Tuesday, April 3, 2012

We returned home from Collin's third treatment on Thursday, March 15, and by that evening I felt like I'd been run over by a truck. Three days earlier, on Monday of that week, Neya had a low-grade fever and a sore throat, so I had kept her home from school and took her to the doctor for a strep test to be on the safe side. The quick test was negative, and by Wednesday the culture was still negative. However, Thursday evening our pediatrician called to say the culture became positive, and right then I knew I had strep throat. Friday, we took Collin to our pediatrician for a strep test, and he swabbed Collin's throat and mine. Collin was negative, but I was positive, so he wrote me a prescription for an antibiotic. Since Collin was still on antibiotics for the c-diff, it seems he was protected against the strep. I spent the weekend fighting high fevers and feeling worse than I have in years, but thankfully I was well enough to head back to NY by Tuesday, March 20.

Collin had his fourth 3F8 treatment on Wednesday, March 21. He was still having problems with diarrhea. When the diarrhea began after the first 3F8 treatment, it didn't have the distinct odor common with c-diff (he's had it twice before so unfortunately this is a smell I have experienced), so I was surprised by the c-diff diagnosis. At that time I questioned whether the diarrhea could have been caused by the treatment or one of the medications he's on to protect his thyroid from the radiation (the paperwork for one says that if diarrhea develops, a dose adjustment may be needed)  but was told it wasn't likely. Since the diarrhea was still an issue after two weeks of antibiotics, they checked another stool sample for c-diff, but this time the culture came back negative; however this was expected since he was still on antibiotics. They told me to stop the antibiotics to see what happens, and conceded that perhaps it was being caused by the treatment or one of the medications. I doubt we'll ever know the cause, and nor does it matter; I'm honestly just tired of dealing with it and wish it would go away. Collin's new mantra is "Sore heiny...NO FUN!!!"

The 3F8 injection that day was planned for around 2 pm, so Collin's nausea and pain pre-meds were given accordingly. However, the injection didn't clear the QA process, so they had to prepare another one. This injection wasn't ready until around 4 pm, so by the time it was given, some of the pre-meds were wearing off.  So, Collin vomited for a little while after the injection, but once second doses of the nausea meds could be given, he started to feel better. Before he was discharged that evening, Collin was eating again, demanding food because the steroids were making him hungry, as well as cranky and unhappy. Wednesday evening and Thursday morning, Collin was having tantrums and behavior that weren't common  for him. Between the constant traveling, being away from home, treatments, and steroids, it wasn't at all surprising, but it was still draining to deal with and frustrating not to be able to help him calm down.

Last Wednesday, March 28, was Collin's last 3F8 treatment. When Collin woke up that morning he seemed fine, but then he barely ate any breakfast, which was a little out of the ordinary. When he was admitted after breakfast for his treatment and his vital signs were taken, we found out he had a slight temperature. His bloodwork was taken, and the nurse brought him a dose of Tylenol to see if it would help the fever go down. As soon as I gave him the Tylenol Collin threw it up, so they decided to draw more blood for cultures, get a urine sample, and planned to take a CSF sample to make sure he didn't have a serious infection brewing. We were also moved to an isolation room. Another dose of Tylenol was given, and thankfully Collin was able to keep it down. They decided that as long as his fever didn't continue to climb (thankfully it didn't!), they would give him his treatment. Of course he threw up almost immediately after the injection was given, but the vomiting didn't last long. Then he slept for a while afterwards. By the time he was discharged, he was ravenous and cranky, just as he was the week before. By then he also had a runny nose, so I figured he had developed a cold and on top of everything else, he just didn't feel well. Thankfully his cultures stayed negative, which meant he had no infections brewing.

We were entertaining ourselves with gloves for a while....

Collin rested for quite a while after the final injection.

Since being home after the final treatment, Collin is much happier. He has finished the steroids, which also helps. He has another week on the thyroid medications, so I'm anxious to see if the diarrhea clears up once he's off them. I think it will be good for his body to get a break from medication. This week we are staying close to home and resting as much as possible. I am trying to get organized again so I can try to get caught up on things that I'm behind on and get back in "control" of my life. Collin's next MRI isn't scheduled yet, but should be sometime in the beginning of May. We have to go back to NYC for it, but we are planning to take an extra day or two to do some fun things in the city with Neya and Collin. Once we know the MRI results, we will discuss with Collin's doctors what comes next in his treatment plan.

Please pray that Collin's next MRI is clear. Please also keep Collin's oncologist in your prayers. She has been fighting cancer in her pediatric patients for 20 + years, but I have recently learned that she is in the middle of her own battle with breast cancer. And, please keep fellow medullo warrior Bree and her family in your prayers. They have been in my heart since her grandma and I met online in 2010 after Bree's diagnosis. Two year old Bree earned her angel wings two days ago, and my heart is broken for her and her family. Oh how I wish cancer would leave our babies alone!