Our kids have always been healthy. Whenever they get sick, I'm patient, don't bug the doctor too much and usually just wait out the virus. With the exception of three total croup episodes between Brent and Quenten, and a stitches episode involving Brent, there have never been any serious trips to the hospital. But when Brent's stomach started hurting and he started running 103 temp that wouldn't go down, I took him to the emergency room on a Sunday afternoon. I feared appendicitis, but really he was backed up (too much info I realize but bear with me). After they, ahem, alleviated that problem, he was still in pain. Fearing that appendicitis is tricky in kids, the doctor ordered a cat scan. By midnight they had the results. "We've spotted a mass growing in your son's abdomen. You need to go see the pediatric oncologist in Springfield in the morning." My brain exploded at that moment. I managed to fill a prescription at Walgreen's, fill the tank with gas, and make it home that night. Brent and I agreed it couldn't be the c-word that night and went to sleep, but both secretly terrified. The next morning I left the kids with Brent and took little Brent to Springfield. After reviewing his scan and hearing his symptoms of fever and stomach pain and leg pain, the doctor sat me down and said, "I don't have the tests available to do this, but I'm guessing stage 4 neuroblastoma. He's much sicker than you think. I'm sending you to St. Jude Children's Research Hospital in Memphis tomorrow morning. We want to keep him overnight and get his fever down." I immediately called Brent who left the kids with our friends and rushed up to Springfield. After a round of antibiotics and tylenol his fever finally broke. They loaded us up in the ambulence, Brent followed behind in the car, and 6 hours later we were in Memphis. After rounds of blood work, scans, and raioactive scans, tests revealed stage 4 neuroblastoma. We are at St. Jude Children's Research Hospital. People all over the world are praying for our little guy. Many people we know are getting Mohawks to support him (rather than shaving their heads) because he likes to wear a mohawk. If you join in, please send the picture to my facebook page. Thanks for your prayers! We're going to keep hoping in the Lord, and let Him be our strength.
Dec 5, 2013 4:25pm
This whole round has been one thing after another. While wewere outpatient I wrote about needing to double and triple check everything.Well, on our last day, after being told we could go home on that day, I wascalled by pharmacy and told they would be mailing our medications. I told themit was cool and that we’d be leaving Tuesday night. So we went home and gothome around 3 a.m. Wednesday morning. BECAUSE I had spent the week doublechecking, I called the pharmacy to make sure they were indeed mailing the chemoand GM shots that were part of his protocol. No, they said. “You said you wouldbe here Wednesday to pick up your meds and then we would mail you the refills!”What the?! Brent Sr. ended up going hunting that day and I spent the day withthe kids at my mom’s baking pies. Between ingredients I was making phone callsto try to straighten it all out. We were eventually called back and told thatnothing could be shipped to us until Monday due to the holiday, that I would needto come back to Memphis THAT DAY to pick up the meds or face complications withBrent’s protocol!
When I found this out, my mom and sister began making phonecalls and I put out the word on Facebook and after an entire day of being onthe phone, found some great new friends who were going towards Little Rock fromMemphis who could pick up and take the medicines there. Then my mom’s friend’skids were going from Little Rock back up to Springdale on Thanksgiving day, theday we needed the meds, and would bring them with them! Cue sigh of relief! Butthis has just been one of those rounds that has been nonstop drama. When thePharmacy mailed our refill meds, they mailed it to our old address. This turnedinto a lot of checking and finally finding that though I had updated ouraddress (twice!) that the Fed Ex system is separate and a disgruntledpharmacist called and told me I should be more communicative. . . I bit mytongue. Thankfully. Bless their hearts.
Anyway. We still ended up getting the meds we needed but dueto weather, had to skip getting labs today in Springfield. When I called bothplaces, this set off another round of phone calls and double checking andfinding out that Springfield hadn’t faxed the labs from Monday to D clinic.Once those labs were sent and checked, our clinic confirmed we were fine tomiss the appointment and that our refills were indeed on their way and all isright in the world!
During this time, Brent felt horrible. His stomach was soupset, I had to keep him on 3 anti nausea meds in order to keep him fromthrowing up all day. We managed to keep him down to 1 throw up session a day,but he was completely laid out and losing weight the entire time! It was awful!For Thanksgiving, I took the kids to Brent’s brother’s house and then to myAuntie Kaye’s house for Thanksgivings while Big Brent and little Brent hung outat home. We were simply glad to all be home.
Monday was my breaking point. I wanted to crawl under a rockand hide rather than watch Brent suffer anymore. But in the back of my mind I knewit was temporary, just hard. I kept arguing with God, “Can you not just makethis a little easier please? I can’t stand him feeling so bad and myselffeeling so helpless! Please make him feel better!” As soon as that thought leftmy mind, it bounced off the ceiling and Brent threw up into a bowl. Severaldifferent times. It was that rough a day.(I’m not saying God didn’t hear me, but everything had to run its course.)
Today, Brent has been eating nonstop and feels tons better.I can almost see some weight begin to creep back on, even though he’s stillscary skinny. When Brent is low like that, we’ll do or say just about anythingto get a smile out of him. And that’s what our home time is about. He needs hissiblings around him. He needs both mom and dad laughing a lot. He needs to feelcomfortable and safe and that’s what it is at home. This is why all the dramaand double-checking and phone calls are worth it, because he would be feelingthe same back at the hospital, but not having the morale boost he needs betweeneach tough round.
This next round will start next week, weather permittingtravel, and we will DEFINITELY be in-patient this time. I’m not saying all thisin complaint or anything. The pharmacy is the heart of that hospital and areprobably the busiest part of St. Jude. The holidays made everything more hecticand confusing. The new team I worked with on Brent’s care didn’t know him andme like our team on the second floor. And nobody knew that the hospital recordsdon’t translate to the FedEx address in the pharmacy database! So if anyone’sat fault here, it’s me for choosing to try to do all this outpatient! Lol! I’msure it will go much smoother this time around and I want to hug everyoneinvolved in the craziness around me!
Keep praying everyone!
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