a few minutes. Afterward, we took took a wagon ride to see the playroom. By lunch time, he was worn out and he slept for hours only to wake up in tears from his belly hurting. But his fighting spirit pulled it out toward the end of the day as the pictures show, and he was up and able to walk out of his room a few feet into the hall to see the fish tank. Daddy brought him an Iron Man that shoots bullets so he would shoot them and we would tell him that

we have to walk to them so Daddy can pick them up and re-load. A little bribery and it worked! This is one proud momma! He’s getting stronger every day. Stay strong Handsome, you got this!

So it’s “post-op day 2”. It’s been a quiet day here at TCH. Looking from our window, the med center is empty. We were here on Thanksgiving and I vividly remember looking down on Fannin and thinking how lonely it felt. Today, it’s not such a lonely feeling, more of a peaceful, thankful feeling that we made this milestone. Surgery was a big step, one we’ve been waiting for since the beginning. When they tell you that there is a mass the size of a grapefruit in your baby, you want it gone. It’s GONE! We still have so much left. The liver biopsy will tell us if the spots in the liver have turned to dead cells from the chemotherapy and the status of any live cells. There is still cancer in his bones, but the chemo is slowly working and we will know more of that in a few weeks with his MIBG scan. Now, the bone marrow is our next big chase. Today Jake has been running a fever but it’s not unusual, and he’s struggled with his oxygen levels which keep setting off the machines. Of all the things attached to him, the finger monitor bugs him most. They pulled his GI tube last night and his catheter earlier, so those big tubes are gone – progress. He still has an IV in his foot, an IV in his arm and his chest port… more lines than he wants. They also have him in a diaper, this really upsets him and wants his big boy pants. We’ve moved him side to side throughout the day and it’s been heart wrenching to hear him cry out in such pain. I remember my first c-sect and how painful the first movements were. We’ve been warned that tomorrow we’ll have to sit him up on the side of the bed or a chair. They’ve mentioned walking but haven’t pushed that too much. He’s pretty enamored by his incision… boys and their scars! I have a picture so if you are a queasy soul… here’s your warning. I have to share a little something else… I felt really antsy earlier, just needed a break, and decided to power walk the bridges. As I was coming thru one of them, I ran into a friend from church. Her baby is here too, in the PICU. I didn’t even know they were here but God knew I needed a friendly face, her too I believe, and it was really nice to talk. Please pray for baby Sarah, while you pray

for Jake. I’d like to ask for prayer for all of TCH’s parents – for strength and courage to get through these days. A post from a friend’s FB today said “It was never promised in the Bible that God will only give you what you can handle”… she continued, that “actually, we must trust that God will never give us more than HE can handle”. Over the past few months the first part of that message has made me cringe. But today, the second part of that message

reminded me that Jake’s story has already been written in His book, we just have to follow God’s lead and find purpose in the journey. We must TRUST that He can and will handle it all. For the Bible does say, “Cast all your anxiety on God because he cares for you.” 1 Peter 5:7 So tonight, with one more milestone behind us, I reflect on all the little details that have come together these past few months and how much God truly is handling all of this. So from the top of TCH, we wish everyone a Happy Easter. He is risen, we believe… there is new LIFE!