Category: Hospital Stays

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!

It has been a roller coaster FOR sure! We knew that it was going to come down to a last-minute call for surgery, but this was a front seat “fall apart” in the making. Jake was to go to surgery on Wednesday and everything was looking good… so on Tuesday we went in for a chest x-ray, counts and transfusions, only to be unexpectedly admitted over night. His counts were to low and the plan was to transfuse thru the night and then go straight to surgery that morning. This was not part of the original plan as neither one of us had anything to stay the night. Not to mention, momma was about to be gone for 7 – 10 days and I still had lots of packing and planning to do for that last night. Easter needed to be organized since I wasn’t going to be there, ya know? But we stayed, and at 5am, they took blood, came back and said, “it’s a go!” They came to get us a little bit later and off we went. BUT as we were being wheeled down the hall toward the pre-op area, out of the double doors came our surgeon, Dr. V. Straight out of a TV scene… “bad news… Jake’s platelets came up, but his ANC took a dive”. A big dive into neutrapenic numbers. Somehow, in a couple of days he had gone from the 900’s to the low 400’s. UNBELIEVABLE! At that point we were told that we would try again on Friday and in the meantime, they would boost his ANC with GCSF – remember, those were the shots Jake had at home for two weeks during pre-stem cell collection. AND we were informed we had to stay inpatient till Friday since Jake was neutrapenic for fear of picking up an infection. His hospital room = controlled environment. Needless to say, Mommy was a mess! But after a lot of discussion between our Onc team and Surg Team, we were discharged that night! Hallelujah… momma got to go home to pack and prep… Jake got a good bath since he won’t have one for a while. But we had to be back at TCH all day the next morning (Thursday) for transfusions again. Let me tell you, 4am Friday morning came quick! Yesterday morning (Friday) we loaded up, headed back to the hospital, and surgery was a go! After three delays, forth time was the charm! We were prepped for a 12 hour sit in the waiting room, but hours into his surgery, we were called into the little room and told they were “closing him up soon, it went great.” It was a GOOD FRIDAY indeed! We prayed that God would be with them, bless our surgeon, that the time on the table

would be as quick as possible, that the surgery would go smooth and they would be able to get everything they needed… our prayers were answered!!!! They started at 7:30am, they were done by 3pm! And we went from recovery to the PRCU which is a step down from PICU… such praises! This floor still has very specialized care but it’s a little more private, quiet and comfortable. I have a place to lay down, rather than a chair by the bed… whoo hoo! Because of the yo-yo’ing with Jake’s platelets all week, the anesthesiologist wasn’t able to give the epidural that we hoped for, so we are struggling with pain management and his oxygen levels today. He’s also working a big fever so we’ll spend another night on this floor, but he looks really good. His incision is HUGE! The mass is gone! The adrenal gland that started it all and was encased in the tumor is GONE! The kidney (that Doc V was concerned with because of the tumor surrounding the veins going to it) did great. He feels there wasn’t any trauma to it. They took new biopsies of the liver and we’ll get those results back in about a week. We are a step closer… deep breath! We are so proud of him! His strength and ability to keep going is just amazing. Thank you for all of

your prayers this past week and a half while things went from on, to off, to on again. The emotional roller coaster was definitely overload and your encouragement picked us up off the floor and kept us going. May you feel God’s grace as we do! Wishing all of Jake’s prayer warriors the most blessed Easter!